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I think we should be talking more about sexuality and Down syndrome, talking more about sex and Down syndrome. First, I want to talk a little about two nuggets that I feel address  this subject most wonderfully.

Yo Tambien

I watched the Spanish movie, “Me Too” (- Yo Tambien). recently (available on Netflix). It’s about a man with Down syndrome who is looking for love and finds it with his coworker. His coworker does not have Down syndrome and this causes complications in their love story.

Within this lovely, thoughtful movie is another story – one of a couple, both with Down syndrome – who are trying to consummate their love for one another. The girl’s mother is treating her as if she’s a child (- she’s not; she’s 24 years old). They end up running away and – well, I think you need to watch it yourself. It’s on Netflix.

This whole movie kicked me in the gut and had me sobbing like a small child. It perfectly expresses what I would imagine it would mean to have Down syndrome and want love – as all people want love.

Life With a Superhero

This book has the worst title but I think it’s my favorite memoir of a parent of a person with Down syndrome. It’s my favorite because, beyond the author’s excellent writing, her son is a sexually active man living with his girlfriend when she leaves us.

This book is not the more-typical story of a parent coming to terms with a Down syndrome diagnosis, it’s not about the first 5 years of Michael’s life as much as it about his entire unfolding. That includes sexuality, masturbation and losing his virginity.

And I like that. I think all parents of a child with Down syndrome should be reading this book. We talk a great deal about wanting inclusion for our kids, about fighting for it. We talk about discrimination, about how we want our children to grow up and BE HAPPY.

Love and sex are a big part of being happy when you reach adulthood. That’s just a fact. We are sexual creatures who were given our parts right along with our feelings for a purpose: to use them.

Our children are going to grow up, they will become adults with Down syndrome. And just as adults with Down syndrome currently are, they will people who are (hopefully) sexual; people who enjoy that aspect of life and find fulfillment therein. People who love – both emotionally and physically.

 People with disabilities are sexual too

My feelings on this are complicated. As a person with a disability who “passes” as non-disabled, I despaired of ever finding a partner who would love me.

Not just tolerate me; love me.

I thought it would be easier in some senses to be more visibly disabled – like a person with Down syndrome with clearly recognizable features – or like a person who uses a wheelchair. A visible disability seemed straightforward; direct, an automatic calling card. Like me or don’t. With a non-visible disability, it seemed to me that someone might love me up until they realized how disabled I really am, then BAM! that “love” would go out the window.

I don’t think it’s necessarily easier anymore.

I think one of the biggest battles I’ve seen my friends with visible disabilities fight is one of being seen as a sexual person POINT BLANK. Forget about the automatic calling card; it seems that most people with visible disabilities are shoved into this childlike box  in which they are not even seen as having sexual needs or wanting love. They are seen as children, or as castrated adults or adults who are almost monastic, saints in their pure selves….

Can you take a step inside those shoes and just imagine how that would feel? To be a sexual person who desires love and to be viewed by the world as some kind of saintlike, sexless child?!

That would suck on a level that I can’t even wrap my head around.

Yo Tambien – the movie, “Me Too” gets to the heart of that and I love it for that honesty even while my heart breaks for those who experience that reality.

Life with a Superhero is inspiring to me, as there is an example of a man with Down syndrome who is being a sexual man, enjoying that part of life and in love with a person who loves him back.

Which is what I want for my daughter with Down syndrome.

Which is want for all of my kids.

Heck, which is what I want for the whole world.

://kumbaya

 

Read More:

I noticed a few things floating around Facebook recently about how a lot of people think that Down syndrome is such a tragedy, but it could be worse… they could be an asshole

Some of the memes are a definite jab back at the person who was making some totally thoughtless comment like, “what could be worse than Down syndrome?‘ – um, being an asshole?!

It’s a quick spin. I get it.

But there are other memes or posts that are clearly about how all of these other things in life are so awful and by contrast, Down syndrome isn’t. Being an asshole is included on some of those lists, as are things like being a racist, a bully, etc.

I hate to break it to everyone but people with Down syndrome can totally be bullies too. And racists. And yes, assholes!

We can’t pick and choose how “more alike than different” they are, nor can we say “just like us!” and then say, “but only the good stuff!”

Because when you say that, you are saying that people with Down syndrome can’t be assholes. When people say that those with Down syndrome aren’t assholes, or exclude them from lists of awful stuff, it’s reinforcing the “Down syndrome angels” line, which is that people with Down syndrome are somehow an “other,” they are “special,” somehow not like everyone else (without Down syndrome).

The thing is, there are certainly some fundamental differences between someone with Down syndrome and someone without, but those differences are not about disposition. People with Down syndrome ARE NOT fundamentally happier than people without Down syndrome!

People with Down syndrome are not always happy.

And people with Down syndrome are not always nice.

I say that while thinking of my daughter who whacked her little brother on the head, shoved him and laughed when she got him to poke around in the cockroach trap.

People with Down syndrome are human, absolutely human, the good and the bad, just like all of us.

Acknowledging that gives them equality, which helps shift social attitudes and our culture of inequality with regard to developmental disability.

Now, I know there are going to be parents in the Down syndrome community who think I’m being “too sensitive”

I got a lot of backlash from my post on Down syndrome Angels. To be honest, backlash on this surprises me because:

a) the best selling book in the Down syndrome community is, what? “Those Angels of Ours”? Nope. It’s Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method .  We KNOW they don’t act like angels all the time. We KNOW they aren’t angels! We KNOW they are completely human, often-times really difficult kids!

b) we also ALL know that our kids have so much discrimination that they face. We  know that people are so scared of Down syndrome that they are aborting their kids with Down syndrome left and right. We all know that it’s very hard for people with Down syndrome to find meaningful work, create independent lives and have meaningful relationships – I mean, they can’t even get legally married without losing their health benefits!

With all of this absolutely known by all of us, wouldn’t it make sense to try and figure out the root causes of our cultural beliefs regarding Down syndrome?

Doesn’t it make sense to consider the language we use regularly and see if it’s a contributing factor?

We know that people with Down syndrome are infantized. We know that society keeps them in a perpetual state of childhood. So, why are we taking away their right to be a normal adult by keeping them in a an “angelic” state with the language we use?

People with Down syndrome are not angels.

They are human, which means that they can also be assholes.

Wear it!

A Vlogger with Down Syndrome!

Maria Jose Paiz Ariaz, a Panamanian vlogger with Down syndrome is shaking things up!

Maria vlogs (- captures short videos as a blog) for the news site, La Prensa, covering everything from her views on adults with Down syndrome to Flor Mizrachi (who is Flor Mizrachi??).

Here’s a teaser, produced by Now This:

It’s thrilling to see her strong voice and to have her emerge as a Voice from the global Down syndrome community.

The Down syndrome community is most often led by parents, who, while definitely passionate and committed to helping shift stereotypes about Down syndrome, don’t actually have Down syndrome.

As we all, we can’t ever know the experience of another, or know how it actually is to have something we don’t.

I’ll never know what it feels like to be petite and have long black hair, and I’ll also never know what it’s like to wake up and be able to hear and see (without using technology). I’ll also never know what it’s really like to have Down syndrome, so I’m grateful for programs like Maria’s that help me understand it a little more.

See all of her programs on La Prensa here.

Wearable Advocacy! Go For It!
The best Down syndrome t-shirts for Down syndrome awareness month

Watch it!

What People with Down Syndrome Are Tired of Hearing You Say!

This post is about Down Syndrome Awareness Month. It includes both easier and harder ideas on how to focus your attention in the direction of our community this month.

October is Down Syndrome Awareness Month

We are aware

We are aware that people with Down syndrome are the same as people without: deserving of equal rights, opportunities and privileges. We are aware of what features associated with Down syndrome look like, we are aware of discrimination and prejudice that is regularly leveled at people with Down syndrome.

We are aware that the world is not often kind to people with Down syndrome – that people with Down syndrome can suffer horribly at the hands of people who do not accept them. Those hurting hands can belong to relatives, to members of the justice system, to acquaintences or strangers. Yes, we are aware of this, and perhaps this is partly the fear that keeps women from choosing to have a child with Down syndrome, perhaps this awareness does more harm than good.

I want us to try to move beyond Down syndrome “awareness”. I want us to move into Down syndrome acceptance

Let’s try to put our awareness into action and actively accept people with Down syndrome. Let’s try and move two steps past our comfort zone, whatever that might be.

I have thought up some actionable items that you and yours can do in the course of this month in which we are making a focused effort to spotlight our community and individuals with Down syndrome. These are grouped together into levels: easy, medium and hard.

The easy level is something anyone can do. The require minimal effort.

The medium level is a little harder. The items in this group are items that require some effort, but have a bigger impact on the lives of people with Down syndrome and on our community.

The hard level is hard. But worth it. So if you really want to do this, hop on board!

All levels should your commitment to being an ally. We love you for it.

1. Easy Stuff: What Everyone Can Do! Things That Really Help with Down Syndrome Awareness

a. Show Your Love with T-Shirts

T-shirts are wearable advocacy.

You are showing the world how you feel and what you believe in when you don some Down Syndrome Pride gear, and some tee’s (like the Chromosome T, or the “greater than” T) give you ample opportunity to explain some of the basics of Down syndrome to curious folk who wonder why you you wearing cheeto-looking-thingies.

b. Give Money or Donate

If you feel like giving money, I’d like to personally suggest a few places:

NDSC

The National Down Syndrome Coalition has been doing AMAZING work!! SO. MUCH. GOOD> sign up for their action newsletter here, and check out their site. They are doing a tremendous amount for our community in Washington DC and elsewhere and need all of our help in these trying times.

Lettercase

They are the ones who produce the outstanding books on “Understanding a Down syndrome Diagnosis”. They do truly amazing work with outreach to physicians and expectant parents, and have recently released a Spanish-language booklet. Read more about their work here. The link to donate is here.

The National Down syndrome Adoption Network

This is totally grassroots and they literally accomplish life-changing feats on the slimmest of budgets. They can use support. The link to learn more about them is here. The link to donate is here.

Down Syndrome Research

There are few organizations that do great work with researching Down syndrome – there is still SO MUCH we do not know about this syndrome, that would be really helpful to know. The links between Down syndrome and leukemia? Down syndrome and Alzheimers? What about that zero-impulse control piece, or visual learning in individuals with Down syndrome?

Here are some organizations to give to –

Down syndrome Diagnosis Network

The DSDN has one super-fantastic goal: to get their information out to local organizations, local Down syndrome clinics, doctor offices, Local DDD office (or service coordinator), Therapy clinics, local welcome basket programs, etc. Why is this so important? Because they provide (both online and in-real-life) networks and support for families, and help with updating the information that providers use regarding Down syndrome.

c. Promote & Support Down Syndrome Related Businesses

Here’s a list of Down syndrome owned businesses linked here.

Tune into this list: support the businesses therein, they all have a connection with Down syndrome.

2. The Medium Stuff : Things That Require More Time or Energy for Down Syndrome Acceptance

a. Make a Friend with Down Syndrome

How many of us actually have a friend with Down syndrome?

Use this month as an opportunity to  take time to meet people with Down syndrome and open yourself to real friendship.

I am not talking about the prom-dance-thing; I’m not talking about going over to the Arc  or your local Down syndrome Association for teen or adult night once.

I’m talking about going a few times and seeing what sparks up.

Open yourself to genuine friendship.

b. The Kindness Calendar

Down syndrome Awareness Month Down syndrome Acceptance MonthLike making a friend with Down syndrome, I don’t think the Kindness Calendar is medium-hard at all – it’s pretty easy.

I’m just putting them both in this section as they will require time,

The Kindness Calendar is about focusing on kindness throughout the month. This includes self-care and kindness to our own selves, and spreading that outward and on.

There’s a downloadable, printable pdf linked here.

3. The Hard Stuff – Things that Really Make a Long-Term Difference and Help with Down Syndrome Acceptance

a. Put Your Skills to Use

Can you offer to teach a skill to a person or small group of people with Down syndrome? Perhaps they might like to learn how to knit, learn ASL, or how to blog? Photography, sewing, ceramics?

Are you great with money? Can you run  a course on that? How about working with people with Down syndrome and families on understanding ABLE accounts, benefits planning?

Think about your skill sets and figure out how and what you can contribute – reach out to your local EasterSeals, Arc, Down Syndrome Association, and commit some of your valuable time to teaching, mentoring, guiding and sharing your skill sets with your local Down syndrome community.

b. Hire:  Jobs, Internships, Work Experience

Talk to a vocational counselor from the Department of Rehabilitation, or EasterSeals, Arc or your local non-profit that serves people with Developmental Disabilities about providing an internship or work experience for someone with Down syndrome.

Jobs and job skill development can be with child care help. Assistance with cleaning. Chores. Bicycle repair. Gardening. Filing. It can be with absolutely anything that you have a need to hire someone for and which someone with Down syndrome has expressed an interest in doing. Think outside the box; we’re only limited by what we can imagine.

If you are an organization (not just an individual), definitely work through Department of Vocational Rehabilitation and read this post, which is chock-full of great resources.

c. Partners in Policymaking

Understanding how to effectively advocate as well as so many pieces of disability culture, the disability rights movement and so forth will literally change your life.

Partners in Policymaking has an ONLINE course in all of this. I can’t recommend this highly enough.

Down syndrome Awareness Month – Down syndrome Acceptance Month

The shift from awareness to acceptance begins with us.

Move past the awareness.

Open your arms to acceptance.

 

A Little Moxie

Down syndrome t-shirts are wearable advocacy, and I’ve got a smattering of the best Down syndrome t-shirts for you!.

Donning garments with bold statements that testify to our beliefs (and allow others to question theirs) is an easy way to help promote acceptance.

All the t-shirts I sell here support my site and the work that I do with disability, disability advocacy, resources and community-building. Your buying this gives you a tangible way to support something super while still making a statement!

The table below (“in this post you will find”) has clickable links to jump directly to a t-shirt theme you are interested in.

The Best Down syndrome T-Shirts

love counts chromosomes
love counts chromosomes

Love Counts Chromosomes

Love counts chromosomes… and loves them all!

This t-shirt challenges the idea that we love despite a chromosome count, that the chromosomes or number of chromosomes do not matter. THEY DO MATTER. And we love them.

Human Needs Not Special Needs

People with disabilities are HUMAN, with human needs. There really is no such thing as “special needs” given that every single human being has some need that another doesn’t. So… All needs are human.

i’mperfect

The difference between “imperfect” and “i’m perfect” is an apostrophe and space.

In the view of the social model of disability, we are all perfect. But we are seen as imperfect within the medical model. All we really need is to pause, take some space, and learn more. With that, we may make the shift from “imperfect” to “I’m perfect” 🙂

I never knew I wanted a child with down syndrome until I got one
I Never Knew I Wanted a Child with Down Syndrome

I Never Knew I Wanted a Child with Down Syndrome Until I Was Given One

Julie Kehm came up with this lovely thought which moved me as I was pregnant with my own daughter with Down syndrome. Here’s your chance to wear this thought and show the world how you feel about your child with Down syndrome

presume competence: the t-shirt to challenge notions of developmental disability
presume competence

Presume Competence

a t-shirt for your child or yourself to wear that challenges conceptions about developmental disability in particular, disability in general

Not an Angel

This is a fun shirt to poke fun at the “Down syndrome angel” stereotype! Available in all sizes, but focusing on kid sizes.

Keep Calm It's Only an Extra Chromosome T-Shirt

Keep Calm, It’s Only an Extra Chromosome

A playful shirt that rifs on the “keep calm” theme!

my kid has more chromosomes than yours! t-shirt for down syndrome
my kid has more chromosomes than yours! t-shirt

My Kid Has More Chromosomes Than Yours!

a t-shirt for your child or yourself to poke some fun at over-the-top competitive parents (plus, show some pride!)

god doesn't make mistakes t-shirt
god doesn't make mistakes t-shirt

God Doesn’t Make Mistakes

God doesn’t make mistakes – right?!!

We are all as we should be, ALL OF US

the lucky few down syndrome t-shirt
the lucky few down syndrome t-shirt

The Lucky Few Chevron Shirt

The “Lucky Few” is the triple chevron that faces upward, signifying 3 copies of the 21st chromosome: Down syndrome. It also represents solidarity, movement upward, strength.

the down syndrome chromosome t-shirt
the down syndrome chromosome t-shirt

The Down Syndrome Chromosome T-Shirt!

The t-shirt of the chromosome!

Straight up: THIS IS what Trisomy 21 is: the 3rd copy of the 21st chromosome! Perfect for some subtle awareness-spreadin’

It’s An Extra Chromosome, Not a Halo!

Lots of people think that there is a connection between angels and having Down syndrome. This t-shirt spells out exactly what Down syndrome is (- an extra chromosome) and what’s it’s not (- somehow angelic, coming with a halo!)

47 > 46 47 is greater than down syndrome t-shirt
47 > 46 47 is greater than 46 down syndrome t-shirt

47 > 46

47 is greater than 46 – a t-shirt that smiles at the greater count of chromosomes that Trisomy 21 (- Down syndrome) represents!

This post is about Down syndrome and breastfeeding.

It is written from my perspective as a mother. I breastfed my daughter with Down syndrome for 2 years, and breastfed my two typically developing sons. While I am pro-breastfeeding, breastfeeding was not an easy experience for me, nor did it come easily.

The purpose of this post is to encourage mothers of babies with Down syndrome to breastfeed and to provide some Down syndrome breastfeeding resources.

This post is NOT meant to shame anyone who did not breastfeed, because Fed is Best.

I just want to encourage other mothers to trust their gut and stick to what feels right for them and their baby, despite what medical professionals or even lactation consultants might be saying. I also want to encourage other moms to remember that our babies  with Down syndrome are BABIES FIRST –  they come with all the weird, wild an wacky combinations that all babies come with, and so do we.

Learning to breastfeed is a process, with or without the presence of an  extra chromosome.  We’ve got to remember that!

Please click on the table of contents below if you are looking for a specific component to breastfeeding a baby with Down syndrome, and click on the section that you are interested in.

Down syndrome and Breastfeeding

My Back-story of Breastfeeding Before My Daughter with Down syndrome

The story of breastfeeding my child with Down syndrome is a story that has a necessary prequel, the one about breastfeeding my first born (typically-developing) child:

My typically-developing firstborn son was born in the hospital as a planned C-section due to the fact that he was breech. After he was born, He had trouble latching. The lactation consultants on hand said that his frenulum (the bit of skin that attached your tongue to your mouth) was short and that was the root of the problem. The suggested that I either cut his frenulum or use a nipple shield.

Unable to bear the thought of hurting him, I chose the nipple shield. The lactation specialists said that it was fine, that using it would make nursing that much easier for him. That it was just a bit of plastic that wouldn’t cause any trouble at all.

I believed them…and over the course of the next 9 months, I saw my milk supply steadily dwindle. I never made enough milk to fully feed my boy, ever. I didn’t understand it – other women made plenty of milk and I simply could not understand why I couldn’t. I did everything – I took herbs to stimulate my milk production, ate foods that were good for supply building. I pumped a lot in addition to trying to nurse. But it simply did not happen.

Over time, I became convinced that it was the nipple shield. The only thing, you see, that was different from me and the women who were producing well was that bit of plastic: I was using it and they were not.

When I started to think about it, it made no sense that my milk could actually come in well – my senses were dulled with the plastic around my nipple – how could I really receive the stimulation that my body needed from my baby to produce more? Because it’s really through the aerola that the body picks up on the need to make more/less milk.

Micah was naturally weaned when I became pregnant with Ziggy – my milk supply completely dried up and Micah was quite happy to simply go for the bottle full time.

The Story of Breastfeeding My Baby with Down syndrome

I knew that my daughter Moxie was coming with Down syndrome.

Knowing that, I was completely determined that she be 100% breastfed for as long as possible. Starting out life with an intellectual disability was hard enough, I reckoned. Why not give her every advantage I possibly could? A home-birth, sans drugs (which might hurt her), coupled with as much breast milk as she could handle.

I had the home birth.

22 hours.breastfeeding my child with down syndrome

Nursing My Baby with Down syndrome

After she was born, she nursed, and nursed hard.

The next day, we were trying again and it wasn’t happening well.

I, having no real experience nursing a child naturally, was completely green. The midwife was intimidated by Moxie’s Down syndrome and said it was likely that because she has Down syndrome, she couldn’t latch well. She pulled out the nipple shield.

While I abhorred going that route again, I too was intimidated by Down syndrome. What did I know of anything? What if her latch really was weak? She had nursed what seemed to be hard the previous night, but how could I really tell, when I didn’t know about these things at all and people were telling me that babies with Down syndrome tend to have a weak latch?

So… I put the nipple shield on and tried that route, but Moxie steadily lost weight.

Breastfeeding My Child With Down syndrome
newborn Moxie

She had been born a bonny 8.8lbs, healthy as a round, pink peach.

My little plump peach slowly shrank and shriveled to 6.8lbs. 

Yes, she lost 2 whole pounds in one month.

Down syndrome Feeding Issues

Down syndrome feeding issues are well known on the internet – if you google, you’ll come up with pages of information on Down syndrome feeding issues. And trust me, by that time, I was very busy on google, looking all of it up.

I was waking up Moxie every few hours to feed her. I was pumping and nursing round the clock. I was trying to stimulate my milk production. I was drinking gallons of coconut water and fenugreek tea.

Nothing seemed to make much difference.

After calling La Leche League, a specialist came to my house to take a look at everything and help us. She did, and yet with all of her experience, could not explain what was going on, nor could she give me helpful advice on why my milk supply wasn’t increasing, or why Moxie was losing so much weight.

The La Leche League consultant called another consultant over, and both of them concluded that it “must” simply be a Down syndrome feeding issue, that it must be something to do with Down syndrome.

The next week, I suddenly became paralyzed with excruciating, crippling pain from my waist down in the course of a few hours.

Over the course of that week – the week  that I spent in the hospital all alone without my baby or family –  I hemorrhaged, had transfusions, innard-cameras, two uterus dilations and scrapings and a raging fever.

Ultimately, I was told that the midwives had left about 3cm of placenta in me– which had become infected.

That had been the source of my milk loss and inability to feed Moxie.

So, there had been no Down syndrome feeding issues; it had all been about placenta left in me after birth. The midwives had not known that placenta from a child with Down syndrome also has an extra chromosome, and that extra chromosome causes it to behave differently than “typical” placenta.

But no-one thought to look beyond Moxie’s Down syndrome at the time.

If she had NOT had Down syndrome, I wonder how things would have been different, and what types of questions nursing and lactation professionals would ask if a typically-developing baby lost 2 lbs in the course of their first month with their mother desperately trying to produce milk that just wasn’t fully coming in.

The Final Chapter in Breastfeeding My Baby with Down syndrome

When I came home, I was still being fed a solid diet of drugs and although the doctors said it was safe to breastfeed, they had never done studies on the effects of those drugs on humans. 

As such, I wasn’t going to give it a shot with my Moxie. So I pumped and dumped for one month while my tiny daughter was exclusively formula bottle-fed.

Finally. Finally: when she was a little over 8 weeks old, we tried to breast feed again.

****

I will never forget the feeling of being so weak. 

My body had been so crushed by the Placenta Incident, so whipped by the drugs, but the pain, so worn out from the process of healing and hurt that I simply sat there, with Moxie on my lap, and cried over her as I tried to get her to nurse from my breast. I remember how big tears fell from my eyes directly onto her small face, causing her to blink in surprise.

She howled with the breastfeeding effort. She didn’t know what to do with it. She pushed me away. She howled harder. She had no idea how to nurse, and I honestly wasn’t quite sure what to do other than watch some Jack Newman videosand try pushing my breast in her mouth. Again.

And I cried more.

Then tried again. And again. And again. And again. Sans nipple shield, every. single. time.

I tried so much, so often that sometimes I wondered if I was simply a glutton for punishment; why do this?Everyone said babies with Down syndrome had a hard time nursing. Why was I pushing it? I think breast is best of course, but FED is amazing, full stop. I am not against formula – it saved Moxie’s life for the first 2 months, after all.

In the end…it was just that I hadto. This was just something I had to go through and I had to know for myself that I tried as hard as I could – and if it didn’t work, I could put it in the bag and store it and reach for the formula knowing that was cool.

Finally – two or three weeks into the trying – Moxie caught on. Latched on. And never looked back.

She was exclusively breastfed until she was over a year old, with the exception of the introduction of solid food. She continued to be breastfed (and drink cow’s milk) until Monday, April 9th when we simply skipped the single daily nursing that we had dropped down to.

We stopped for the same reason I stopped with Micah: because my milk dried up with a new pregnancy.

breastfeeding and down syndrome
breastfeeding and down syndrome

Nursing my baby girl was a wonderful experience for me

Breastfeeding My Child With Down syndromeWithout a nipple shield and without placenta in me, I was fully capable of meeting all of her needs.

Moxie has been sick only a couple of times in her life – if only we were all so lucky! – and I give breast milk ample credit for its immunity-building.

Moxie is clever – she has a developmental disability, yes, but she is an extremely smart child with few delays. I think part of that is due to breast milk. She is secure, she is attached – again, I think that can at least partially be attributed to almost two years of nursing.

People have a myriad of assumptions about children with Down syndrome.

It is all too easy for new parents and those who are unfamiliar with disability and/or Down syndrome  to fall into the traps of thinking we don’t know enough, that surely those “professionals” know what they are talking about.

Even me: I am deaf and have worked in disability advocacy and the disability community for nearly two decades and yet I still completely went the route of trusting them and doubting myself.

That’s the driving push behind writing this post; I want as much information out there to help support mothers who want to breastfeed and who may be looking for support and affirmation that it can work for a baby with Down syndrome, and that it is the first course to pursue if at all possible.

Down syndrome Breastfeeding Resources

Down syndrome Breastfeeding Print Resources

 The Breastfeeding Book: Everything You Need to Know About Nursing Your Child from Birth Through Weaning – The Sears’ youngest child has Down syndrome, and there is a chapter in this book devoted to Down syndrome and breastfeeding.

– The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood – comprehensive, down-to-earth book about pretty much everything.

 

down syndrome breastfeeding resources

Down syndrome Breastfeeding Internet Resources

I combed through a lot of sites out there and only put the most relevant and recent content below:

Canadian Down Syndrome Society’s awesome free pdf that’s exclusively about babies with Down syndrome breastfeeding: Breastfeeding a Baby with Down Syndrome

Breastfeeding an Infant with Down Syndrome, from Children’s Hospitals and Clinics of Minnesota

Helping Babies Who Have Down Syndrome Learn to Breastfeed, by J. Renee Toth, posted on Motherhood International

Jack Newman, a Canadian doctor, was the most helpful to me in learning how to breastfeed my baby with Down syndrome. While not specifically about Down syndrome and breastfeeding, his videos and guides are clear, supportive, and really understandable. Jack Newman videos linked here.

La Leche League has such a great reputation and they have helped many, many people. I was not one of the mothers helped, despite turning to them with all 3 of my children. I hesitate to include this link, to be honest, because in reading through what the link contains, I feel like it’s perpetuating old stereotypes about our children. I mean, “often a baby with special needs is reluctant to take the breast..”?! They also go on about the “tongue protrusion” which just is not correct. But it’s your call. Link is here.

More stories about breastfeeding a baby with Down syndrome are found here on Down syndrome Pregnancy 

The power of community and asking questions to other parents: Down syndrome groups on Facebook

I went through the long list of resources on the internet and honestly, I just don’t feel like adding links for the sake of adding them. I don’t think anything else is as useful as what I’ve included in this post – either they are outdated by date, or they are outdated by content (one of the highest ranked sites in the “breastfeeding and down syndrome resources” on google linked to “Welcome to Holland.” Yes, really, and yes, I wish I was joking.

Anyway.

Again, this post is meant to be helpful and to encourage moms who want to breastfeed their babies with Down syndrome. While I do believe that breastfeeding has nutritional and emotional benefits that can’t be beat, the ultimate goal here is to feed our kids, and I think we need to be supportive of each other in how we determine (for ourselves) the best way to do that.

This post is about how to tell if your child with Down syndrome needs therapy. It is written from my perspective as a mother of a child with Down syndrome. That I am deaf and come from a disability-advocate standpoint, I am sure also affect the perspective from which I write.

How to Tell if Your Child with Down Syndrome Needs Therapy

Does your child need therapy? 

That’s such a loaded question in some ways, with the stacks filled with arguments that are culturally and socially based. From the moment our kids with Down syndrome are born, they are assessed, probed, weighed, measured and held up to the Medical Model of disability to see what they are lacking in.

The Medical Model of disability is really important in understanding where the medical system and our culture are coming from with regard to our children with Down syndrome.

The Medical Model of Disability

The Medical Model links the diagnosis to the body, with a clear call that disability needs to be cured. In other words, the Medical Model says that the person with the disability is the problem and needs to be fixed.

The Medical Model sees us with disabilities as fundamentally broken. 

The Social Model of Disability

In stark contrast to the Medical Model, the Social Model  views disability as culture, and sees value in disability.

The Social Model says that the body isn’t the problem, it’s the environment. If you make an environment accessible, if you remove barriers (both physical and attitudinal), the disability is not the lodestone that the medical model makes it out to be. 

Those of us with disabilities usually prefer the social model, because:

  1. it’s true: if you remove barriers and make the world accessible, disability really isn’t such a big deal and
  2. it’s a hell of a lot more empowering to view yourself as whole and as who you should be as opposed to some broken machine that needs fixing

Does the Social Model Say “No” to Therapy?

The social model says that disability in and of itself is fine. It’s the environment that needs fixing. But that doesn’t mean that tools shouldn’t be used to improve life!

Take myself for example: I am proud of being deaf.

I firmly believe that while being deaf can definitely be challenging in a hearing world, I like being deaf. I like my perspective and enjoy my world.

I use all the tools that I can: I use hearing aids, I use ASL. I lip read.

My subscription to the social model of disability does not preclude the use of hearing aids. I can be deaf-proud AND STILL use hearing aids and lip read. 

Down Syndrome, The Social Model and the Medical Models of Disability

Down syndrome has typically been included in the Medical Model of disability. It has been something viewed as needing to change, that people with Down syndrome should be more like people without Down syndrome.

The goal with Down syndrome is to make people with Down syndrome “realize their full potential” which is often code-speak for “as highly functioning as possible.”

This means the goal from the moment our kids are born is to make them more like typically-developing people.

From my perspective as a deaf woman, there are clear analogies here with the deaf community – the goal, after all, with most deaf babies born to hearing parents is to make us more like the hearing than the deaf. We are fitted with hearing aids or cochlear implants; we go through years of speech therapy, lipreading and are drilled and trained to be ‘high functioning’ deaf in an oral, hearing world.

The ASL movement is relatively young. We are now seeing value in striving to be less like the hearing and more like ourselves. We are deaf and no matter what type of hear-ware we might use (if any), at the end of the day, we take them out and our world is silent. It makes more sense to embrace that and to move forward from that platform of pride and honoring who we are, than it ever did to bend over backwards and try to be more like hearing people.

Because we won’t ever be hearing.

People with Down syndrome Will Always Have Down syndrome

No matter how much therapy a person with Down syndrome engages in, they will always have Down syndrome. This is a fact. That extra chromosome that causes Down syndrome can not be removed.

So you can use therapy as a tool – like us deaf might use hearing aids or cochlear implants – but it won’t ever change the fundamentals of the person.

Rather than trying to change that, it makes more sense to lean into and embrace the Social Model of disability by using the tools that therapy provides while learning more about Down syndrome itself, appreciating what what the syndrome brings to our world. and finding ways to accommodate it so that individuals with Down syndrome can be full accepted, contributing and included members of our society.

Our Story: Moxie, Early Intervention, Physical & Speech Therapy

I want to talk about our story for a bit, because all of these truths that I’ve just written about are actually hard-won.

When I first had my daughter, I knew nothing about Down syndrome and was bumbling about following what the doctors and the system were telling me. They said, “therapy!” and I jumped to it.

Early Intervention and Down syndrome

“Therapy for a child with Down syndrome is critical!” they told me, and that “early intervention” and Down syndrome were super-important for my daughter to reach her “full potential.”

You know, like, if I didn’t have a specialist come to my house 3 times a week and watch my kid have some tummy-time, she’d be sitting in a corner helpless and non-functional for the rest of her life.

I think that’s where the medical establishment gets us to buy into the Medical Model: we are so scared that our kid will somehow miss the boat and it will be all our fault. We didn’t do enough therapy; we let our child miss their tiny, narrow, sliver of an opportunity to reach their “full potential” and be more like us – without an intellectual disability – than not.

I bought into it too:

Down syndrome and early intervention

My daughter started early intervention at around 4 months old.

It was stressful for me having the therapists come over with their clipboards and notepads and observe and note everything my child was – or was NOT – doing. I was confused as to what or how any of what was going on was any different from what general good parenting was, because it sure looked the same to me.

I felt like there was so much focus on what my daughter could not do that it was depressing for me.

I ended up going to a different group, one in which there was also counseling for all of us depressed parents.

Meanwhile, my daughter started physical therapy.

Down syndrome and Physical Therapy

People with Down syndrome have low tone so physical therapy usually starts very young.

Down syndrome and physical therapy

When we first started physical therapy, I was adding up all of what was going with early intervention (- the assessments, stress, the depression from the negative assessments, confusion over what was actually being worked on or strengthened) and was finding it lacking. I was starting to lean on the side of quitting everything just so we could be happy.

Down syndrome and physical therapy seemed like a real joke, given that my daughter couldn’t even stand up!

But just going there was a blessing in disguise because our physical therapist had a niece with Down syndrome, and was very much aligned with the Social Model of disability.

Our physical therapist was only trying to provide my daughter Moxie with tools by which she could enjoy her world more. She was encouraging and motivating, always noting and highlighting Moxie’s accomplishments and positives. That felt awesome.

Right around this time, we started driving down to Mexico and camping for extended periods of time on the beaches there.

down syndrome and physical therapy

Moxie was crawling up and down sand dunes, crawling to the water, playing for hours in all that sand.  It was also in Mexico that she started cruising, standing up and walking while holding supports.

When we came back to the US, our physical therapist said that we were doing the best thing we possibly could for her development, that crawling up and down sand tunes and cruising in sand was helping to strengthen her pronation and ankles than the exercises she was getting in physical therapy.

I was encouraged with this, and started to ease off on following everything that the establishment was telling me to do with my daughter; I started listening to my own gut a lot more, and doing what I felt to be true and good for her as opposed to what someone else was just telling me I “should” do.

We continued with a modified physical therapy schedule for a year, then stopped completely when we left the San Francisco Bay Area.

Down syndrome and Speech Therapy

I have taught Moxie ASL all along, but I have been concerned about Down syndrome and Speech Therapy. When an individual with Down syndrome cannot be understood, it can be an actual life-threatening risk, as we have all learned.

With regard to Down syndrome and speech and therapy, I’ve been laser-focused on Moxie’s articulation and ability to convey her thoughts with speech, using ASL as back-up.

We lived off the grid (in a yurt to boot) for 4 years after we left the San Francisco Bay Area.

Down syndrome and speech therapy

Now, the off the grid and yurt-living piece had nothing to do with this, but maybe it does. I know that living and thinking so far outside the box has had an effect on her, just as the fact that we lived in a very rural, wild-west type of community on the Lost Coast of California.

The community itself helped Moxie – our 40-year old neighbor had Down syndrome. He was an intrinsic part of the community; a yogi, ASL teacher, school janitor, and respected artist. The fact that the community was used to people with Down syndrome being successful was huge for my daughter – huge! 

Added to that, an excellent speech therapist drove the 4 hours (round trip) to work with her, twice a month, as her IEP set up.

This, along with horse therapy had both her core and articulation being strengthened.

While all of that was awesome, nothing got Moxie talking like her younger brother learning to speak.

The Role of Siblings and Down syndrome

Siblings play a crucial role with regard to the development of an individual with Down syndrome.

siblings and down syndrome
down syndrome and therapy

In Moxie’s case, she is highly competitive, and always has been.

When she sees someone who is comparable to herself doing something that she – up until then – couldn’t do, she revs up and DOES IT.

When her little brother started talking, Moxie – who, up until that point, had been a kind of relaxed learner – started cranking up her words and sentences. She went from a few words to speaking full sentences shortly after her brother did.

Her speech therapist said that her brother and peers in school were going to be the best things for her in terms of motivation, and I know he’s right.

After this shift, we another shift: our family split up with divorce and we moved first back on the grid, to town. A few months later, we moved back to Hawai’i.

Where is 8-year Old Moxie Now, Developmentally-Speaking?

Moxie is in an inclusive 2nd grade class. She is reading and writing, completing math and science with modified lessons. That means that they make it a little simpler for her, and she might need to accomplish less work to be considered “on task.” She has an assistant and received occupational therapy once a week at school and speech therapy twice a week.

She just started Special Olympics.

down syndrome and therapy

Moxie is what I call a “Sporty Spice.”

She likes sports and has always been my more athletically-gifted child. She’s coordinated, has stamina, and enthusiasm for pretty much anything, physically-related. She’s a great swimmer and boogie-boarder.

down syndrome and therapy
down syndrome and therapy

She enjoys a close and loving relationship with both of her brothers.

A lot of people think that Moxie is “high functioning” – but I don’t think that’s necessarily the case. I think it’s pretty clear that Moxie has Down syndrome and my goal has never been to make her more like us without intellectual disabilities.

Rather, my goal has been to figure out what tools will help her live the life she finds most pleasing, and which will also help keep her safe.

I feel that all too often, the medical establishment and we in the Down syndrome community are quick to look at one aspect or another in a child’s development, and don’t look enough at the whole picture that makes up the “nurture” part of the package.

Factors that I think that are important to consider in my daughter’s life – factors that I think contribute to her development are:

Health:

  • No health issues
  • No hearing issues
  • No visual issues
  • breast fed for 2 years
  • home birth
  • no supplements or drugs of any sort
  • healthy food for the most part (but not organic)
  • co-sleeping

Family:

  • Brothers older and younger than her, close in age
  • Single parent household
  • Educated mom, middle-class, white privilege
  • Non-traditional environments (- off the grid, rural communities, lots of travel)

Other:

  • Good looking
  • Artistic
  • Physically coordinated

I firmly believe that her good looks and physical coordination have a role in how people treat her, and thus, in her overall development, so had to mention that (even though it felt a little weird).

I also believe that things like being breast fed, co-sleeping, eating healthy food have something to do with development (how much, I’m not sure, but I know it’s something).

Health issues are an integral part of the equation.

Does Your Child with Down syndrome Need Therapy?

We’ve covered the Medical and Social Models of disability. I’ve told you some of our own story. I’ve included the things that I think are important considerations in how a child (with or without Down syndrome) develops.

I think it’s time to get to the question that drew you to this post in the first place: how do you tell if your child with Down syndrome needs therapy? And what type of therapy makes sense for your child?

First of all, I think it makes sense to really think about where you are coming from in this: are you being pushed by anyone to engage in therapy? Are you wanting to make your child more like someone without an intellectual disability, or are you wanting to give your child tools?

There is no judgement in asking these questions.

There is, however, a need for us all to be honest with ourselves – to ourselves – in our answering of the questions, because the honest answers will tell us a lot about about what type of therapy makes sense, if any, for our children.

Also, closely examining the “nurture” aspects of what is going on with our children will also help us.

Does Your Child:
  • Have siblings? And if so, are the siblings close in age? Typically-developing?
  • Live in a household that access to resources?
  • Are you/your partner able to implement things that are typically regarded as helpful in child development on your own?
  • Does your child have health issues? Hearing/visual issues?
  • What type of environment is your child in? Creative, supportive of risk-taking, able to move, explore?
  • What is your child’s personality like?
  • How does your child learn best? Through imitation or hands-on; visual? Aural?
  • How well-regarded are the therapists and the services in your area? Have you met them? Observed them at work? What did you think?

These are questions to ask yourself with regard to therapy and your child. I think the most important question is that of health: if  your child  has health issues – heart, respiratory, seizures, or any other significant health issues – they are focusing on their HEALTH. Therapy doesn’t have a prominent place on the table when the survival of the child is at stake.

Milestones

You cannot compare children who have experienced health issues with children who have not.

So, throw out the charts when you have a child with health issues. Just don’t even go there. It’s not worth it, unless you want to add what YOUR child has gone through to the lists of the typically developing or kids without health issues but who have disabilities (read: having a disability does not make you unhealthy).

Even when a child is healthy, it remains unclear to me what use milestones have, other than to freak parents out and create a system of panic and comparison. I mean, are we using them to “get” our kids to reach mainstream goals that our kids will actually only reach when they are truly ready to anyway?

What’s the point?

So, Does Your Child Need Therapy?

My advice to parents just starting out and who are trying to answer that question of “does my child need therapy???” is to get to know your child.

Spend time really watching your child, figuring out what their learning style is.

Think hard on some of the questions that I’ve asked here, think about your own personal prejudices and stereotypes regarding intellectual and development disabilities.

Then try and meet your child in that happy space where they can progress.

I think establishing a strong support team is important – people to give advice on the pieces you are not familiar with (in my case, the physical/speech aspects), but I’d caution against anyone that does not truly care for your child or anyone who comes from the Medical Model – I think in their lack of care, or in their philosophy regarding disability, they have the potential to cause more harm than good.

And even if something looks and sounds great, if it doesn’t feel great and if your child (or you) don’t enjoy it, it’s just not worth it.

This post is about best Down syndrome book resources – from memoirs to resource books. It’s intended for parents and professionals working with people with Down syndrome. The ones that I most highly recommend I have put an * before. Remember: your local library should offer most of these books, and if they don’t, you can request it for free. Please add your own recommendations in the comments so we can all benefit from your suggestion!

Disclosure: There are some affiliate links below, but these are all products I highly recommend. I won’t put anything on this page that I haven’t verified and/or personally read. Please read my disclosure page for more info.


Down syndrome book resources: some parents feel like they can never get enough.

That makes sense, given the fact that Down syndrome is still not fully understood, and that for most of us parents, our child with Down syndrome is our entry into the world of Down syndrome, developmental and intellectual disability.

Our child is our guide, and wanting to understand more, we seek out all of the books we can get our hands on.

Best Down Syndrome Book Resources as Follows

Down Syndrome Related Books on Practical Skills and Training

* Supporting Positive Behavior in Children and Teens with Down Syndrome

Gross Motor Skills in Children With Down Syndrome: A Guide for Parents and Professionals

Fine Motor Skills for Children With Down Syndrome: A Guide for Parents And Professionals

Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals

Babies with Down Syndrome: A New Parents’ Guide

http://downsyndromepregnancy.org/the-pregnancy-book/ – free downloadable book + ripping site with resources

Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges

The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles

Down Syndrome and Sexuality

Teaching Children with Down syndrome About Their Bodies, Boundaries and Sexuality

When Young People with Intellectual Disabilities and Autism Hit Puberty: A Parents’ Q&A Guide to Health, Sexuality and Relationships

The Girls’ Guide to Growing Up: Choices & Changes in the Tween Years

The Boys’ Guide to Growing Up: Choices and Changes During Puberty

Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities

Free Canadian Down Syndrome Society Mind & Body pdf

Down syndrome and Education

Teaching Math to People with Down syndrome and Other Hands-On Learners

Teaching Math to People with Down Syndrome and Other Hands-On Learners: Book 2, Advanced Survival Skills

*Teaching Reading to Children with Down syndrome: A Guide for Parents and Teachers

Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion

Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

Wrightslw: All About IEP’s

Collections of Stories about Down syndrome and Parenting

* The Parent’s Guide to Down syndromeAdvice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood

Reasons to Smile: Celebrating People Living with Down Syndrome

* Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives – 10th Anniversary Edition (updated, with more stories) – this is a MUST-read

Gifts 1: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Gifts 2: How People with Down Syndrome Enrich the World

Adults with Down Syndrome

Memoirs and Personal Stories About Down Syndrome

* Up Syndrome (a memoir by a woman with Down syndrome)

* The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery

* Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic

* The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit

* Life with a Superhero

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome

Sun Shine Down

Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny

Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome

Choosing Naia: A Family’s Journey

My Heart Can’t Even Believe It: A Story of Science, Love and Down syndrome

4 Years: Essays with a Little Moxie

An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter

The Lucky Few: Finding God’s Best in the Most Unlikely Places

Reflections from Holland: A New Mother’s Journey with Down Syndrome

Not Always Happy

Fiction Related to Down Syndrome

The Unfinished Child

I hope this collection of the best books about Down syndrome has been useful. Please remember to not let cost deter you from reading what is useful: ask your local library to stock up on these titles if they don’t carry them, make sure your local Down syndrome association or group carries them. Recommend them to your child’s school (their IEP might pay for some).

For more information and to connect with other parents, don’t forget to read my super-comprehensive Down Syndrome Resources Guide my list of Facebook Groups Related to Down Syndrome  and of course my long list of free stuff for kids with disabilities.

This post is about the politically correct term for disabled and politically correct term for special needs. It’s for everyone out there like my friend who asked me to write this post because she was just confused by all the talk out there about what to call us!

So here we go.

The Trajectory of the Disabled

I’ve been a person with a disability for most of my life, and a member of the Down syndrome community (thanks to my daughter!) for 8 years. In between my life lived with disabilities and being a parent of a child with a disability, I’ve seen an awful lot of upset over words that are directed towards the disability community, however inadvertently. I myself have been one of those that have been upset.

It happens something like this with the Down syndrome community:

Someone famous says something offensive (- usually involving the word, “retard”)

  • The Down syndrome community bellows
  • The famous person or situation or whatever apologizes
  • The Down syndrome  community simmers down.
  • …and repeat

The Greater Disability Community:

With the greater (cross-disability) community, it’s more of a matter of never ending-ness. It’s the constant little pin-pricks of the “handi-capable”, “special needs”, the references to “wheelchair bound”, and the “differently-abled.”

Everyone is pretty sick of it. The Down syndrome community is sick of it, the greater (cross-disability) disability is sick of it, and there we go.

What is the Politically Correct Term for Disabled People?

I know – just like most of you do as well – that there is a certain amount of weariness felt by members outside of our community.

That is, people outside of our community who care about us and our kids, people who want to be our friends and allies, people who want to do and say the right thing.

And the weariness easily switches to wariness.

Like, nervousness about saying something offensive.

When is a word okay? How is a world okay? If the word is okay with YOU, will it be okay with THEM? Is that person over there going to jump on me?

But wait – YOU said it was okay, YOU say that yourself -? Arrrrrghhhh!

I completely get it and I don’t think there are easy answers because I think so much of this depends on individual preference. There are no universal agreed-upon guidelines. That makes it tricky, you know, for allies to the disabled/Down syndrome parent community.

They say “people with disabilities” and you say “disabled.”

But that girl using a wheelchair says “gimp” or “crip”.

You are not a “person with deafness”, you are a “deaf person” but Moxie is not a “Down syndrome child”; she’s a “person with Down syndrome.”

It’s person first language…until it’s identify-first.

That is, it’s person-first language – a person with a disability – until the person sees disability as an identity, then it becomes identify first.

Identify-first is: deaf person, blind person, disabled person.

Then you get the really fun stuff: Archaic Words!

Those are words that have evolved but still carry some of their original meaning.

Moron, idiot, cretin, mongo all fall under that – as well as retard. So, what do you do? Do you say none of the words? What if you want to use the actual meaning of the word in a correct context, like “retard growth”?

What if you forget?

What if you never knew?

What if you SUCK and just MESS UP and someone catches you and you are proved to be a COMPLETELY INSENSITIVE and HURTFUL HUMAN BEING?!!!!!!

Oh, you monster.

YEAH.

No easy answers. I don’t know what to say, really, because I know if I tell you something, someone else will be telling you something different.

And then the person over in that group over there is going to tell you it’s all balderdash anyway

So, what IS the politically correct term for the disabled? “Special Needs”?

No. Don’t call us “special needs.” Our needs are not “special”, they are human. With that in mind, some basic guidelines for politically correct and the disabled:

  1. “Special needs” WAS an educational term, not a disability term. Now, it’s just a term that you should be staying way the hell away from  (see this post)
  2. “Disability” is a particular way of seeing, hearing, feeling, thinking, moving, learning, sensing, being. It’s not negative. It’s a way of experiencing the world.
  3. Nothing about “disability” indicates “ability” (see this post)
  4. Saying ‘disabled’ is fine; ‘person with a disability’ is fine too, but see how the person wants to be referred to as. Roll with their example.
  5. When you don’t know… ASK

Originally published on June 26, 2015

Many years ago, I took care of an old man with Alzheimer’s.

For over six months, I fed him, gave him his showers, dressed him, kept him company, wiped his butt, took him for walks.

Fended his ‘crazy’ spurts – like when he tried to hit me all the way out of the house, then locked me out and was laughing maniacally through the window (oh yes. Ha. Ha. Ha. ).

the old man

I took care of him because in the initial interview, I took to his wife – I really liked her. With dark circles under her eyes, she was completely overwhelmed, struggling to care for him 24/7.

But man…. the love she showed her husband! The tender way she looked at him! He had no idea who she was but still. She didn’t skip a beat. I wanted to help her. So I joined ship.

his wife

That period taught me a lot, you know. I was in such a raw state in my own life and self that I could not bear to be touched.

But this old man could sometimes only be soothed by my holding his hand. I’d have to hold his hand and get to this place of stillness inside myself and let that energy come across…and only then would he quiet whatever agitation might have stirred up.

But somehow in that all, he taught me how to hold hands. He taught me how to open up to other people again from a trusting heart space.

****

I’d watch him for hours as he gazed outside.

He saw things that I didn’t. I wondered what they were.

the old man, looking out the window

I’d wonder if his glasses were magical, that through them he could view other worlds. I’d wonder at the workings of his mind. The path of emotion that he walked upon.

You could say he was suffering, but while I’ll never know for certain, I don’t think it would be true. He looked just fine to me. His mind was almost gone to another place, that is true, but for the most part, he seemed happy and healthy.

The people that really could have been suffering in this were his family. His many children. His bright wife. But to suffer or not was their choice and they chose to not.

They consciously chose to take his Alzheimer’s in stride and learn and grow as a familial unit. Bond ever-tighter.

To request help when they needed it (enter me), but to form a net of pure love and catch this man who meant so much to them.

Alzheimer’s was a tragedy in that it took this man, while alive, from his family.

It was a gift in that it allowed them an opportunity to grow – in spirit, as a family – that they may not have had otherwise. Who knows? But they saw it that way, they took it that way and let me tell you: it had some results.

They were lovely people.

Now, my daughter has an extra chromosome.

A lot of people like to say that she’s afflicted, that she’s suffering from the Down syndrome.

I don’t know if she is. She doesn’t seem like she is.

 But what do I know?

Maybe this is the face of “suffering” and “affliction“?

I like to think that she’s a maverick spirit that wanted to experience the world from a different perspective.

This little girl will never fit into a box; any box. The very nature of Down syndrome means that you don’t know what is going to happen.

I need to love her as she is. In this very moment. With the future as it unfolds, however that may be. I think this is worth learning. And so I thank my lucky stars that this person is in my life.

my little Maverick. In front of the big painting of the Old Man, looking out into his garden through his magic glass and seeing his young self out there

(originally posted on April 9, 2011)

How to Keep Your Bolting Child Safe

Bolting is very common with kids with Down syndrome and Autism. It’s also common with some kids with other disabilities, and it’s different from just “running away,” – it’s running away without conscience, with a complete disregard for safety or caution, almost an inability to stop. Some people call it “eloping” and others simply “running” but for this post, I’m going to call it “bolting.”

How to keep your bolting child safe is one of the biggest concerns for many parents of kids with disabilities. I know; I’ve been in that particular place of terror one time too many myself. It’s absolutely gut-wrenching, and I think only another parent of a child with a disability really gets it.

I initially wrote this post 5 years ago after my then-3 year old daughter with Down syndrome figure out how to undo the door lock, slipped out of the house, under a gate and was found wandering around the street trying to cross to get to the big playground.

I have updated the post with the most current tools that we parents have. There are affiliate links in this post – and all that means is that if you buy something using a link here, Amazon or the company will give me a percentage but you will pay no more than you would have. Not all of the links are affiliate. Nothing is listed here that was not used by me or recommended to me, and nothing is listed here for any reason other than to help you.

Without further ado, let’s get to the tips!

Top GPS Tracking Devices

I really like this option, personally. There are a lot of variations on the same theme – attach something to your child and an alarm will blare when they have gone beyond a set distance from you. AngelSense also comes with a voice monitoring option (to listen in).

a. AngelSense GPS Tracker for Children with Disabilities – this has the solid gold stamp. It’s been around a while and has stellar reputation for tracking our kids.

In addition to the GPS, it has a ‘listen in’ voice monitoring option. This means that if you have any concerns about what’s going on around your child at school or throughout the day, this would be a way to assure yourself. It is can be expensive though, and requires a monthly fee (after the first year which is included in the device price). Right now there is a summer sale happening (about half price).

angelsense tracker

b. Jiobit: This new whiz-kid in the GPS tracking community – apparently doing what AngelSense does, but for far less money (and without the listening-in option). It hasn’t been out for long so there aren’t a lot of reviews on how well it works over time, but it is fast-becoming popular.

c. Gizmo LG Gizmo Pal 2 Blue (Verizon Wireless) – this is just for Verizon, but it looks great. It’s under $200 with no subscription service (other than your normal phone one)  and will locate the child.

d. CMKJ Smartwatch for kids – this looks simple, straightforward, inexpensive and kid-friendly. Waterproof, with GPS.

e.   AppleWatch. For a younger child, the band can be removed and the watch head placed it in a waterproof pouch as a necklace or clip. Use the “find my phone” feature or “locate family”.

For an older child, it could simply be worn as a watch.

Identification Wearables

According to the Police, only phone numbers, not names should be listed.

a.: I liked Road ID Anklet a lot . It’s great because it goes on the ankle and looks like it will pack a lot of information on that little plate.

b.  ID Bracelets are a great option for kids that like jewelry .

Sound & Flashing Light Alerts

a.  A lot of people seem to use Door Open Chime Alarms. It’s simple: the alarm goes off when the door is opened. You can program them and get them to stop/go. They are inexpensive and seem to be easy to install.

Check out the version that is better for us deaf, thanks to flashing light alerts and the option for every loud volume and/or vibration with Central Alert CA-360 Combo 2 Notification System

b.  Squeaky Shoes This is something really simple, but if you can hear the high pitch from the squeak and if your child is wearing these, you’ll be able to have an idea of where your child is.

Physical & Visual Barriers

For the truly savvy kid (read: YOUR KID), gates aren’t likely to be anything more than a hurdle. It’s going to slow them down but not stop them. Still, when you are dealing with kids as fast as ours, a hurdle is still a desirable thing, right? There are a ton of gates out there, here are 3 types that caught my eye:

a.  Extra Tall Gates: My friend sent methis linkto some gates that she said were great with her child. They look super.

b. Tension Mounted Anywhere Gates These are what I went for as I need to have something that is portable, something that doesn’t need to be installed with a screwdriver.

c.  These Retractable Driveway Guards are great because while they will NOT stop our kids from going, they serve as a bright visual reminder of how far to go. Easy to install, portable.

d.  Deadboltsare a must for any family with a child who might bolt. If you have a child with a propensity to escape, GET ONE NOW.

There are hundreds out there to choose from; this is just one that came recommended by a friend.

Simple Solutions While Outside

a.  I know, I know. Putting a Monkey on Their Backs Harnesses  is in essence a leash on your kid isn’t attractive and makes you feel like the crunchy Berkeley parents are going to spit on you and call CPS. But what’s better – that or calling the Police yourself because your kid ran too fast through legs in a crowd and you lost her?

 NOTE: I initially only got my daughter to wear this after a lot of effort. Her big brother (and superstar) wore it around the house to help out (= make it desirable). She ended up loving it, which easily paved the way to the next step, see below:

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b.  I went and bought anextra-large dog collar with a retractable sturdy leash when my daughter outgrew her monkey-harness. The extra-large collar will fit around her waist like a belt and I simply attach the leash to her waist.

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fun neon clothes from Target! Click for more

c.  It feels a little obvious, but: Neon Clothes.. I mean, if you dress your kid in neon, it’s a lot easier to see them. Neon clothes are kind of “in” right now, so it’s a good time to stock up on some cute designs (green shirt here links to Amazon; pink shirt at left links to Target 🙂 )

d. The BOB Revolution is going to take your child with Down syndrome far past 5 years old, and it’s worth the price.

Read my post on the BOB Revolution – I have a double BOB myself, for my 8 year old daughter and her 5 year old typically developing brother. Pricey but definitely worth it.

keep your bolting child safe
BOB Duallie: holding my 7 year old runner with her 5 year old brother. Click for my full review

In Sum: How to Keep Your Bolting Child Safe

Like most other parents of a bolting child, I’ve experienced those moments of sheer terror, not knowing where my child has run off to. I’ve also had the moments where she is sees something interesting and is about to make a break for it, cars be damned. Heart in my throat, I’ve run faster than I ever thought I could, and I’ve been lucky.

We don’t have to rely on luck though. Not when there are tools like the ones above that we can employ,

I wanted to mention two more things:

a. Project Lifesaver: connected to a regional saving service (ours is the local fire department). Check it out through the link there.

My service dog and my daughter

b. Service dogs: I had a hearing dog and my dog ended up helping me tremendously with my bolting daughter. Kids with Down syndrome, autism and other disabilities qualify for a service dog, so it’s worth looking into your child having their own dog.

Good luck, and if you have any questions, please don’t hesitate to reach out. If I don’t have the answer, I’ll refer you to someone who will.

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Keep Your Bolting Child Safer

TrackerCost Pros of TrackerCons of Tracker
AngelSense GPS Tracker $$$$Stellar record of being a reputable GPS tracker. Listen-in options.It's expensive
Jiobit Tracker
Jiobit
$$$Clips on to anything, easy to useNew (doesn't have a long record of tracking kids)
Gizmo $$$Like a watch, great for older kidsVerizon-only
CMKJ Smartwatch for Kids $$Simple watch with GPSTrack record is not extensive
Apple Watch $$$Integrates well with existing family Mac systemsMay require some macgyvering (remove watch band for younger kids, put in waterproof pouch)
Road Tags
$Wrist or ankle versions, easyCan potentially be removed by child
Door Alarms
$Will alert you if the child tries to get out through the door. Can also be used on windows
Door Alarms with Flashing Lights $$Can connect with windows and doors and will flash alerts as well as higher volume
Squeaky Shoes $Helps you locate your child when s/he is wearing themOther children might be also be wearing squeaky shoes
Extra Tall Gates $Will help slow your child downYour child will figure out how to open it after a while
Tension Mounted Anywhere Gate $Portable, easy to install; will slow your child downYour child will figure out how to open it at some point
Retractable Driveway Guards $Portable, easy to install, excellent visual barrier for kidsVisual barrier only
Deadbolts $Will keep the door locked from your child
Stuffed Animal Harness
$Cute, easy to use and will keep your child with youThey will not be strong enough for a stronger bolting child
Extra large dog collar and retractable leash $Strong and useful for years. Use the collar as a belt and retract the leash.
Neon clothes $Fantastic visual aid for parentsother kids might be wearing the same color
BOB Revolution $$$$Will last longer than any other stroller for a child with Down syndrome, and can cover any terrainPricey

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This is the ultimate guide to the best carriers for a baby with Down syndrome!

This post was written with the advice from many, many mamas (and some papas too!), and all carriers in this post came recommended by families who actually used them with their babies with Down syndrome.

There are affiliate links in this post, which means if you buy a carrier using our link, we will get a small percentage of the sale but you pay no more than you would have had you bought the carrier using another link.

Thanks for helping me to help support you!

Babywearing has never been more popular in recent times, and for good reason: it’s a practical way to transport a baby, and it allows the person carrying the baby freedom of movement.

It allows for easy breastfeeding, constant nurturing and comfort. It is inexpensive and sensible. It provides the baby with touch, loving interaction and an opportunity to organize their environment and strengthen their muscles

There are a plethora of carriers for babies out there, and the question of which carrier will be right for whom is always something a new parent faces. This becomes a little more complicated with the presence of Down syndrome, and some of the unique considerations that babies with Down syndrome have. So, let’s talk about those considerations.

Best practices in researching the best carriers for a baby with Down syndrome

Things to Be Aware of With Infants with Down Syndrome

  1. Low Tone (Hypotonia)

Infants with Down syndrome – and indeed, most all individuals with Down syndrome – have low muscle tone (hypotonia), and loose ligaments.

What this means:

In layman’s terms, this means that most babies with Down syndrome will feel floppy when you hold them – their muscles don’t have a great deal of control.

This means that they often need more support to hold themselves upright, and may tend to slump down in a baby carrier.  We need to be sure to choose carriers that supports their upper back as well as their tailbone through the base of their neck.

It also means that we need to be careful as we hold them in a carrier so that their ligaments don’t stretch further. We want to keep the ligaments together. These are the ligaments in the hips (especially) as well as in the neck.

2. Greater risk for respiratory problems

What this means:

Because babies with Down syndrome are at a greater risk for developing respiratory problems, it’s very important to follow safe airway practices in carrying them.

These practices may need to continue beyond the normally recommended three month period.

3. Loose Joints

Infants with Down syndrome have increased joint laxity – loose joints. This means that their joints are more flexible.

What this means:

The normal spread-squat in a child carrier of approximately 90-100 degrees may not be the best for a baby with Down syndrome. Keeping the baby’s legs closer together will help prevent hip dysplasia (- dislocation of the hip joint).

4. Slower Growth

Children with Down syndrome usually grow more slowly than their typically-developing peers.

What this means:

The carrier will be used for longer than it would for a typically-developing child. This means that paying attention to the low tone and loose ligaments is more important than ever – it will really make a difference in the hip development of the child.

The physical pieces are important with our kids, and should definitely be taken into consideration as we discern the best carriers for a baby with Down syndrome.

The short list of options in the table below should be checked by your child’s physical therapist or physician for your child’s unique needs.

But bear in mind that while choosing your child’s carrier might be more involved when your child has Down syndrome, baby-wearing is still usually the best option! Baby-wearing provides your baby with so much that is virtually impossible to gain unless your baby is in close physical contact with you throughout much of the day.

With that in mind, here are popular options for carriers.

Best Carriers for a Baby with Down Syndrome

Baby Carriers

Carriers for Babies with Down Syndrome
Carrier PriceHip/Joint
Support
Full Body
Support
Multiple
Carrying Positions
Length of Time
(to Use)
Beco Gemini$180NoYesYes - 4 positionsBirth - 35lbs
ErgoBaby$126 Yes, with the infant insertYesYes - 6 positionsBirth - 45lbs
Baby K’tan$50YesYesYes - 5 positionsBirth - 35lbs
LILLEbaby Complete$120Yes, with the infant insertYesYes - 6 positionsBirth - 45lbs
Tula$160Yes, with the infant insertYesYes - 6 positionsBirth - 45lbs
Moby Wrap$35NoYesYes - 2 positionsBirth - 35lbs
Ring Sling$35 to $97NoYesYes - 2 positionsBirth - 35lbs
Boba Wrap$40NoYesYes - 2 positionsBirth - 35lbs

This table makes it obvious that there are some really great carriers out there for our babies with Down syndrome.

One thing to note in many of these is that the infant insert is a real game-changer. The insert is basically a little stool that you sit your tiny baby on and allows them to nestle in the carrier with their legs closed. This prevents anything negative happening with their joints or hips.

Another great thing to note is that most of these carriers can easily be purchased – and returned – online. It’s also easy to add them to your baby registries.

Good luck! We look forward to meeting your little one!

I’m noticing a silence after I tell people that Moxie has Down syndrome. Since I usually “tell” people by writing and the “silence” is them not writing back as they usually do, I could be wrong. Maybe they are just busy.

But I think they don’t know what to say. I get it. I’d be the same way if a friend wrote and told me that her little daughter has Down syndrome… am I supposed to congratulate her? Offer condolences? Ignore it and delve into celebritrash gossip? I might very well not write back, not knowing the best course of action and not wanting to offend.

So I thought I’d tell you what I’d like to hear you say.

I want you to understand that for me, Moxie having an extra chromosome is about the same as her having my fair skin. I’d rather she didn’t, but the fact that she does is far from the end of the world.

There are things to appreciate about having fair skin.

As I learn more about Down syndrome, I’m sure I’ll find things to appreciate about it too. Just as there are things that I appreciate about being deaf (– like the ability to turn off the world – not to be underrated when kids throw tantrums).

Understand that I got the perfect baby for me and that I wouldn’t trade her in if I could. I’ll take the extra chromosome since it’s a part of her package, and I love – no, adore – that parcel.

So just say, “oh”.

Or that you didn’t know.

Or tell me about your uncle that had Ds and that you loved him.

Or tell me your real thoughts about it. I appreciated it when a friend of mine responded to my email about Moxie by saying that one of her greatest fears has always been to have a baby with Down syndrome. That’s honest, and I understand. It was my greatest fear too.

But please don’t say you are sorry because there is nothing to be sorry about. I chose to have this baby and I love her more than my life.

And please, I beg of you, don’t say something along the lines of special people for special babies. Or anything like I’m the perfect mother for her. Or that it’s great that I have this background in disability. Or anything at all about ‘angel babies’. That’s just not part of my faith-pack.

Tell me that you want to meet her, hold her, kiss her plumply marvelous cheeks, gaze into the deep blue pools of her eyes. Squish her delightful little legs and hold her hands. Be just as excited about little Miss Moxie as you are about any other baby. Tell me where I can find a baby-sized tutu (preferably pink), cuz I’m looking for one.

Be happy for me. I got what I wanted.

A sparkly, beautiful baby girl.

PS

– A year later:

We got the tutu

This post on the best stroller for a child with Down syndrome is NOT sponsored but there are affiliate links in it. I’m not writing this post as an ad; I’m writing it because I really do want newer parents to know this is the best rugged, long-term, high-weight-capacity stroller out there.

The Best Stroller for a Child with a Disability

The best stroller for a child with a disability is obviously going to need to be a fit for the child’s disability. For the purpose of this post, by “disability” I simply mean, “a disability that necessitates using a stroller for a longer period of time than is customary for comparative ages.” That may cover Down syndrome, autism, cerebral palsy and so forth.

My Story:

When I was pregnant with my daughter with Down syndrome, I  went to a park to meet a mom of a child with Down syndrome, and the child herself. They were lovely people.

The child bolted – it was the first time I saw bolting in action – and I admit I thought the mom was over-reacting at the time (little did I know how bolting would later shape my own life…). After the mom had raced and caught up with the child, the child was plunked in a stroller and strapped in. The child was 7 years old.

At the time, I understood plunking the child in the stroller, but I did not understand bolting. I also clearly remember thinking that stroller – a McLaren umbrella type – was too small for the little girl – she looked squished in it.

Fast Forward 7 Years

My own daughter is 7 years old now, and she bolts. She also ‘flops and drops’ occasionally.

I  travel a lot with my kids, and get out, go. There is not a weekend that goes by in which we don’t go someplace, be it the beach, forest, river or just long walks down fun trails.

The Best Stroller for a Child with Down Syndrome

Given that my daughter with Down syndrome bolts, flops n’ drops and is not ready to ride a bike, I knew I needed a stroller with a lot of room to grow into, a high weight capacity, and rugged durability to satisfy both the exigencies of Ds and my own personal ‘get out and go’ needs. The BOB Revolution is the only stroller that I have found to satisfy both needs.

BOB Revolution Pro Duallie Stroller and Disability

We had the BOB Revolution initially with my (typically developing) firstborn. My (then) husband was a bicycle mechanic and the BOB was something that his bike shop sold. We got it at cost.

Now, the fact that bike shops sell the BOB says a lot about the BOB. It’s built like a rugged mountain bike, with the suspension, shock absorbers, etc. You can use bike tires with it, no problem. We used that stroller for SEVEN YEARS – in the end, it died after we were hauling it around Angkor Wat in Cambodia with all 3 kids on it.

I turned to the BOB double, which is called the “duallie”.

The BOB Revolution Pro Duallie Stroller is like a steroid on wheels. My two youngest plopped right in – Moxie, who has Down syndrome, age 8 and Mack, who is typically developing, age 5. The stroller doesn’t blink; their weight is nothing, and I can easily use it for some time.

Other Strollers for a Child with a Disability

Other strollers will work of course. I’m not trying to say that the BOB is the only one out there!

I had a  for a while and really loved it while traveling in urban areas, New York City in particular.

For 2 kids, that thing was awesome (moveable seats! a single streamlined carriage! huge underbelly for storing stuff! folds flat!). But the kids outgrew it pretty quickly – the seats are much smaller and can’t handle as much weight.

Why I Will Only Recommend the BOB Revolution for another Parent of a Child with a Disability:

Strollers are hella expensive these days. A good one is Pricey (yes, with a capital “P”). When you get a stroller, you want to make sure it will last a long time, especially if you have a child with a disability and know you will likely need it longer than you might if your child didn’t have the disability. It’s an investment.

The Best Stroller for a Child with Down SyndromeSince the stroller is really an investment, put it on your shower list or office/church/friend registry so others can help chip in, and make sure the stroller you get will be something that can actually carry your child comfortably past 8 years of age. I have not actually seen any stroller except the BOB Revolution capable of doing that, and I myself only own a duallie now.

 

Some things to note:

  • The single BOB is more sturdy than the double. But that does not mean that the double isn’t sturdy; basically, it means that the single is a tank and the double is a jeep.
  • It costs a lot. You have to buy the snack trays and your own drink holder separately. If you get this when you are about to have your second/third child, you can put the baby in it AND the toddler and they will continue to use the stroller until they are both well past 5 years old. I fooled around with lower-cost options and ended up regretting it. I should have just bought this one (more expensive but far superior) stroller to begin with.
  • It’s wide, but NO WIDER THAN A WHEELCHAIR. So if it’s a hassle getting it in somewhere, you don’t need to apologize; all pathways in the US should be able to accommodate it by the Americans with Disabilities Act (ADA) and if they are not, then they should. No excuses; this is almost 2020, for crying out loud.
  • It folds close down and locks; the hand brake is good; the foot brake is the one I usually use myself.
  • Make sure you get the Flex or Pro because the Jogger’s wheel does not turn.

The Duallie is a tool that you will totally think is worth it’s weight in gold when you encounter bolting issues – or flop and drops – with your child with Down syndrome (great post from Confessions of the Chromosally Enhanced linked here). It will last you for years, and years of hard wear and abuse.

It’s a worthy stroller.

(and believe it or not, this was NOT a sponsored post!!)


Buy the BOB Single Pro or BOB Revolution Pro Duallie (Pro is better because the sunshades are longer and the wheel is not locked so it can really go ANYWHERE)

Bob Revolution Duallie onAmazon

REI sells the BOB too (if you are a member, this is a great option because of the co-op membership cash back)

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Sara Weir is the President of the National Down Syndrome Society (NDSS), which is the organization that spearheads and financially benefits from the Buddy Walks ®™ . NDSS claims to be the “leading human rights organization for all individuals with Down syndrome,” and yet in the face of the loss of Medicaid, they have been, for all intents and purposes, silent.

Silent, when the NDSS has promised to be at every table and stand up and fiercely advocate for people with Down syndrome and disabilities.

Sara Weir President of the NDSS

 

Silent, when The NDSS actually have the connections to affect powerful change right here, right now.

A Little Background on Medicaid:

  1. Medicaid is the federal partnership that provides states with money to help pay for healthcare AND programs that help people across the disability spectrum.
  2. A lot of the program funding has something to do with things the Down syndrome community deeply cares about: keeping our kids and their tribe out of institutions. Helping them work. Helping them be productive and integral members of our communities.
  3. If these cuts happen, our kids are likely to be stuck at home, without work supports. Without health care. Without help to reach their goals and dreams.

A Little Background on Sara Weir & NDSS

  1. The NDSS is The National Down Syndrome Society – they raise large amounts of money through their very popular Buddy Walks ®™ across the United States.
  2. That money is supposed to be used to fund the NDSS to help us when we need it.
  3. The NDSS has LOTS of Republican connections – in fact, Sara Weir, the President of NDSS, has a personal membership to the Capitol Hill Club, the exclusive Republican social club, in which she has frequent meetings on behalf of the NDSS.
  4. A strong stance against Medicaid cuts and caps, a strong stance against the new healthcare bill, signed by both Sara Weir and Robert Taishoff (the Chairman of NDSS), leading the public call against these cuts will be powerful.

So far, Sara Weir has not added her own name to any public statement on Medicaid made by the NDSS, nor has Robert Taishoff.

My fellow people with disabilities are placing their bodies literally on the line  against these cuts; parents of people with Down syndrome making videos that are going viral about what these Medicaid cuts are going to do to their families. We have columns and articles being written, we have parents, allies, advocates fighting tooth and nail against these proposed cuts that will be so devastating for people with disabilities in the United States of America.

But we are without direct connections to Mitch McConnell’s office or other power-players that Sara Weir, Rob Taishoff and the NDSS have. And the NDSS are not utilizing those connections or speaking up about it now.

In times of crisis, we look for who is MOST able to help in the fight.

Please. Join me in asking – no, demanding – that Sara Weir and the NDSS step up to take a strong stance against this devastating proposed piece of “healthcare” that will affect us all so drastically.

Join me in demanding that Sara Weir walk her talk about being at the table and “storming” the hill in defense of people with disabilities.

Join me in holding her accountable to do what we are paying her to do: we are paying her to help our kids and community stay safe, healthy and able to participate, through Medicaid and the continued Medicaid funding.

Join me in urging Sara Weir to use her intimate connections with Republicans  to halt this devastating proposed bill.

Her email address is: sweir@ndss.org

UPDATE:

I have posted all correspondence between Sara and myself HERE, along with form letter that she has sent to many blog readers when they write to her about these issues.

NDSS Board Members and emails that I have:

For More:

TrumpCare ToolKit

Information on WHAT TO DO NOW: Medicaid Will Be Gone Forever

One of the more rampant stereotypes about people with Down syndrome is that they are always happy. Don’t ask why that sticks in the face of a screaming child with Down syndrome – even when someone actually sees my child in a rage, they have been known to comment (with a chuckle) about how “those” kids are “always so happy.” Incredulous, I’ve pointed at my daughter, her face turning purple and her tiny mouth pressed hard into a perfect wail of discontent, and the “always happy” commenter just laughs. Like her rage is just a quirky frame for her happiness.

When I saw the title of Kari’s book, “Not Always Happy,” I laughed. I knew right off the bat that I’d like it – even if I was totally judging it by the cover.

It’s a great read. It’s the story of her love for her husband (and their love of Whitman and movies!, and the birth of their family, through the adoption of their son, Thorin. Who has Down syndrome. And who – (drumroll please) is NOT always happy.

What I Liked About "Not Always Happy"

1. It’s entertaining

2. Kari writes in a super-approachable way

3. It’s funny

4. She uses a lot of movie references, and I love movies

5. She tells the no-fun sides of an IEP process in crystal-clear detail

6. It’s informative: I learned a lot about the adoption process through their story

Why You Should Read It

1. It’s a smooth, fun read

2. It stretches you, but not uncomfortably so

3. It will give you a better understanding of what the challenges that the educational system and our culture present with regard to raising a child with Down syndrome

4. It will make you laugh

5. You will also fall in love with their family

Read It!

Kari’s publisher is giving away a copy of this wonderful story to one reader here, anywhere in the world! 

To enter, just leave a comment here, or answer this question: “is your child always happy?!”

Winner picked by random.org in a week.

My daughter, when I woke up on the morning of your birthday, you were awake already.

You had slipped out of your bed and headed straight for the art supplies.

After I kissed your sweet cheeks good morning (and gave you a hug), you said that the drawing was for me – “see?! MOMMY”

Ah! You had written, “mom” on it for me! And my heart melted, my love.

I love how you engage in your art anywhere, everywhere.

The way you open your mouth and try to swallow rainbows, because, RAINBOWS!

I love your curiosity, love of adventure and exploring.

You get your brother dressed and ready to “go on a trip,” leaving the house to travel down to the playground and pond.

You never met a tree you didn’t want to climb.

A forest you didn’t want to walk through.

A valley you didn’t run for

A space you didn’t want to run across

A plane you didn’t want to fly –

Or monkey bars you didn’t want to try and swing from!

I adore you.

I adore you completely, whole-heartedly.

You are the daughter I always wanted, brave and fierce and unafraid.

It comes to you naturally, without thinking. You just GO.

You see the wave and you want to ride it.

And then go back for more!

It’s as if you are on a quest to live as BIG as you possibly can.

Watching you with your brothers makes my heart swell with appreciation, gratitude and love.

You three have a bond

Nothing about your relationship is as they said it would be

“They” being the doctors who told us you were coming with Down syndrome, and “they” being false future-tellers who said you would be “a burden” of a sibling.

You give more than you get with them, teaching them to be bold, fearless, to live with a little moxie.

You teach them to act out dramas

Be adventurous, blow bubbles, dress up (because it’s fun), climb fences, sing with gusto, and – in the case of your older brother, you give him an opportunity to be kind.

I love you

I love your strength and your fearlessness, as also I love your tenderness.

my daughter with Down syndrome

I love your relationship with Daddy too –

If ever a daughter loved her father, it is you.

You know what you like

Be it time alone, drawing, running or CHEERIOS – you seem to have an enviable clarity of purpose and expression at all times.

my daughter with Down syndrome

I love that you play so hard that you literally pass out.

Moxie, my love. My precious daughter.

You came into this world 7 years ago. I was so scared of who you would be, how your extra chromosome would be expressed. I knew so little of Down syndrome, and had no idea that it would mean so much – but that the way that it would mean so much was different than what anyone said.

What it absolutely means to me now, 7 years later, is this: I don’t know how Down syndrome is expressed exactly in you, but it keeps me on my toes, both literally and figuratively.

I have to run to keep up with you.

I need to do my homework to make sure you can do yours.

I need to think about the world in new ways.

I am stretched past my comfort zones.

I am in a constant state of admiration over your beauty, joy, zest for life, and voracious appetite for adventure and fun.

I am so grateful for the gift of being your mother, and for being able to nurture and guide you through this life.

And I can’t wait to learn more about you and explore the world together.

Happy birthday, Moxie!

I love you now and forever.

I was like a snarling mama cat, clamouring for full inclusion until just recently. That is, for NOT having Moxie in a “special ed” classroom, in a classroom set aside in which all of the other children therein also have a cognitive disability.

Moxie learns by imitation, I thought, what sense does it make to put her in a room full of kids that are where she is? 

Right? I mean, since she really is a learn-by-watching kind of person, how is she going to learn to talk when she is around other kids that are mostly nonverbal?

And that might definitely be so. It very well may be. Because, like I said, she really does learn by watching.

But I applied my own deafness to this picture. I thought about how I felt, being the ONLY DEAF KID in every.single.classroom I have ever been in, bar none. The ONLY KID who couldn’t hear, then the ONLY ADULT who struggled through a thousand class sessions, millions of minutes focusing on lips, lips, lips, zonking out over lips, lips, lips in this endless quest to get it right, get it down, hear through watching.

I’m not going to lie: it SUCKED.

I got a taste of how awesome it can be to have a friend who is the same as me when Katherine came to work for my program at UC Berkeley. She and I were, I’m sure, completely obnoxious at work parties when we would “converse” with one another completely by lip-reading, emitting no sounds whatsoever.

It gets lonely when you are the only kid – or adult for that matter – that sticks out in some way.

You feel your difference. Hence, I suppose, the appeal of all-girls schools. Or black colleges.

And now, I think, for special ed classrooms.

***

I think for me it’s more important that Moxie has friends and she feels included, confident and strong than it is that she be all academically stimulated. This is surely a luxury on my part, that feeling, since it stems from my training and background as a teacher. I know I can give her at home what a classroom may lack, academically speaking. Even if it’s the learn-by-watching – she has two brothers, remember?

I want Moxie to know deeply and surely that her extra chromosome is a wonderful thing, bringing with it a bunch of uniqueness that is marvelous!

I want her to embrace who she is, love the gift to the world that her presence brings. I feel that pushing her one way or another – into a room with a lot of other kids with an intellectual disability or into a room with a lot of other kids without an intellectual disability – is not what I want to do. Rather, I want to feel out makes the most sense in a given place. Take each school and classroom on a case-by-case basis.

I want to see what she wants to do.

***

Perhaps that is the sticker; the stone in my wheel. The feeling that a lot of schools would not let Moxie see what she wants to do, or would not value her own opinion. A lot of schools won’t let individuals with a cognitive disability – or their parents for that matter – decide what is best for themselves. Education is not so much about encouraging beautiful minds anymore as much as it is about dollars and scores.

I’m distrustful of any system that wants to segregate anyone. I think the best and most logical conclusion is to integrate everyone. Because really, with all skills present in a class, with all types of individuals, with a full spectrum of intellect and variations in learning styles at play, kids are really going to grow. They’ll be pushed further by helping one another; they’ll see the strengths in those with cognitive disabilities, not just  a societal-defined weakness. They’ll learn that Moxie might not talk as much as they do but she can teach them a thing or three about getting what she wants. Like all people – ALL PEOPLE – she has skills and contributions that she is bringing to the table.

The question is simply if she will be allowed to contribute or will she be a token inclusion in her class?

***

There we go. A flawed system and an imperfect world. What I want does not yet exist and if I choose to send my daughter to school, my choices right here, right now, are a segregated “special needs” classroom or a “mainstream” classroom in which Moxie would need help in the form of aides and such.

I have no answers that are solid but I do know that as much as I loathe segregation, I want my girl to feel accepted and valued. If she found that in a special ed classroom and not in a mainstream one, well, then, I’d think about it.

A special ed classroom is not out of the question anymore.

_______________________________________________________________

  • originally posted June 18, 2013

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The Case FOR Special Ed: when does a contained classroom make sense? If ever?

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Resources for  New Parents of a Child with Down syndrome

Resources for  new parents of a child with Down syndrome are crucial, as I discovered seven years ago while I was expecting my daughter, Moxie.

Having had an amnio, I knew she was coming with Down syndrome. I suppose my background in disability should have made it easier, same goes for my being deaf and having TBI, PTSD… but it didn’t.

I locked myself up everyday in my offices either at work or at home, and spent countless hours scouring the internet in hope of finding information that would point to a life that would not be bad, either for our daughter or for ourselves.

I wanted pictures. I wanted  stories that I could connect with. I wanted groups. I wanted mentors. I wanted friends who understood.

Now you are here, and if you are here because you googled “Down syndrome” or “expecting a child with Down syndrome”, I want you to find what you need.

Here are some links that will hopefully prove to be helpful resources for new parents of a child with Down syndrome.

My free e-book

“4 Years” is a collection of essays from this blog, covering Moxie’s diagnosis, what to say to me (when you hear I have a child with Down syndrome), fear, the choice to suffer, the choice to keep a child, learning to run, speaking, abuse, breastfeeding, “more alike than different”, siblings, learning to have courage and more.

142 pages with lots of photos and artwork by me.

e-book from i-tunes (this is the nicer format but it can only be read using an i-device)

pdf version (can be read anywhere, on any device)

Stories in Book Form:

Expecting the Unexpected: stories from families, broken down by category (free pdf book)

Down syndrome Pregnancy: if parents could say something to themselves when they received the news… (short stories on the website)

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives: 10th Anniversary Edition
(actual book compilations of stories purchased through Amazon or elsewhere)

The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood

Very Useful Sites:

Down syndrome Pregnancy

Down syndrome Diagnosis Network

Baby Center (- the Down syndrome Pregnancy group and Down syndrome group)

Parent Blogs

Down syndrome Blogs – blogs by sub-category

A Day in the Life with Down syndrome – read about a day lived in a life with Down syndrome. A community space, posts from a wide variety of families and individuals.

Online Groups

Please check out this list that I’ve compiled of Facebook Groups related to Down syndrome. If this is overwhelming (and it is!), please try out BabyCenter (- the Down syndrome Pregnancy group and Down syndrome group). It’s anonymous, very supportive, friendly, and you can slowly move into the Facebook world from there.

Real Life

It’s a good idea to get to know kids and adults with Down syndrome, and connect with community (face to face). If you live in the US, check out your local Down syndrome Association – google it if you need to find out where it is. The Down syndrome Diagnosis Network and International Down Syndrome Coalition also have fantastic live groups and gatherings.

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You are not alone. Please contact me if I can help in any way.

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Resources for New Parents of a Child with Down syndrome

The Down Syndrome Chromosome T-Shirt is back!

World Down Syndrome Day is coming up on March 21st –  what better way to celebrate this day than to do so wearing the  Down Syndrome Chromosome Shirt?!

“What is the Down Syndrome Chromosome Shirt?” you might very well be asking. If you are, here’s the answer:

The Down Syndrome Chromosome T-Shirt:

The Down Syndrome Chromosome T-Shirt is simply a t-shirt that has the actual third copy of the 21st chromosome on it. It’s what Down syndrome really is – Trisomy 21.

I’m selling it over on Zazzle

The cool thing about making it on Zazzle is that you can customize your shirt.

Customizing Your Shirt on Zazzle

When you first go to the shirt store, you see a bunch of white t-shirts, a mug and a raglan with black sleeves (like this below):

The Down syndrome Chromosome Shirt

Well, the full page looks like this, and I’ve highlighted the areas that allow you to customize your shirt!The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

So, instead of the white raglan with black sleeves, you could choose a white raglan with red sleeves, or a blue raglan with white sleeves or this:

The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

When you click on the “customize” button, it takes you to this page, where you can add text, change the size of the chromosome design (want it bigger? Smaller? no sweat!). So you could add “Happy World Down Syndrome Day” to it,  “It’s Just a Little Extra” or “Hey! Cheetos!” – it’s your call.

The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

The Kid's Shirts

The kids shirts are simple tees, but also customizable AND with a huge color selection.

Like the adult shirts, it seems like there are only white shirts for sale on the main shop page. The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

But if you click on the shirt, it opens up to the color selection and customization page:

The Down syndrome Chromosome Shirt- available here: https://www.zazzle.com/down_syndrome_stuff/products

Same goes for the baby onesies (so cute!) and everything else. Don’t forget about the mug.

Here’s your link to head over to Zazzle and order yours! Down Syndrome Chromosome T-Shirt 

Or just click below

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