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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 has affiliate links. That means that if you sign up using my code, I’ll make a percentage. I want you to know though that there is no way I’d be writing this post unless I myself used this and I honestly thought it had benefit to others. This isn’t some scamming post. Read my disclaimer for more!

This post is about Ibotta, a rebate-based app and site. I’m writing about this with those of us with disabilities specifically in mind, as we often live off a fixed income with few opportunities to make a little extra money. Ibotta is a perfect way to do that, because the money back isn’t going to tip the scale and kick anyone off SSI/SSDI, but it’s enough to give us enough to enjoy some extras. Also, Ibotta pays us in gift cards or PayPal, so it’s a little under the radar.

What is Ibotta?

Ibotta is a free app that will helps you get cash back for things that you buy. When I heard about it, I was stuck in a hamster wheel of ‘how on earth can this BE?’, wondering what the catch was, because this couldn’t be without one, right? Well, actually, no. There is no catch. Here’s how the app works in a nutshell:

  1. Download the Ibotta app for free. Click HERE to do that (on your computer or your phone; both okay)
  2. Open the app and look around at the available rebates. Unlock any rebates (by tapping the “plus” sign) for things you were going to buy anyway. You may need to complete some easy tasks (more on that below)
  3. Physically go to the store and shop like you normally would.
  4. Come back home, re-open the Ibotta app,  and upload the receipts from the purchases that you just made.
  5. Get money back.

THAT. IS. IT.

It’s like couponing on steroids. Plus, when you join, you  get a bonus $10 for FREE!

steps to use ibotta

Is Ibotta Too Good to be True?

It’s weird writing a post like this because I have never been into couponing (too much work, I’m not organized enough) but I have lived off SSDI (a fixed income) and I have had to make food and items last. I realized that a lot of us who have disabilities or who have kids with disabilities are used to thinking outside the box and used to making a dollar stretch, mostly because we have to.

This whole Ibotta thing made me feel like I have been sitting in a cave or something, because how could I not know this? I mean, how could I not know of a way to make money that’s so easy it’s almost insulting?

But whatever. I know it now, so I’m passing it along.

Ibotta Stores:

All. The. Stores. Are with Ibotta. I’m not kidding. I usually do a lot of shopping at Target and Walmart (both) and they are right there. What I did not expect were retailers like Groupon, E-Bay, iTunes, Amazon, Gamestop, Etsy (Etsy?!!!), Apple (even Apple refurbished stuff), LaneBryant, Gap, even pharmacies, airlines and hotels.

It’s a good idea before doing any kind of shopping to just whip out the app and check. Even if you are going to reserve a hotel room in Greenland for your upcoming trip (lucky you!); check. I wouldn’t be surprised if they had a deal.

Screenshot of Some Deals When I Opened Ibotta to Write This Post:
Save money with Ibotta

Do You Get Paid Real Cash with Ibotta?

Yes, you get paid real cash with Ibotta.

Here’s how it works:

Every time you upload a receipt and claim your rebate, the money goes into an Ibotta account. When that account hits $20, you can cash out. You only have 3 options with cashing out: gift cards, Venmo or PayPal.

For me, it works out well to cash out with gift cards (because they have everything: it’s easy to just say, okay, the money that I save using Ibotta will be the money that we play with; no save, no play. I can then cash out with Fandango for movies with my kids. It’s pretty great. If (or when) I make a lot of money with Ibotta, I’ll cash out through PayPal, but until then, the movies work out well.

What About the Tasks?

Sometimes in order to unlock a rebate deal with Ibotta, you need to complete a task, like watch a short video or take a quiz or something. The quizzes are easy; the videos I just play but don’t watch (I hope I don’t get in trouble for this). The tasks are probably “the catch” – and how Ibotta pays for the rebates, some sort of advertising/marketing ploy. But it’s easy enough to do it and doesn’t cramp me up , so that’s a win.

ibotta

Mobile Purchases with Ibotta

When you shop with an online retailer with Ibotta, go through the Ibotta app:

  • Open the Ibotta app
  • Select your deals, complete the tasks (if any)
  • Click on “shop” for the retailer from within the Ibotta app

And that’s it. You will get your money back through Ibotta directly with in-app purchases.

Ibotta and Teams

We can even form teams and help each other save, because we help each other earn additional rebates! If everyone on the team redeems rebates, we get more of them. Since I’m already earning, you benefit. Join my Ibotta team HERE.

Uploading Receipts

To verify your receipt and redeem your rebate, you just open the Ibotta app and take a picture of the barcode for the item and then either scan the QR code of the receipt or take a picture of the receipt.

It’s a little bit of a pain in the butt, but for me, it’s worth it because I really, really like stretching my money and allowing it to pay for fun stuff with my kids (which I couldn’t afford if I didn’t do this).

Anyway, so after I upload the receipts, the rebate money is placed into my account within 48 hours (I usually mark my calendar for when to check).

Linking Store Loyalty Cards with Ibotta

You can link your store loyalty cards with Ibotta. You browse the app, add the items you are interested in, complete the tasks if you need to, then when you check out at the store, scan your store loyalty card – Ibotta will automatically give you credit for it (so, no need to scan the receipt later). I always check later though.

In Summary

Ibotta is an easy way to regain some of the money you spend.

The great thing about it is that, as I’ve mentioned, you get it back in ways that are under the radar and even if it was above the radar, it’s only enough money to allow you some splurges; it’s not enough to kick you off of SSI/SSDI (if you have that) and it works well to give people on a fixed income some extra money.

Down syndrome Book Resources: 20 Indispensable Books for Parents in the Ds Community: a list of books that are fantastic. Missing any? Add your suggestions in the comments!

Disclosure: There are some affiliate links below, but these are all highly recommended books, all of which have been personally verified and/or personally read. 


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, Development Disability and sometimes Special Needs*(see note below).

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

I myself purchased or reviewed all of the books listed below.

The ones that I most highly recommend I have put an * before.

Your local library should offer most of these books, and/or your local Down syndrome Association – if they don’t, request that they purchase them!

Most are also easily available through Kindle (on Amazon) or Nook (Barnes and Noble). The medical/education books may be available through your child’s school or you can request them to purchase it as a part of your child’s IEP.

Down syndrome Book Resources

Practical/Skills/Training/Medically Oriented

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 

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

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

Education

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

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

 

Collections

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

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

 

Memoirs/Personal Stories

* 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

 

Fiction:

The Unfinished Child

 

Read Book Reviews:T21 Writers Alliance

____________________

* Note: “Special needs” and “disability” are commonly used interchangeably. This is incorrect.

A “special need” is an outdated educational term referring to an individual’s unique educational need, as defined through an IEP. A “disability” is a way of seeing, hearing, speaking, thinking, behaving, moving, feeling that is less common than most.

The words are NOT interchangeable, and the word “disability” is not a bad word. Please use it to refer to your child’s Down syndrome. For more information on disability vs “special needs”,  please read this post.

 

 

 

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad.

***

Local Resources:

Never underestimate the power of local. We ourselves received Moxie’s ipad from a local organization that my friend Mari told us about, the  The Shelby Clark Memorial Fund.

They were absolutely wonderful.

I contacted them off of their website, applied for a grant in honor of Shelby Clark, a beautiful little girl that passed away too soon.

We are deeply grateful to the Clarks for giving Moxie her ipad and try to honor the memory of their child.

Other Local Resources:

Rotary/Kiwani/Lions Club: your local business club is likely to have an outstanding commitment to championing education –  it might be a simple matter of asking if that commitment also covers ipads, which are used to help develop communication and cognition. If they don’t, encourage them to start one – with your child being the first recipient!

Cross Disability Organizations:  United Cerebral Palsy, Easter Seals, etc. They might have a fund to tap into, or they might know of one.

Lending Libraries:  Here in the Bay Area,  the Center for Accessible Technology’s ipad project for people with speech disabilities, lends out ipads for specified periods of time. Check out your local libraries/non profits to see if similar projects are happening that you can tap into.

Non Profits: Speaking of non profits, check in with your  local Center for Independent Living about options. I know the CIL in Berkeley has a lot of resources and knowledge – make sure to talk to the person who works more with funding/grants/technology.

Word Out: Family and friends are traditionally the source for most of our information and contacts. Spread the word that you are looking and that your child would really benefit from an ipad. Ask your people to keep their eyes peeled and ears open.

photo 3

Organizations:

I was going to do a write up on A4CWSN -Apps for Children With Special Needs – include information on their apps, an interview with Gary James, the founder, and of course, information on how to enter to win a free iPad.

It seems, however, that there is a situation with A4CWSN . They are being investigated by the Attorney General of the state of Connecticut. That sucks in and of itself, but the part that really stinks is the founder deletes questions on his facebook page and attacks people that question him or what is going on.

So saying this, there are still people that have received ipads from the organization. I guess this is one of those potential sinkholes that you can navigate at your own risk. All links and information follow – you make your own call.

General website: Apps for Children with Special Needs

About the investigation: Contact information for the man in charge of the AG investigation. Terence Zehnder, Special Investigator, Trade Practices Division, Department of Consumer Protection: terence.zehnder@ct.gov

ph.(860) 713-6130 fax (860) 706-1315

Sites related to the investigation:
http://a4anon.blogspot.com/
http://a4cwsnsurvivor.blogspot.com/

photo 4

Moving On:

I just want to encourage other folks out there that might really want to get an ipad for their child (with or without a disability). Even if you have a low income, it shouldn’t stop you. Spend time googling local resources, organizations. Even unexpected ones, like those mentioned above.

Tell people you are looking, keep all doors open. It’s definitely possible.

There are also a million and two fundraising ideas floating around pinterest – you can even have bake sales to raise the money, a tip jar at work and so forth. It all counts and it all adds up. But that’s probably the subject of another post.

If you know of other resources, please leave them in the comments here so that everyone can read and learn.

photo 2Most of all, I think it’s important to keep a very positive outlook: BELIEVE it can happen, really believe that your child will receive what s/he needs to learn and that it’s simply a matter of finding the organization that is the best fit for your child, knock on doors and let them open.

Good luck.

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad.

***

Local Resources:

Never underestimate the power of local. We ourselves received Moxie’s ipad from a local organization that my friend Mari told us about, the  The Shelby Clark Memorial Fund.

They were absolutely wonderful.

I contacted them off of their website, applied for a grant in honor of Shelby Clark, a beautiful little girl that passed away too soon.

We are deeply grateful to the Clarks for giving Moxie her ipad and try to honor the memory of their child.

Other Local Resources:

Rotary/Kiwani/Lions Club: your local business club is likely to have an outstanding commitment to championing education –  it might be a simple matter of asking if that commitment also covers ipads, which are used to help develop communication and cognition. If they don’t, encourage them to start one – with your child being the first recipient!

Cross Disability Organizations:  United Cerebral Palsy, Easter Seals, etc. They might have a fund to tap into, or they might know of one.

Lending Libraries:  Here in the Bay Area,  the Center for Accessible Technology’s ipad project for people with speech disabilities, lends out ipads for specified periods of time. Check out your local libraries/non profits to see if similar projects are happening that you can tap into.

Non Profits: Speaking of non profits, check in with your  local Center for Independent Living about options. I know the CIL in Berkeley has a lot of resources and knowledge – make sure to talk to the person who works more with funding/grants/technology.

Word Out: Family and friends are traditionally the source for most of our information and contacts. Spread the word that you are looking and that your child would really benefit from an ipad. Ask your people to keep their eyes peeled and ears open.

photo 3

Organizations:

I was going to do a write up on A4CWSN -Apps for Children With Special Needs – include information on their apps, an interview with Gary James, the founder, and of course, information on how to enter to win a free iPad.

It seems, however, that there is a situation with A4CWSN . They are being investigated by the Attorney General of the state of Connecticut. That sucks in and of itself, but the part that really stinks is the founder deletes questions on his facebook page and attacks people that question him or what is going on.

So saying this, there are still people that have received ipads from the organization. I guess this is one of those potential sinkholes that you can navigate at your own risk. All links and information follow – you make your own call.

General website: Apps for Children with Special Needs

About the investigation: Contact information for the man in charge of the AG investigation. Terence Zehnder, Special Investigator, Trade Practices Division, Department of Consumer Protection: terence.zehnder@ct.gov

ph.(860) 713-6130 fax (860) 706-1315

Sites related to the investigation:
http://a4anon.blogspot.com/
http://a4cwsnsurvivor.blogspot.com/

photo 4

Moving On:

I just want to encourage other folks out there that might really want to get an ipad for their child (with or without a disability). Even if you have a low income, it shouldn’t stop you. Spend time googling local resources, organizations. Even unexpected ones, like those mentioned above.

Tell people you are looking, keep all doors open. It’s definitely possible.

There are also a million and two fundraising ideas floating around pinterest – you can even have bake sales to raise the money, a tip jar at work and so forth. It all counts and it all adds up. But that’s probably the subject of another post.

If you know of other resources, please leave them in the comments here so that everyone can read and learn.

photo 2Most of all, I think it’s important to keep a very positive outlook: BELIEVE it can happen, really believe that your child will receive what s/he needs to learn and that it’s simply a matter of finding the organization that is the best fit for your child, knock on doors and let them open.

Good luck.

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