Therapy for Our Child with Down syndrome. 0-24 months

I’ve never been much of a Systemic Follower, most often preferring the tune of my own drum. But whatever inclination I had in me to listen to what The System Said about my daughter pretty much dissolved after The Placenta Incident and my breastfeeding issues. I learned right then that listening to my own gut was more important than checking off a list of what some other people with titles behind their name were saying I “should” or “shouldn’t” do.

“They” said, THERAPY! “They” called for it, talked about it, paraded it all around like a fluffy white dog in a show. Skeptical about what “early intervention” could do for a 4-month old – I mean, come on! A baby! Lying there and gooing about!, but still susceptible to that thing called “special needs parenting guilt”(which is, wondering if at a later point, I’d wonder if I could have/should have done more? Made a real difference with my child? Was it me that stunted her growth?) I signed us up for a few samplings the Regional Center offered. We had a home-lady (“development specialist”) come around and ask me a lot of questions then tell me that everything I was doing was fabulous. I like being told I’m fabulous and she was very nice, but it didn’t seem (in any way, shape or form) more productive than what I was doing on my own, so after a while, we quit.

What was I doing at home, you wonder? Oh, I just set up the playmat and different play areas for Moxie with various shapes, sounds, textures and introduced her to everything. Tried to get her to roll over, look up, listen and so forth, Nothing very out of the ordinary. Regular “play with your baby” kinds of things.

the “fabulous”, “highly engaging activities”….
We started Physical Therapy first at Kaiser with the most marvelous Physical Therapist, a lovely woman by the name of Sharon White. If you are in the Bay Area, look her up. I love Sharon and think of her as the Michael Jordan of Physical Therapy – there is something just *different* about the way she moves her hands, manipulates limbs and does her job that is the hallmark of someone who really knows her stuff. Who is truly talented. I loved PT with her right off the bat – she was clearly doing things with Moxie that I knew nothing of, and I learned a lot from watching her and from following her advice.
Moxie working with Sharon

Kaiser eventually denied us services (this is common, by the way, Kaiser will deny services and then you petition for more and basically just go with the Regional Center services from there on out) and the Regional Center picked us up and we had a PT come to our home every week. We liked her very much – she was not Sharon, no, but she was also very talented, caring and supportive. When I told her that I felt isolated (this time last year?) she referred me to the Oakland Children’s Hospital Parent Infant Program (“PIP”), and after a few months, we started there, going just once a week even though it’s a twice/week program.

In the meantime, Kaiser suddenly contacted me and said that they would accept Moxie after all. This was a big shock for everyone – Kaiser evidently never does that. Kaiser was going to take us back and then wanted to refer us out to Easter Seals (that is, they were going to pay Easter Seals to provide PT services in their stead). I adamantly refused – if we were going back to Kaiser, I wanted to go back to Sharon! No way did I want to start up with the Easter Seals – or anyone else – if I could have Sharon again!

So we went back to Sharon. And Moxie had her 1st birthday.

I’m terribly bad at tracking what my child can or cannot “do” by way of milestones and age, but by her first birthday, Moxie was on the verge of crawling. She would get on all fours, rocking back and forth, basically trying to push herself forward by rocking (it was hilarious!). She had a lot of teeth, not all. She was feeding herself. She wasn’t saying much beyond a couple of words. She liked to eat paper, transfer objects, play and of course, she adored music (I had her career as a dancer with AXIS all set).

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After Moxie turned one, we started with PIP in addition to seeing Sharon (our outstanding PT) once a week.

I had mixed feelings about PIP from the get-go. On one hand, the staff is committed, enthusiastic and oh, they’ve been doing this longer than I’ve been alive. I liked many of the other families – the kids in the program represented the full disability spectrum, with only Moxie and another child having Down syndrome. I liked the diversity of disability present. I liked most of the other parents and appreciated learning what it is like for many parents at the beginning of their “disability career”. Parents of kids on the Autism Spectrum, kids with William’s, kids with Cerebral Palsy, with unknown and undiagnosed disabilities. It’s rougher in many ways for them than it is for me: they haven’t been a part of an active and thriving disability culture and community; they don’t know with the certainty that I do that their kids will be just fine.

There was a high turnover rate in this program and with each turnover, I wondered how good it really was for Moxie, whom I was learning is a strong imitator, to be around kids that were by-and-large just as nonverbal as she? That weren’t really signing either? Around kids that often weren’t more developed than she was either in the gross motor area. I wondered how good it was for me to go as I often came home profoundly depressed by the sadness of the other parents.

The program, you see, is divided into 4 parts: 1) small circle time 2) structured activity 3) snack time 4) parent therapy time (with the kids engaging in supervised free play in another room). During the parent therapy time, I’d hear of all the problems others faced, listen to their grief, their anxiety and more.

Still on the fence, we went to Mexico to camp for a month. While in Mexico, Moxie played hard, moved hard in the water, on the beach, in the sand and just glowed in the light from the attention she was receiving from all of us.

Her leg and ankle muscles, given to pronation, strengthened considerably.
Which was understandable, given how much she was exercising them daily.
Mexico was where Moxie really started to cruise.
 

When we returned,Sharon said that Mexico did more for Moxie’s development than therapy could have. I was watching how Moxie re-entered PIP, with all of its bountiful structure (structured play! structured song! structured games!) and well.. wasn’t too impressed. It’s just not playing on the beach in Mexico, let’s say. On the flip side, I had come to thoroughly enjoy the parent’s therapy piece! In fact, it had become the main reason why I wanted to continue to attend. Therapy for me, woo-hoo!

But while I delighted in the parent therapy, the point of going there twice a week for 3+ hours a time was Moxie, and while she liked the people and loved the attention she was receiving from the staff, she wasn’t learning new things like she did while simply engaging in unstructured play, especially with Micah. It made more sense to me to devote the time we were spending in the program simply to Moxie – to paint and play with her. Work one-on-one on signing. Let her create and be expressive and do and be.

This all on the heels of my being wretchedly, pregnantly sick, and also trying to raise the money and learn to run for Team in Training. It just wasn’t good timing. I couldn’t do everything and quitting the PIP Program seemed the smartest thing to do.

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Moxie just turned two years old. She goes to PT twice a month, still with the marvelous Sharon. She will be starting Speech Therapy very soon and that will be once a week. Other than that, nothing.

And it feels right. It’s the right thing for us.

In terms of what she’s “doing” – (sigh – I’m always bad at recalling and noting these pieces) she’s walking, yes.


She signs probably around 30 signs. Says 5 words or so. Eats with spoon and fork and throws a fit like you wouldn’t believe if you try and help her. SHE CAN FEED HERSELF, thank you very much. 

birthday cake
She likes to try most anything she sees us eating. We are pretty healthy eaters (I like writing that right after I show you a photo with her eating cake) and so she has a strong propensity for foods that are good for her.
tomato and edamame: favorite snacks
 She loves climbing and can go to the top of any bookcase. I don’t have many photos of this as I always freak out and run to get her rather than reach for the camera. You’ll have to take my word on it: this girl is a climber.

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I feel that therapy with children with Down syndrome is the same as tuning a digital hearing aid: one size does NOT fit all. Some personality types might benefit from more therapy than others. Not all children need it and not all need a whole lot.

Moxie imitates, she learns from watching. When she saw her friend Zia – a year younger but about the same size as her – walking, I saw her lips tighten and her eyes narrow in a set look of determination. I could almost see her thinking, by God, if he can do that, I can too. Sure enough, she was walking without support shortly after.

Moxie will see someone her age signing; she signs. She sees someone eating with a fork; she tries it. It makes no sense to me, given her personality type, to engage her (solely) in activities with kids that are on the same skill-level as she is. Also, her try-and-see approach coupled with her eagerness to explore and active energy do not mesh well with a repetitive, very structured environment or activities. She gets bored and starts tuning off – I know this, because I saw it happen with PIP.

It is my belief that kids with Down syndrome are the same as any other child – you simply have to get to know your child to understand what will most benefit him/her. Not everyone learns the same way and everyone has different strengths.

The other thing that I feel – more from my gut than from a Vulcan-like logical mind-space – is that milestones and things like that are not terribly useful. I mean, what purpose do they serve? To “get” our kids to reach mainstream goals that our kids will actually only reach when they are truly ready to anyway? Most 16 month old kids can walk; my daughter couldn’t at that age. Did I really need to know that against a standard litmus, she failed? No. What was actually useful was just being aware that her ankles were pronated and then taking her to the beach and playing with her.

My advice to parents just starting out is to get to know your child. Spend time really watching your child, figuring out what their learning style is. 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 – I think in their lack of care, 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.

What are your thoughts on therapy? What do you do for your child?

Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


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4 Comments

  • Hi Meriah,

    My son Rohan and I were in PIP with you. Do you remember us? He was the half-Korean boy with autism and I was the large red-headed guy that was having a rough time with his diagnosis.

    I came across your blog today when a disability rights activist/friend posted it on Facebook. What a small world! Anyways, I really appreciated you and Moxie being in the program. I was in a dark place at the time and your enthusiasm, peace, and delight in your daughter (and her amazing personality too) helped crack open the cave around me.

    Best,

    Mark Strecker
    Rohan’s dad

      • Yeah, we’re doing great. Our little girl was born about 6 months after meeting you. She was also diagnosed with autism. We moved to southern California to be closer to family and somewhere along the way learned that autism is nothing to be scared of. Our kids are magical and wonderful and thriving. Most importantly, they are happy. I volunteer heavily in the special needs community, and am beginning to dabble at disability advocacy. Friend me on Facebook if you’d like to keep in touch!

I'm opinionated, friendly & chatty... I hope you are, too