How to Tell if Your Child With Down Syndrome Needs Therapy

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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: 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. 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. 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. 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.

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 a group assistant and receives occupational therapy once a month at school and speech therapy twice a week.

She just started Special Olympics. 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. She enjoys a close and loving relationship with both of her brothers.

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.

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