Is it too late for early intervention services for a 6-year-old with Down syndrome?

Today was a darn good day.

With one exception (a big one, she left the playground at recess) Sophie did well in kindergarten. Annabelle continued on her merry second grade way. We had gelato with Ms. X to celebrate Sophie’s Week One successes, and dinner after that (yes, we had dessert first, shoot me!) with Papa.

Papa’s my dad; my mom is in Denver with my sister and her family, so the girls and I kept him company — and I have to say, the dinner table was a much more enjoyable place tonight than it was last night. (The topic of my previous post.) The highlight was when Annabelle told him the “smell mop” knock knock joke — and he fell for it. Really, if you’ve never heard my father say “Smell my poop” — loudly and in public — you haven’t lived.

I was loving life for a number of reasons, today. I just finished back to back cover stories at work. That’s the petty reason. I’m considering how short life is, vis a vis my grandfather’s slow, (hopefully not) painful, sad demise. That’s the more heady reason.

Then there’s a reason I can’t really label, but I can tell you it’s caused me to throw my pity party aside, momentarily at least.

I didn’t spend (much) time today, dwelling on Sophie’s snarly hair or Annabelle’s lack of piano practicing or even worrying about the whole DS/kindergarten thing: Should I insist Sophie wear a name tag every day? (Maybe those safetytats weren’t such a bad idea.) Should I fight for an aide in the classroom, or at least on the playground? Should we quit music therapy because it’s too much on top of Sophie’s busy schedule? Should we start swimming lessons?

In the grand scheme of things, really, that’s fine tuning. Sophie’s set in so many ways. I didn’t realize that til I met another mom today. She has a 6-year-old son with Down syndrome, and for the past four years, he’s had no services at all.

None. No physical therapy, speech therapy, occupational therapy, music therapy. No early intervention pre-school. No adaptive PE or special ed resources or respite or habilitation or government-paid health insurance. Nothing.

Here let me say that that’s all I’ll say about this mom and her kid, in the way of identifiers, because I don’t want to invade their privacy. But I have to tell you about them. Since 2004, this mom and boy and their family have lived in Arizona. And in that time, he’s gotten nothing — not through the schools, not through the state’s Department of Economic Services. The mom told me she tried, when they moved here. She called and got a caseworker who never called her back.

I held back the tears til she’d walked away, and while it’s not really my style, I wanted to run after her and give her a hug. For all my eschewing of support groups and instruction manuals and the first season of “Life Goes On,” I’ve still insisted on services for Sophie, services I contend have gotten her where she is today. (The “system” agrees. Well, why wouldn’t they? But they do deserve a whole lot of credit.)

No one makes these services easy to find, believe me. Somehow, when Sophie was born, Ray made his way to a government office and got her signed up. Every new step has been a battle. I don’t blame anyone who can’t find their way — or loses it.

I think the only thing that motivates me to keep trying to get help is the fear of being alone, and ill-equipped to help Sophie without a team of professionals.

I got in the car and picked up the phone, made some calls and sent some emails and will get that mom some contact information. Her son is not potty trained, she told me. He does not speak. He doesn’t know any sign language. One of the parents is always home with him.

I tried to explain to her what’s out there, in the way of help, but she looked at me like she didn’t quite believe what I was saying.

I want to meet the little boy, and yet selfishly, I’m terrified. I know you can’t compare kids with Down syndrome and that that’s not what this about, not at all. And yet of course, if I’m going to be honest, I will tell you that yeah, it is, a little.

There’s no telling what this boy would have been like with early intervention services or what Sophie would be like without them. Early intervention is not a cure-all. But it’s all I’ve got, and I can’t imagine not having had it, the last five years.

I can’t help it. I need to see what might have been.

And more important, I need to help this family, the way my family has been helped, if only to in some small way pay it forward. Or at least try.

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5 Comments

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5 responses to “Is it too late for early intervention services for a 6-year-old with Down syndrome?

  1. That’s unbelievable! I’m grateful that I live in a state and county that has a wonderful Early Intervention program and that my daughter is able to attend a wonderful preschool program. But sometimes you really have to look. Our pediatrician said NOTHING about EI when he gave us our daughter’s diagnosis. If I wasn’t such an internet junkie I would have never known about all the services available. It makes me sad to know that those without the resources and stamina to find these services don’t get them. And often those are the kids who need it most.

  2. Do you know the 80/20 rule? For example, 80% of the work done by, say, the Lion’s Club is done by 20% of the membership, ad. inf. Likewise, 80% of pediatricians are mediocre.

    I do not mean to be callous, but I fear this little boy’s mom an 80 percenter.

  3. Reprise:

    Amy, your patience with that mother is noble; I should learn from your example.

    On that positive note, intervention therapy would likely never be too late. It might go by another name; before they commonly called it “early intervention”, my son saw an occupational and physical therapists.

    My son’s best intervention has been his brothers, who have never been fooled by the difference between mentally retardation and plain old lazy or stubborn, etc.

    My son wore a nighttime diaper until he was about six. Once upon a time when visiting long distance grandmother, he asked to sleep with a cousin. Grandmother told him if he’d stay dry all night, she would allow. He’s been dry every night since. (I guess his parents would have allowed the diaper indefinitely, else it was a lesser issue than to Grandmother.)

    My point is that there are multiple channels for our “special” ones to receive intentional social and neurologic stimulation. At a minimum, these folks might have enrolled their son in, say, a free sunday school or inexpensive occasional mother’s-day-out . To stay at home full time is stimulus deprivation. Watch this boy blossom now that he’s out of the closet.

  4. Unfortunately, sometimes we have to deal with the pain of seeing kids whose parents are not really making an effort. (These parents maybe did, but I suspect not.) We have a lady in our city who begs for money, and in the afternoon her daughter joins her. (The daughter is about 14 and has Down syndrome) I understand that the child misses a fair amount of school (she used to not go at all, until the city intervened). The mother is not an educated person… she loves her daughter, but has NO idea of what her child could do. (The girl doesn’t speak.) I’ve tried speaking to her, but she just isn’t interested. Very sad and very painful.

  5. Rachel Cohen

    “One of the parents is always home with him.”

    So he knows he’s loved. Quit judging.

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