Tuesday, February 15, 2011

Experts for children with special needs: that would be us

Like me, I'm sure you have your own team of experts for children with special needs. Like me, I'm sure at this point you could qualify as an expert.

This is on my mind because today I read a fascinating New Yorker article, The Hot Spotters, that mentioned an inspiring doctor, Jeffrey Brenner, who works in an impoverished city in New Jersey. After he started reaching out to locals with the heaviest medical needs and giving them more personalized attention, he cut their hospital visits by 40 percent and their medical expenditures in half. I loved this quote:

"My philosophy about primary care is that the only person who has changed anyone's life is their mother. The reason is that she cares about them, and she says the same simple thing over and over and over."

It's so very true, especially when you're raising a kid with special needs—although obviously, there are plenty of caring dads out there, too. And to be sure, we have a veritable team of experts: assorted therapists, teachers, a pediatric neurologist, a developmental pediatrician, a physiatrist. But ultimately, Max's care boils down to me and Dave. Some days, the responsibility feels too great and I wish there were an actual expert overseeing Team Max. I want to make sure we're doing whatever possible to make Max's life better, easier, and more enjoyable. I want to make sure we're enabling him to get past his physical challenges and make his way in this world.

The other week, I realized we needed an adaptive handle for our phone so Max could better pick it up. Duh. The occupational therapist who sees Max at home hadn't thought to recommend it, and it had never before occurred to me, either. Max doesn't ask to make calls—but maybe he would if there were a phone he could more easily grab. The OT got the above handle and attached it the other day. So far, Max hasn't been dialing up girls, ordering things from infomercials, or prank calling, though I can just imagine that conversation:

Stranger: "Who is this?"
Max: "Ur-ul AX!" ["Purple MAX!"]
Stranger: "Huh? Who is this?"
Max: "Ur-ul AX!"
Stranger: "You have the wrong number!"
Max: "Ur-ul AX!"

I'm glad the phone handle occurred to me. I wonder what other stuff we're not thinking about that could help Max. But there's just me and Dave and Team Max, doing the best we can.


  1. This reminds me of a recent IEP when all the specialists went around and introduced themselves and their specialty.

    To which I responded:
    Hi. I'm Frume Sarah and I'm the Beernut expert.

  2. I've always believed that end users should be the experts, after all they are of course the ones living with the many problems and quirks disability brings.

  3. You never know what you're going to need until you need it.

  4. Oh, and I absolutely believe that parents are the real experts. (or the person living with the disability) As therapists, we just pass on to parents what has worked for another person, (and do a little therapy too).

  5. I love that picture and am thinking you need an adaptive handle for the wine bottles. Never know... when you could use a glass and Max could bring it to you. tee hee hee :) :)

  6. Now Max can order a pizza!

    I often tell PTAs what they're doing wrong. They look at me like I'm nuts until I point out I started PT years before they were even born. Then they get it.

  7. OMG soooo true
    I love the header
    Would you believe i have never come to your blog before this
    I am loving it
    My son has ASD not CP - but you and I have the EXACT same views

  8. I love Eddie's doctors, because they acknowledge that I am an expert on my son. At his most recent round of appointments, his pediatrician said that he trusted what I felt needed to be done, because I was doing it all right, and his neuro said that they trusted that we could do therapies at home without going weekly if we couldn't afford it. It's so great to be part of a team for my kid where all of us respect each other.

  9. How is he going to use the phone? He can't talk, so do you plan on getting one of those phones like the deaf use later on? Just curious...

  10. Good points!

    We are our child's best (and sometimes only) advocate. But more than that, more than a team player. We're the expert. We're expected to be the expert. And I do NOT let anyone tell me any differently. No one knows them like I do. Not to be snarky, but it's true.

  11. Wow, that's a swell little handle and works so good on a portable phone (those things are hard for anyone to handle, they're so slick and smooth!).

    Caitrin needs to keep up with the group--Max does talk, and plenty of people understand him. What, he's "not allowed" to talk to mom on the phone when she's away on a business trip because his articulation isn't clear enough to suit you?

    Sheesh--she may not have meant it, but she came across as TONE DEAF.

    I think Max being able to use the phone might encourage him to talk more.

  12. So true! We as parents of special needs children are the experts. If only doctors, teachers and even other parents (of non-special needs kids) would see it the same. It requires us to be brave, outspoken and continuously advocate for our children. Great post! Hope you check out http://www.alittlebloomer.com which is the Good, bad and funny of a Girl with Asperer's.


  13. As a parent you do really become an expert in the field when you have a child diagnosed with virtually anything.

  14. Agree totally. we had early problems with different clusters of hospitals (trusts here in the UK) who were not talking to each other. So we started the liaison which now works well enough.
    We are the Ashley Experts and try hard to understand the jargon thrown at us.
    Caitrin, with respect, it's not what our special kids "can't" do but what they "could" and "will" do. I can see Max using a phone to natter to Mum and his CP shouldn't get in the way.
    Ellen. have you considered skype video calls to chat to the little man when you're away? Just a thought.

  15. If holding a receiver is difficult, have you thought about using a speaker phone? You can get relatively cheap big button phones that have a speaker. Is Max able to match numbers? It might be good OT to practice hitting the buttons as you call out a number, especially since you said that he's starting to be able to isolate a pointing finger. You can google "big button phone" and find lots of choices.

  16. He actually loves to hold receivers (we have an old-fashioned rotary phone that doesn't work but he's always picking it up and pretending to talk). But, yes, a push-button phone is in his future.

    Caitrin, maybe you're new here and don't know Max but he does have speech (see the video I just put up). And he tries very hard to talk, like Felicia said, I think this could encourage him.

    Dave, we tried Skype the last time I went away! It's great.

  17. Just found your blog - great great blog! And yes, parents are often the experts. I'm part of a parenting team of a fabulous 6yr-old with Cerebral Palsy. My boyfriend, his ex-wife, and I generally show up to all parenting events and I'm used to the confused looks now as to 'who are you'? His mom introduces me as a 'co-parent' which is incredibly helpful and sets the tone. We listen to the doctors and therapists but we also use our own judgment too. We got him a bike last year; Mom was skeptical, no therapist recommended it, but it's proved itself as the best piece of equipment we could ever buy. His excitement about it got me to start a family biking blog. Now, Mom handles the American Idol-style singing and dancing (like your Max) and my job is to keep the biking going.

  18. have you ever tried having a picture book where Max can show you what he wants in the picture?? Or show people pictures of his friends, pets, favourite stuff, etc. (Or maybe you can load them onto his IPAD and he can bring them up for people). Does he like to play games on the computer?? If he does, maybe some non timed games. I use a hand splint to keep my arm straight. Maybe he could touch the screen better if he had sometime to touch it with like a special marker or a wand or something. Luckily I live in Canada so most thing are free. But if you're interested in non timed, disability friendly computer games, Post me back here and I'll get back to you...

  19. Once when my girls were infants, just home from the NICU, I had a doctor ask me if I worked in the medical field....No, I'm just a Mom who needs to know everything there is to know so that I can be an informed parent about my kiddos.

  20. Ms. Ding: Awesome on the bike! It's the most amazing therapy. You sound like an excellent "co-parent." :)

    Janine: Alway up for hearing about disability-friendly computer games, bring 'em on.

    Sarah: The same exact thing happened to me. I was visiting a physical therapist for the first time when Max was about three months or so, and I was explaining about his brain damage—occipital, parietal, basal ganglia not affected, blah, blah. She asked if I was in the medical field. Like you, I just absorbed as much as possible as I could about what had happened. Just don't ask me what day it is, cause I probably won't know.

  21. Google: online spelling games and if you go to a quick game play you can play for free. And, you can make your own word list. I also play lots of facebook games. Happy Pets (which Max might like). Farm Ville. FrontierVille and Happy Aquarium. Baking Life.
    Facebook is good because lots of games aren't timed and you can search for good ones.
    WordQ is a program that predicts what you are going to type before you type it so you just have to select the number and it copies the whole word. Like if Max wants to type "Purple Max". He could type "Pu" and it might give you 1. Purple, 2. Put and he would pick 1 for purple and it would type that. You can download a trial version for free. (Point and Click) is a way you can use the mouse without dragging or moving it physically. You can use mouse keys which is when you change the mouse to arrow keys and then you click the box you want for each motion, click and drag, right click, left, etc. you can do any motion. It is also free from Polital enterprises online (it's in google). There is also Click Aid which is the same but a bit different.

    Have fun:)


Thanks for sharing!