Tuesday, July 27, 2010

The best advice I ever got about raising a kid with special needs

I got the following gem years ago from our beloved pediatric neurologist. Max must have been about two. I can't remember the context—I am sure I was reeling off some string of anxieties about what the future held for Max—when Dr. C said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing."

So simple, yet so monumentally helpful. He was right: stressing about what Max would "be" like was futile because a) nobody knew and b) being anxious and fearful wasn't going to do Max, me or anyone in the family much good.

Sometimes, I will literally just stare at Max and mentally list his latest accomplishments, whether it's saying his sister's name more clearly or feeding himself a bowl of chocolate ice-cream. Sometimes, I'll think about something he is doing today that he wasn't doing a year ago or even a month ago. Sometimes, I'll watch him struggle to do something—say, grasp a crayon—and even if my heart is sinking, I will yank it back up by mentally chanting, "LOOK at his determination. LOOK." Yeah, I talk to myself.

I can't always follow Dr C's advice—there are times when nothing keeps the worries out—but for the most part, I can. Focusing on Max's present keeps me grounded. It's alleviated the stress. It's helped me accept the cerebral palsy.

The reality of Max, when I set my mind to that channel and stay tuned to it, is awe-inspiring.

What is the most helpful piece of advice you ever got about raising a kid with special needs—from an expert, a friend, your mom, whoever?

Photo/T. Rex


  1. The best piece of advice I've ever gotten is that my daughter can do anything another kid can do, she just has to do it a little differently.

    My daughter Cate doesn't sweat and we live in Georgia, so our lives and activities are greatly impacted by her special needs. That little gem has been put into play over and over during this summer of 90 & 100 degree temperatures. My greatest implementation of that advice? The day I setup a children's wading pool inside our living room when it was too hot for Cate to go outside!

    Thank you for your blog - it's always nice to find other SN sisters out there!

  2. I love this post! It is so easy to get lost in the trap of thinking about what they cannot do instead of what they can do. I guess it is the half empty or half full thing. While I try my best to not compare I know I can do better. Thanks for the reminder!

  3. Yep....like I say, if you're going to do any comparing, it should be a yesterday vs. today, or last week, month or year vs. today exercise. The target is progress, not keeping up with the Joneses!

    Say, I like Sam's idea about the "indoor swimming pool!" A few tarps on the floor oughta do the trick! I always find great ideas here!

  4. I love the advice to look at what your child CAN do! But I'm also so glad I listened to the advice I got to network with other SN parents. It's great when your child is young to swap advice and information. But it can be even more important when the children get older and still need help and stimulation and babysitting. That's when your life starts to become very different to that of your friends with NT children. It's hard not to become jealous, and it helps to be in touch with parents in a similar situation.

  5. Am I allowed to give one even though I'm not a parent, I hope? :) I love your blog, Ellen, and avidly follow it, as well as many other parent blogs. I'm an early intervention OT who has half a minute to comment right now (in between appointments and paperwork galore); and the reason I have said half minute is one of my parents called to cancel her child's appointment today. The little girl had just gotten her casts off both legs after 6 weeks in them this humid sticky Boston summer-ugh! Mom chose to take her to the beach today instead of stay at home for our appointment today. And I say, more power to her! Live life to the fullest, whatever that means for you, and if that means occasionally canceling a therapy appointment, so be it.

    You will be happier and have that memory to carry forward, and your child will be happier. While I love love love what I do and working with kids and parents, I know that things like impromptu beach trips and times just to chill are few and far between for the families I work with. I encourage my families to take a break and just be!

    Living real life however you can is often more therapeutic than another therapy session . . . and can sometimes have better effects! :) Seize the day!!

  6. Leslie, I wanted to say I appreciated your post. My son has apraxia and we decided to take the summer off from all therapy because we needed to spend time together as a family, and it was the best thing we could've done. He's still making developmental leaps on his own and we're all feeling rejuvenated and a lot less stressed. I know that when he goes back to therapy in the fall we'll be approaching it with a better frame of mind.

    Also, Max's mom, I love your blog! It always puts a smile on my face when I see his photo at the top of the page.

    -- Li

  7. Love the advice given.

    One of the best pieces of advice that my ped has given me concerning Luke (7 w/ ASD) -- it really doesn't matter what his diagnosis is, what matters is how we go about treating/dealing with his various issues.

  8. One of the best pieces of advice I received (that actually took a long time to sink in, like years) was given to me by the NICU doctor who first told me that Jonah had grade 3 PVL. She said the usual things: no one can predict what his future might hold yada yada yada. When I asked her directly what I should look for, what I should do to fix it, she just looked at me directly and said, "Love him. Hold him. Be his mom. We'll worry about the rest."

    For the first few years I would look back at that conversation and be angry at the doctor -- how was I not supposed to worry about the rest? He was my son. I was his mother. My job was to fix him, research alternative therapies, stimulate him, make him reach his potential, etc. It wasn't until Jonah started preschool that I began to see the wisdom of that doctor's words.

    Being a mom means many things, but first and foremost, my job is to love him. Hold him up. Support him. And let the professionals worry about "fixing" him. Oh, I still research. And I still worry. Boy, do I worry. But I have found freedom in letting him just play while he's at home. Let him receive therapy in school. I try to carry over what they do, but this summer especially, we're focusing not on what's best for Jonah's physical needs, but what's best for our family's emotional needs. That means a lot of swimming. Some cancelled therapy appointments because it's too nice a day. And a lot more peace.

    Thanks for your post, Ellen. Great question!

  9. Remember that whatever diagnosis your child gets, your child is still the same child he/she was the day before. They haven't changed.

  10. Two years ago, when the doctors sent us home on Hospice to wait for our daughter to die, they said the trite "Just take her home and love her." But of course they didn't know Kate, and she recovered (not fully) and is loving life. I think back on that advice and remind myself that none of us knows what the future holds. Any one of us, healthy or not, could die today, and I don't want to spend time worrying about the future or regretting the past. Well, as much as possible anyway!

  11. The best piece of advice I got was treat her like you do your other daughters. Discipline her like you do your other daughters. Don't make excuses for her and expect the same responsibility you would of any child. That's not always easy to do, but I try to live by this. My daughter is now 5, happens to have Down syndrome, and is loved by pretty much everyone she meets. I want her to be accepted by society and making sure she is well behaved and not allowed to get away with things just because of her "special needs" will help her go a long way in life!

  12. Jillian still goes to Neonatal follow up appointments where they usually track her progression on a graph like "typical" kids. I always dreaded those appointments and Jillian could sense my dread. When I walked into the office on October 22, 2009 (the date of Jillian's CP diagnosis), the doctor (who is fabulous and we now see only him for neonatal followup) said "We're going to focus on what Jillian IS doing, not on what she ISN'T" from then? I realized that it's ok to celebrate the small milestones of grasping a crayon and revel in the fact that she IS progressing, just at her own pace.

  13. Cheryl's advice matches ours. We spent a long time comparing Ashley's development to his peers. It's normal.

    Then we started to focus on the steps he WAS making. They were the same as our other kids but just slower to come. This also helped us see the enormous personality he has. It also heightened the enjoyment we get from each of his "small milestones".

  14. I remember when we went to O's first really big diagnostic and prognostic appointment with the Pediatric Neurologist when he was six weeks old. Before the appointment, the office called to find out if he needed any accommodations such as oxygen, etc. It was the first time in his short life that I thought to myself how lucky he was to not be doing THAT badly... My poor little guy had a stroke in utero, was a preemie, and was born with severe RDS - as I told my husband, every one of my 300+ Facebook friends were thinking that Huey were lucky they weren't us, but here I was thinking how lucky we were to not be in someone else's shoes!

    It really helped me put it in perspective that someone always has it worse than you (or your child) do... At least twice a week I still think about that "Ah hah" moment and pick myself back up and realize just how lucky we are.

  15. i have 3 speical needs children ,,, and they way i treat mine is just like any other child,,, mine cannot walk or talk,, they act like babies,, but i treat them like big kids,, so they learn better,, other people look at me funny but i just keep going ,, i have people ask me how i do it every day,,, i just smile and with the lords help i can do it... very nice post,,, have a blessed day

  16. What an absolutely amazing outpouring of advice. We've all been through very different things with our kids, but there is a lot we can learn from each other.

  17. I think what stuck with me most wasn't really advice but this song.


  18. i really love this post. the best "advice" (if it was that) was "just love her." that was easy advice to follow. the other was "take care of yourself so you can take care of her" - harder to follow :)


Thanks for sharing!

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