advert

Talking to Your Child About Their Special Needs

Sep17

by

Hi Amy,

I am probably way jumping the gun here, because my son is three. And also clueless. And also Autistic.

He goes to a Special Ed preschool and has speech therapy and OT and has Behavior Services come to the house a couple times a week. It’s all normal for him. He doesn’t know, doesn’t care that other kids don’t do the same thing.

So when do you tell him? That, you know, he’s a little bit different? That he sees the world differently than most people? That most people look at other people when they talk to them, and yes, I know it’s hard for you, kiddo, but that’s how the rest of the world works and you might have to work a little bit harder at it. That most people actually HAVE facial expressions, and that you don’t, and it’s hard for people to figure you out, little man. You’re kind of an enigma.

I know you’ve touched on this with Noah, and how kids in his kindergarten class had no issues with the kids who were dismissed for their Special Ed classroom. Is it still the same in first grade?

I fully expect my son to be mainstreamed when he reaches kindergarten, probably still with speech therapy for communication skills. But at what point is it beneficial for him to know WHY he’s doing ST? And WHY he sees the world differently?

Thanks for the insight!
Planning Ahead Mom of Autistic Kid

Well, this timely. Yesterday afternoon — while in the waiting room of my son’s private occupational therapist’s office — I had a long conversation with another mother and we touched on this issue. Our children are close in age (first grade and second grade) and have basically followed the exact same path/trajectory: early intervention, disastrous attempts at mainstream preschool, two years of our district’s preschool, then to the LAD (Learning & Academic Disabilities) program. They are still split up between general education and LAD, and still receive extra services privately to supplement their IEPs.

And she half-admitted, half-marveled that her son has never, ever asked any questions: why they come here, what is OT, why do I leave my homeroom, etc. It’s just a fact of life for him. Something he does, and something he’s completely comfortable with. Or at least comfortable enough to not question or particularly care about.

Same here, I said. Mostly, anyway.

A few weeks ago one of Noah’s neighborhood playmates rang our doorbell just as we were getting ready to head off to his OT appointment. Noah promptly informed him that he couldn’t play just then, because we had to go see “Ms. M___.”

“Who’s Ms. M___?” his friend asked.

Noah paused. He’s known her since he was three-and-a-half years old. But…who is she to him, exactly?

“She’s my grown-up friend,” he answered. “We play together.”

“Oh. Okay!” came the satisfied response. “Can Ezra play then?”

(Interestingly enough, “grown-up friend” is how I’ve heard Noah describe other people, like our babysitter or close family friends.)

When we started seeing a psychologist this summer, I asked her how I should explain the visits to Noah. She said to tell him that she was a friend of ours who was very, very good at talking to kids about their feelings. They would play together and she was a really good person to talk to about his feelings, if he wanted to. She felt that was usually enough. (Sometimes even more than enough, because the truth is little kids are often kind of used to not having every destination or person in their life fully explained to them.)

Personally, I try to avoid overwhelming Noah with information that he doesn’t ask for. It’s not that I’m hiding anything, but it’s more because that’s just how Noah operates and processes the world. He is incredibly curious about a (sometimes narrow) field of topics, and will tune you out faster than a speeding train full of dinosaurs and Legos the minute you start boring him. I have a difficult time getting him to listen to me fully answer questions he’s asked me before he has already moved on and changed the subject. The idea of sitting him down for some big involved heart-to-heart about “why he’s different” is just…well, it’s just not a good fit for him. I kind of have to laugh at how WHOOSH, over his head it would all go.

Your son might be different. I think so much of this stuff varies, and you should trust your own instincts. But for now, for my son, I choose to supply answers that are asked for, as they are asked for.

This approach doesn’t mean I don’t think about what to say to him, because I do need to be ready with a reassuring script at any possible moment. He is nothing but a non-stop source of surprises and cognitive zig-zags.

This summer, right before school started, Noah climbed into bed with me and snuggled under the covers. And then out of the blue, began to list a very specific, VERY self-aware number of school-related things that he was worried about.

He was worried he wouldn’t be able to listen. He was worried he would get in trouble for talking out of turn. He was worried his teachers would give him warnings all the time for not listening or getting mad over transitions and a number of other impulse-control-related behaviors.

You know what? I always thought hearing Noah acknowledge his struggles would send my heart through the wood-chipper. Instead, my heart soared, because the fact that he recognize the exact, specific behaviors that he struggles with is a HUGE and NECESSARY step towards learning to fully and finally control them, or better cope with them. Yes, he’s beginning to sense that he’s different — he didn’t need me hammering that fact in prematurely, but he did need to know that he could talk to me about it.

And so we cuddled together for a long time, and I tried my best to explain:

Yes. Honey, I know all those things are hard for you. I know those things are harder for you than they are for other kids. Your daddy knows, your teachers know, Ms. M___ knows. And so we’ve all sat down together and we made a plan! A plan just for you. It has your name on it and everything. And that plan will help you with all of those things. And Daddy and Ms. M___ and your teachers and I all promised each other that we would work as hard as we could to help you too.

I waited for follow-up questions about the plan…if he wanted specifics, I’d explain that going to see Ms. M___ each week was part of it, and leaving his big homeroom for the smaller special ed room for math and reading was another.

But he didn’t ask any follow-up questions. He didn’t change the subject, either. He was quiet for awhile, thinking over everything I’d said, processing it.

It was so tempting to keep talking while I had his full attention — omg he’s listening and absorbing I should shower him with everything else I want him to know I love you I’m proud of you You’re perfect Don’t let anyone tell you you’re not It gets better etc. etc. 

“Okay,” he said. “That sounds good. I am glad there’s a plan.”

Me too, kid. Me too!

Photo source: iStockphoto/Thinkstock

About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


Subscribe to posts by Amalah

10 Responses to “Talking to Your Child About Their Special Needs”

  1. Amy Sep 17 at 11:43 am Reply Reply

    When I was student teaching in the high school mild mental handicaps field (that’s what we called it then, anyway) we had a high functioning girl with autism who had never been told that she had autism.  She was about to turn 18, and by law the teacher had to start including her in her own IEP meetings (because services extend until age 21), and the mom was HORRIFIED that we were going to tell her nearly-adult daughter her own diagnosis.

    Yeah.

    So, as an educator and not a mom (well, I am a mom but I have my fancy teacher hat on now), I feel like this discussion needs to take place at some point or another.  You don’t want your kid’s first knowledge of their diagnosis to be their 18th birthday present.  My instinct is that it should be approached sort of like adoption.  Say the word “autism” in front of your child often enough, and matter of factly enough, that it just IS…  Make it something that’s out in the open and dealt with, not some shameful secret.  He’ll take his cues on how to react to the “news” from the way you present it.  Be positive.  “This is how you’re special and different.”  Especially with a high functioning kiddo.  Because you don’t want to be threatening to sue your kid’s teacher in 13 years because she wants to tell your child what her diagnosis is without your consent.  :(

  2. Katherine Stone Sep 17 at 12:45 pm Reply Reply

    My daughter has been going to OT since she was 2 for SPD and she’s never asked either. She hasn’t asked why her brother doesn’t have OT. Or whether her friends go to OT. Or why she goes to OT. She’s never thought about it at all. I imagine she will someday though, so I suppose I need to be a bit more prepared. Thanks for this. 

    ~ Katherine

  3. Lauren Sep 17 at 1:46 pm Reply Reply

    Wow. I really love this. That is such a good way to frame it- as a plan all the grown up friends have. Thanks! I’m an OT and I often struggle with what to say when kids ask me why they play/work with me. I’d like to leave it up to parents, but I also don’t leave their questions unanswered.

  4. Isabel Sep 17 at 2:05 pm Reply Reply

    Thanks for this post. My 6 year old son has a speech disorder. And, unlike others, he’s been aware of it for a very long time. Maybe because he’s been asked by more then one person where his “accent” is from and we’ve had to explain to him that he has some problems with some of his words. Which didn’t seem like it was news to him.

    His has a speech therapist that comes to our house once a week. He calls her his “lady” and loves that she comes to see just him. When others have asked who his Lady is he’s happily replied, “she’s my Lady!” The special attention he gets from her sends him to the moon.

    Like Noah, he just started first grade and is (thankfully) not embarrassed by his speech. I worry about the day when something happens that will make him too embarrassed to speak outside our safe little house. His speech is improving greatly, but I feel like it’s a race against time to improve it before too many kids notice.

  5. Saffron Sep 17 at 4:44 pm Reply Reply

    I have a 13 year old lad with Cerebral Palsy, and Learning Difficulties, at the moment he is functioning at the age of 6 or 7. (I also live in the UK)
    I have found, that honesty is the best policy, both with my boy, and his peers from his old school and friends outside of school, (the children in his new school, also have learning difficulties, therefore J is in the same boat as them)
    I think the thing to do, is to try and keep our children integrated outside of school with the children of their age group and recognise that there will come an age where the children naturally divert, (which would be 12 in the UK, when the British Children go up to high school) and that when J’s friends are more mature adults, let’s say around the age 18, they will come back together again. It can make for a future which is slightly more complex than other children’s. But as we wax and wane through life we naturally discard some friends and pick up others.
    Heh, that’s not at all what you asked – sorry. But to go back to your question, my boy asked, I was truthful, and always answered with a leading comment, in the hope that if he wanted more information it would progress, sometimes this happened, sometimes not.
    And, when it comes to all our children, whatever their ability, I always live by the motto, ‘We can only make decisions with the information we have today’ it makes for less stress on J, and us as parents.

  6. Saffron Sep 17 at 4:48 pm Reply Reply

    Sorry, I meant, ‘when J’s MAINSTREAM friends are more mature adults, let’s say around the age 18, they will come back together again’

  7. Anne Glamore Sep 17 at 9:34 pm Reply Reply

    My son was older when he was diagnosed (5th grade)  and we had to come up with some explanations as to why he was suddenly learning idioms, and being taught how to carry on basic empathetic conversations, and visiting various doctors and therapists.  At first  he was satisfied just hearing “Asperger’s” because, you know, “ASS BURGER.”  Rule 1 :  Don’t say “Ass Burger” at school.

    But as he has gotten older it is clear he is a deep thinker and a huge part of my ability to assess his needs comes from that bedtime cuddle, when he is relaxed (for him) and will SAY what is worrying him, so we can MAKE A PLAN. 

    Making a plan, and having third parties aware of the plan has really freed him up – to try sleep away camp, Boy Scouts, rock concerts (Not a fan – LOUD and CROWDED).  

    So YAY to both of y’all for having that cuddle and communication time.  Even if they can’t say they love you (so frustrating!!!), knowing they trust you is worth so much.

    Like Noah, often he will ask one question, then mull over the answer for a few days and then come to me with a followup.

      I LIKE that he expresses his anxieties and together we think of ways to address them.  We may have lots of very SOFT BLUE clothes, a love of anything building related and an odd fascination with unicycles, but overall, things are going ok.

  8. wealhtheow Sep 18 at 11:18 am Reply Reply

    My almost-five-year-old son has an articulation disorder, SPD, and undiagnosed ADHD (as in, his developmental ped doesn’t like to diagnose kids his age unless they need it to qualify for services, but when I told her I’d need a diagnosis by mid-year kindergarten to keep him in services, she said “Oh THAT’S not going to be a problem.”).

    Gorwing up with ADD myself, I was pretty aware I was a little different. So when we started going to doctors, I told my son, “Your brain works a little differently than most other people. You have a racecar brain–it’s really fast, and really strong, and really smart! But you have bicycle brakes. It’s hard for you to stop and make good choices sometimes. Things that are easy for other kids are harder for you. But you know what? Things that are hard for other kids are easier for you. And you know what else? Mom’s brain works the same way. Lots of people have brains that work a little differently. It’s part of what makes other people so interesting.” 

    The racecar brain/bicycle brakes model is from Edward Hallowell, and I highly recommend anyone who has anyone with ADHD/ADD in their lives read his books. I tell him he goes to OT to learn how to make his bicycle brakes stronger. 

  9. wealhtheow Sep 18 at 11:24 am Reply Reply

    Also, DUDE. AMY. I cannot even begin to tell you what a godsend it has been hearing stories of Noah’s progress. I think my son is … I don’t know, I don’t want to say “higher functioning,” but less challenged? Less atypical? Well, whatever, he’s less than Noah, and it has STILL been emotionally brutal to help him figure things out. In some ways even more so now because he’s just starting to encounter some peer pushback for his, as I like to call them, “unique qualities.” Seeing other kids ostracize yours at a party and knowing exactly why they’re doing it? Heartbreaking on about a gazillion different levels. 

    But reading about how far Noah has come and all the things he is so successful with gives me SO. MUCH. HOPE. You and Noah are my lamp-post in the foggy night, about a mile down the road. Thank you. Thank you. Thank you. 

  10. VG Sep 24 at 1:07 pm Reply Reply

    From someone who didn’t have the dealings you all have with your children, I had a physical situation and learning about it as you grow up does help. You can physically tell there’s something different about me, and kids are like little radars for anything different, no matter how minute it is. Learning about my issues helped me better understand what was happening to me and also to feel more comfortable with myself in my own skin. This is a build-block to having a good sense of self and awesome self-esteem. The teen years will SUCK ASS at times (sure did for me), but the good times do outweigh the bad. Good luck to you on this journey Amy & OP.

Follow us on Pinterest

Close