Q&A: special needs child

Katie writes:

"I have a 3-year-old son with autism and figure at least some of your readers have experience with special needs. My boy was diagnosed as having moderate autism just before he turned 2, and I am so proud of how far he has come. (I could write a whole separate e-mail about all of the therapies and interventions he has endured.) He is very verbal now and, though he is in a special preschool class, I believe he will be mainstreamed into a regular classroom by elementary school and be almost indistinguishable from his typical peers.

My dilemma is whether I should ever tell him about his autism. He hears me speak of it often now; I have no qualms about telling someone he is on the spectrum, partly because it explains some of his behaviors that new friends may find odd, and partly because I am so proud of all the progress he has made. But he is getting closer to the age when he will really pick up on what I'm saying when I speak to others about him.

I don't want to completely ignore it or act as if it never happened or make it into this big secretive talk--"Son, let's sit down for an important talk about something terrible about you." It is a part of who he is, a part of his past and present. I guess what I'm looking for is wisdom from others who may have gone through this before. Do I stop mentioning it so much? Do I wait for him to ask me something down the road? Do I phase out the word "autism" as his symptoms show up less and less?"

Hmm. On the one hand, I feel like he's going to know there's something different about him. On the other hand, you don't want him to grow up thinking there's something less about him. So how do you balance the two--acknowledging that he's got some things that are different about him but also letting him know that he's great the way he is?

I wrote that first parapgrah three weeks ago, and have been sitting on this post ever since, trying to figure out what to write. The fact is, I don't know what it's like to have a special needs child. It would be disingenuous of me to talk about it, I think, because I've never had the experience of parenting a child who isn't always going to be received easily by the world. (I definitely think I have a special responsibility in raising two white men in America, but that's a different post.)

I'd love to hear from moms and dads of kids who don't fit neatly into the boxes that we expect kids to fit into. Not just kids who have autism, but kids who have any other kind of developmental issue, kids who have chronic illnesses, kids who look different.

How do you manage their "issues" (treatments, therapies, medical inteventions, etc.) while still loving and respecting them as people? How do you straddle the line between living your experience as the parent of a special needs child and honoring their experience as a special needs person? What if the "special need" is something that isn't recognized by the larger world (like being a highly sensitive or spirited person)?

Please talk about it. If you want to link to other supportive areas of the internet, please do. (If you type in the http:// before the www part of the address it'll automatically hyperlink so people can just click through your comment.)

Comments

[anon]

I work in a private elementary school. A few years ago we had a child transfer in who had Asberger's, one of the clearest cases I have seen. He was high functioning and extremely smart but he got hung up on things. And was socially awkward. But fine, really. The problem was his parents who had him secretly diagnosed but refused to allow the school to "know" the diagnosis because they didn't want him labeled. So everyone had to just pretend all was well. Fast forward a year and the thing he was hung up on became a student, a girl in his class. He had what I guess was a crush that he didn't know what to do with. He became violent with her when rejected. Eventually, after warnings, he was asked to leave the school because he could not control himself around her. We couldn't address it as what it actually was because they didn't want to label it. And that poor child had no idea why he acted the way he did and why he felt so out of control and different and weird. And it broke my heart. If they had faced the actuality and then discussed it with him and given him more strategies and maybe even allowed us as a school to discuss it with parents and kids in his class.... I don't know. It seems like it might have turned out differently.

I think all kids should discuss how they learn and think. All of us do it differently and knowing yourself in that way can ONLY be beneficial.

[anon]

I work in a private elementary school. A few years ago we had a child transfer in who had Asberger's, one of the clearest cases I have seen. He was high functioning and extremely smart but he got hung up on things. And was socially awkward. But fine, really. The problem was his parents who had him secretly diagnosed but refused to allow the school to "know" the diagnosis because they didn't want him labeled. So everyone had to just pretend all was well. Fast forward a year and the thing he was hung up on became a student, a girl in his class. He had what I guess was a crush that he didn't know what to do with. He became violent with her when rejected. Eventually, after warnings, he was asked to leave the school because he could not control himself around her. We couldn't address it as what it actually was because they didn't want to label it. And that poor child had no idea why he acted the way he did and why he felt so out of control and different and weird. And it broke my heart. If they had faced the actuality and then discussed it with him and given him more strategies and maybe even allowed us as a school to discuss it with parents and kids in his class.... I don't know. It seems like it might have turned out differently.

I think all kids should discuss how they learn and think. All of us do it differently and knowing yourself in that way can ONLY be beneficial.

[Nicole]

@marci, My little boy was born with Congenital Toxoplasmosis. It was devastating to me as I had had the "perfect pregnancy" complete with doula, no morning sickness, yoga every day, organic foods and swimming in the tropical ocean almost every day, and giving birth actually on my due date. I felt exactly that same rage of how could this happen to me! especially when I see the iceheads next door just had another baby with apparently no health problems. Although my little boy is doing very well, he does have scarring on his retinas and we won't know if that affects his close vision for a couple of years, some children with toxoplasmosis have learning disabilities and although it doesn't seem like my buddy will I don't think we'll know til we get there. I have been wondering the same thing, how do we tell him? His treatment will be over at 1 year, and then we'll have to have periodic eye checks for recurrence every 3 months. I don't want his world to be all about his "disease" I want him to know he can do anything he wants to do, I don't want him to feel different or less than anyone else. And I especially have agonies of the heart that people in my own family seem to only care about his health issues, not that he is wonderful and smiling and cheerful and rolled over at 3 months, and has two teeth and sleeps through the night and is charming, flirty and fantastics, and looks to be about to crawl at 5 months.
Even my own sisters seem to have ignored him because they just don't know how to deal with the fact that my baby was born with problems, and we might not know the extent of them for a while. I so hear you when you say that you are angry at everyone, even other pregnant women, I went through the same thing where I didn't want to hear about anyone else's baby or birth experience because mine was so traumatic. Picture a yogini who started labor out at the beach, and ended up with a c-section and the baby being transported by a special teamto the children's hospital NICU. It was about the farthest thing from my imaginings about my baby's entrance to the world that could have happened. Anyway - thanks for the chance to vent.

[Nicole]

My little boy was born with Congenital Toxoplasmosis. It was devastating to me as I had had the "perfect pregnancy" complete with doula, no morning sickness, yoga every day, organic foods and swimming in the tropical ocean almost every day, and giving birth actually on my due date. I felt exactly that same rage of how could this happen to me! especially when I see the iceheads next door just had another baby with apparently no health problems. Although my little boy is doing very well, he does have scarring on his retinas and we won't know if that affects his close vision for a couple of years, some children with toxoplasmosis have learning disabilities and although it doesn't seem like my buddy will I don't think we'll know til we get there. I have been wondering the same thing, how do we tell him? His treatment will be over at 1 year, and then we'll have to have periodic eye checks for recurrence every 3 months. I don't want his world to be all about his "disease" I want him to know he can do anything he wants to do, I don't want him to feel different or less than anyone else. And I especially have agonies of the heart that people in my own family seem to only care about his health issues, not that he is wonderful and smiling and cheerful and rolled over at 3 months, and has two teeth and sleeps through the night and is charming, flirty and fantastics, and looks to be about to crawl at 5 months.
Even my own sisters seem to have ignored him because they just don't know how to deal with the fact that my baby was born with problems, and we might not know the extent of them for a while. I so hear you when you say that you are angry at everyone, even other pregnant women, I went through the same thing where I didn't want to hear about anyone else's baby or birth experience because mine was so traumatic. Picture a yogini who started labor out at the beach, and ended up with a c-section and the baby being transported by a special teamto the children's hospital NICU. It was about the farthest thing from my imaginings about my baby's entrance to the world that could have happened. Anyway - thanks for the chance to vent.

[OlderSiblingHadAutism]

Many good things have been said. This is such a fantastic site for advice and support.

Quick word from the point of view which your younger son might share. I too was the younger of two children, whose older sibling was on the spectrum of autism - in my case, this was kept a secret even within my family. This diagnosis was revealed to me as a young adult by one of my parents.

Everyone in the family needs to know what the problems are in the family. I for example, have trouble sorting out bad times from the past and making sense of what was nuture/choice/personal decisions which led to vs. what was the unexplained (to me) mental illness. From my own personal pain, I definitely urge you to make sure that the brothers are good to one another. It sounds like you are a thoughtful mom with great support so I am confident you are all going to be ok.

Best of luck!

[crowdSPRING]

I think all kids should discuss how they learn and think. All of us do it differently and knowing yourself in that way can ONLY be beneficial.

[crowdSPRING]

The Depression is what I'm thinking. Because it was very clear that my grandfather was not socially-normal by anyone's measure.

[Jagadguru Kripalu Parishat]

Children can have a really long wait for a wheelchair. It is agreed that it is needed and nobody pays for it.