I got a really interesting topic suggestion on Facebook recently from a fellow special-needs mom (fistbump) about talking to our children about their diagnosis. "When do you tell your child about themselves?"
She'd come across a number of parents of special-needs teens and pre-teens who had never actually sat down with their children and talked to them about what they'd been diagnosed with, and what it all meant for them. It prompted her to sit down with her 4-year-old and attempt to explain (in a positive, age-appropriate way) some of the whys and whats and hows of his own journey of evaluations and therapy and what she's learned about his brain and how it works.
This is a topic that makes me SO INCREDIBLY GRATEFUL for the specific programs we've used to support Noah: They've all managed to make the "special" aspects of the program to be things that are "there" and called them what they're called and didn't disguise them, while treating them like any other aspect of the day. The kids have circle time and snack time, but also floor time and speech group and sensory centers. Noah knows that he goes to occupational therapy and calls it OT. The kids might not really know what "OT" is quite yet, but by giving things the correct label, we're not in for a bait-and-switch revelation one day when Noah suddenly realizes that all those hours spent in was actually ... dun dun duuuun ... occupational therapy.
But I don't rely on this 100 percent, of course. Noah will be attending regular elementary school at the very place where he currently attends preschool, and I imagine at some point, kids will put two and two together and realize that kids who attended the preschool program attended it for a reason. So that's a conversation I plan on having with him first, before kindergarten, most likely. Kind of like a LOT of important conversations we parents need to have -- sex, drugs, smoking, etc. -- make sure you talk to them before their friends do.
Obviously, given everything I've written about Noah, you know I have no intention of keeping anything from him, and don't view ANY of the things we've gone through as "shameful" or something to hide. Yeah, he had delays. He also was -- and is, and always will be -- incredibly bright and talented and wholly unique. His brain works a little differently and sometimes it's challenging for us both, but man, let me sit down and tell you about the copious amounts of ass you've kicked, little guy.
When we've taken him to evaluations, I've explained that it's something like school, but that they just want to see what he knows and how smart he is, and then they'll help us make his regular school even better for him. He attends IEP meetings and we've never shuffled him out of the room while discussing therapy tactics with his teachers. He's never shown much interest in what we're talking about and why and I'm sure that will change someday, but for now, it's easy to understand why it's certainly not a big deal for him.
Some of his best little friends hardly talk. Others talk but stutter, or don't know much English, or use sign language (that Noah still knows and uses, way more than other former baby-sign-language devotees). He knows that some of his friends don't like to be touched and some miss school a lot and lots of kids need extra help with scissors. He might not know what the word "autism" means but he sure does know how to be kind and patient with his classmates who have it. He knows some kids use crutches or wheelchairs and some kids use special devices to talk. With the increased focus on Early Intervention in our area, the "mainstream" classrooms are now increasingly full of children who maybe wouldn't have been there at one point, thanks to aides and accommodations and early years of therapy and guidance.
I think this a wonderful thing, and should help make these talks with our children easier, because really, what's the big deal? I hope -- given the number of special-needs moms out there who are talking about this stuff and the diversity of available programs -- that a lot of the stigma around "special education" will continue to fade. We're all special and different and complicated. So let's continue to talk about it, both with each other and our children.
Have you had conversations with your children about themselves, or with their siblings? When and at what age? How did it go? Have you ever gotten caught off-guard by a question you realize should have been answered already?


This Hot Dad Wants to Do Your Ironing
KStew Refuses to Shower
This Hot Dad Wants to Cook You Dinner
This Hot Dad Cooks AND Does the Dishes
















Comments 8
I talked to our two autistic kids once they reached school age. I wanted them to understand why some things were more difficult for them to process, while others were way easier (math, anyone?) and why it wasn't necessarily their teacher's fault if things were hard. I also wanted them to appreciate the lengths their teachers went to in order to include them and make them successful, plus I didn't want them to treat other kids who didn't instantly understand addition as if they were dumb. I just told them that their brains worked differently, that some things (like being in loud rooms) were harder for them, but other things (like working on the computer) were easier. I said that their teachers would work with them and with me to make their school days go well, but that they had a job too, and that was to ask for help in a calm voice if they needed it instead of screaming and kicking their assistants. They've never asked me anything; I think kids kind of assume that they're the normal ones if no one tells them otherwise.
Thanks for using my suggestion, Amy! *fistbump* back atcha.
I do not judge those who do not tell their children until a certain time, but I thought back to my Korean cousin who was adopted. My aunt (God rest her soul) didn't tell her for years and she knew she looked different than her parents and brother. It became the subject of many a behavioral issue and I didn't want that or the feeling of mistrust for my son.
Yeah, he is only 4 but I did what schoolofmom said before me and told him that he brain thinks a little bit differently and that if he is confused or needs help understanding something, come tell me or his teacher. I also told him that he is SO smart and handsome and wonderful in every way. His brain thinking differently isn't good or bad, but just different.
I think Drew and Noah and many other kids in early intervention will grow to control many of their sensory needs and quirks. They will fit in better than kids in our generation and hopefully, they will be more accepting of others because of what they have experienced.
Thanks, Amy.
I am conflicted about this. Some things I have told my daughter (who is 11 and has nonverbal learning disability) have worked wonderfully, like "You have an increased sensitivity to smells and sounds, and it can get overwhelming for you." But when she was behaving inappropriately in 4th grade, which is what spurred us to get her evaluated in the 1st place, she said at dinner, "I know why I can't control my temper. It's puberty." At which I went and got a letter I'd written for her that more or less spelled out her diagnosis in age-appropriate and very appreciative language: how great she was with reading and words, and how other parts didn't come as easily, and that's why we took her to that evaluation, and that's what they found out. So great, we can help you now!
But instead of being relieved, she dropped the letter to the floor, crawled under a blanket, and wept and wept. Kind of like how I felt when she got a diagnosis, I guess, but I really thought knowing more would help her. We don't so much talk about it. She knows she goes to therapy, and that it helps, but we don't talk about the diagnosis or what it might mean for the future. I am waiting for her to show me she is ready.
We have been very matter of fact and right up front since we found out about our daughter's different abilities. She has known since she was 3 she had a sensory processing disorder, as well as other issues, which we specifically told her. As she's gotten older, we've been able to give her more information about how those issues specifically affect her. Consequently, she is very accepting of herself. When she is going through a tough time, she will usually relate it back to something that has to do with "the way my body feels things" or "the way my brain works." We have discussed it factually, letting her know that is how she is made, and she is made perfectly. So, that is what she projects to others. Now, that's not to say she doesn't have her moments where she will melt down crying, "I wish my body didn't work this way!" She is now 15, and teenage angst and hormones have kicked in. Anyway, that is what worked for our family.
Thank you for opening a discussion about talkint to our kids. My son is a wonderful, articulate, funny, smart kid. He also happens to have sensory processing disorder. Its one part of who he is not all he is. It gets in the way of parts of his physical and emotional development but not everything. He has gone to OT and has an IEP at school. He understands the conventions of the IEP, classroom helper and Neo wordprocessor are tools he uses to get his work done. They are not there because he is stupid. Around the house we have modified activities that overstimulate him and lead to behavior meltdowns but not eliminated them. If he needs a break we have headphones to tune out whatever is bothering him or gum if hes getting too loud. It's hard to yell and keep gum in your mouth at the same time. No different than the icepack in my freezer for when my back bothers me. I get it out and in 1/2 hour I feel better. He will continue to evolve and I look forward to what he discovers in the world every day!
Your last paragraph said it all. My son has Down syndrome, and I can't count the number of people who have "admired" us for "what we go through" or for continuing that pregnancy after prenatal testing, etc. And I'm honestly baffled by and alternately supremely frustrated by the attitude that being his parent is more difficult because he has an extra chromosome. So what? EVERY child is challenging in some way. Raising him is no more heroic than raising our now-getting-to-the-age-of-smartmouthing daughter, who only has 46 chromosomes. Argh!
And like you, we've never tried to hide anything from either of our kids. Our son is too young to really understand right now, but our daughter is the one who, when a child with autism threw a chair in music class, told her classmates that they shouldn't get mad at him because he didn't understand them they way they were talking to him. Instead, they needed to figure out how to communicate with him so he could calm down and listen. And she knew that because we've talked about autism, and Down syndrome, and physical handicaps, and all the other gajillion conditions she sees at our son's preschool.
I have not talked to my 4.5 year old yet about his autistic cousin and uncle. Quite simply, he just doesn't notice the differences and for now, I really want him to explore his relationships with them without labels. I know there will come a time (sooner? later?) when he will notice his cousin and uncle interact differently - thank you for discussing this. The comments were helpful as well!
Never think negative for those persons who are suffering from Sensory Processing Disorder. Because they require some attention which is very helpful for them. Normally medication is used in the ADHD treatment and it is called a stimulant. Doctors and other health care professionals will know which painkillers or anti-inflammatory drugs are suitable for the particular stage of Sensory Processing Disorder because they can easily analysis your situation.