advice needed from parents of children with Developmental Disabilities

[Anonymous]

Hi there, I need some advice: I knew this day would come- my daughter (4 years old) and I were out today and she noticed a little boy with noticeable developmental disabilities. She turned to me and said mom, "what happened to that boy." I taught special ed for 10 years so I had an idea what to say as a "teacher" but I was wondering what as a parent of a children with DD what would you like to hear other parents say in these situations? As I have learned being a teacher in the past has been great but being a parent is totally different and I value a parents first hand knowledge and expectations on this issue. Thanks,

[Anonymous]

My child is on the high functioning end of the autistic spectrum, so his disability is not obvious and we don't have to deal with this directly. However, he has been in lots of therapies and programs since he was a young child with children with more obvious disabilities and the line he has always used is "that's just how he was born." I like that and use it myself with my children. "People are born different."

Of course its important to teach respect and that children (and adults!) shouldn't stare.

[Anonymous]

Young children want very concrete answers about issues like pain and bodily integrity. With all due respect to the previous poster, I find that using terms like "born different" or "that's how God made him/her" are confusing and frustrating to children because that's not really what they are asking. They are asking for specific information and they are asking to be reassured that the child has bodily integrity (freedom from pain) and they are also asking at a very basic level to be reassured that their own bodies are safe and integral.

What's wrong with her? is a question kids ask about my daughter a lot because she can't walk. What is the answer -- "She can't walk." That satisfies about 70% of kids. The other 30% ask why. Then the answer is also simple, basic and concrete. "Because she's still working on it."

[Anonymous]

PP here. Actually, if my child asked me about another child I would probably say I don't know why he can't walk, because that would be the truth. And I would never say "God made him" because it comes too close to saying that disabilities are a gift from God, which I don't believe. But "we're all born different" works in my family because it helps my son understand his own disability, that his brain works differently from other people's and its part of the array of human differences. I have to add that he has never, as far as I can remember, asked about another child's disability. It may be because he's grown up with so many kids with different kinds of disabilities.

But I think your advice is excellent and I will keep it in mind.

[Anonymous]

OP here- a good conversation.. I would love to hear from more parents....

I am Curious- do any parents out there feel that other children or parents turn away from your children or not make eye contact. I do not know if I right but I tend to try to make eye contact and have a conversation with children and their parents as I would with any other children and with their parents. I want my kids to see that I am not scared of people whom look "different."

[Anonymous]

We saw a child yesterday with a serious problem walking (don't know the nature of the disability). He had a walker and was moving very slowly and awkwardly, with his legs bent and feet splayed to the sides. My children stared at him, and after he'd passed us asked what was wrong with him. I said his legs don't work properly and he has trouble walking. I said he may have some sort of neurological disorder. Because he was walking into the PT clinic we'd just walked out of, I said he was going in for therapy, just as we had (DS was getting OT). I could see my children were a little upset by the obvious difficulty this boy had walking. My daughter noticed he looked fine from the waist up, but that below the waist he had problems. I said I hoped therapy would help him walk better, just as therapy was helping with DS's handwriting. That seemed to satisfy them, and that was the end of it.

[Anonymous]

This came up recently for us, as well. My four year old son was at the playground and noticed a child with what appeared to be mental (as well as physical) disabilities. The little boy was playing with a teenage girl, maybe his sister?, and my son could not stop staring. To show my son that this child was a playful little boy, just like him, I said, "Would you like to say hi and play with him?" My son, who is not shy, thought about it for a second and then said, "HI!" really loud. The little boy did not respond until his sister said, "That little boy wants to talk to you!" To which the other child said in a VERY LOUD VOICE, "NO!" We all laughed and then struck up a conversation with the child's mother about something totally different.

I'm not sure that was the right thing to do, but I wanted my son to know that just because this little boy looked or acted differently than him did not make him scary or unapproachable. After we left my husband asked him why he was staring at the child and if he had any questions and DS said, "No, I just wanted to talk to him." Obviously it was more than that, but we also didn't want to make a big deal out of the other child's disabilities and freak DS out. We then explained that all people are different, some talk differently, walk differently, have different bodies, and some people have disabilities that affect the way they walk, talk and/or look. We finally explained that it is not nice to stare and point, but OK to ask questions.

I look forward to hearing more suggestions on how to handle these situations because I know there will be more.

[Anonymous]

I am the mother of an almost 4 year old autistic boy who is in an autism program and has just now begun to participate in regular ed two hours a week. I know he sticks out because he does not interact with other children the same way that non-autistic children do. He is high functioning so other than his speech and certain obsessive compulsive traits, people may not know that he is autistic.

But we run into kids who are baffled by his behavior all the time and to be honest, I rarely see parents handling the situation appropriately, and nannies are even worse. People just get silent and stare at us as if there was something wrong with us. I usually explain what's going on with my child and try to put them at ease. My son needs instructions for even the simplest things to say, such as "Hi, what's your name" etc. He does not ask questions and is very loud. Rarely do kids approach him beyond the first "hi" simply because they are confused by him not answering their questions.

My advice? Don't make a big deal out of it, if you can. The more normal you act, the less your child will single out a child with disabilities. My son's teacher is wonderful and manages to help him be part of a normal setting by staying close by and encouraging other kids to play with him. It takes a lot of work, but if we all pull together, our children will not think that there is such thing as "being normal" . If you know the child's disability, try to explain it, but if not, try to encourage your child to interact with everyone regardless of who they are.

This may not work for every parent of a child with disabilities, I am just speaking for myself. I used to be very offended by parents not handling the situation well, until I had a daughter with no disabilities. I know how easy it is to take normal development for granted. And yes, please ask questions!! It eases my mind if you know why I may handle my child's behavior differently and why I seem like the crazy overbearing mom that never sits at the playground