Telling your child about his/her disability?

[breezy1077]

How, when did you tell your child about their disability. My DS7 has not been told anything and hasn't asked anything yet. I'm not quite sure I want to tell him anything as long as I can (I never want him to use it as an excuse or a question his potential). Would just like some feedback about your personal experiences. He has pdd-nos on the spectrum fyi. thanks

 

[belle&beast]

I am a speech pathologist and have worked in full inclusion elementary schools. My experience has been that by about secnd grade kids are asking questions about others' disabilities. I worked closely with two families (one has a child with DS and one with autism) to work on teaching the peers about disabilities and what to expect behavior-wise from the children with disabilities. Basically the parents came in without their child and explained some of the different things the child does. By giving the peers a reason for the behaviors, teasing and stares were virtually gone.

As far as telling your child, the one with autism would tell someone, "I have autism, so your screaming is bothering my ears..." Since the peers were taught about his differences, it made sense to them and they stopped whatever was irritatingto him.

On a more personal level, my cousin has a DS with high functioning autism and they talked about it very openly from the time of diagnosis around 4 years old. He also can tell his peers that he has autism and that is why he does things differently. They recently moved to a new state and he is in 5th grade. He has friends, plays on a football team and is doing well. He does not use his autism as an excuse, but as a reason for the way he needs to do things sometimes. He is extremely intelligent, so he does well in school, but his sensory issues are difficult socially and he has a way to explain how he feels with his peers.

 

[ireland_nicole]

DD's ASD dx is new, and her ADHD and Bipolar dx's we've only officially had for a year or so. Until then, we knew she had RAD and dyspraxia, but the only thing she knew was that everyone was special and unique and different, and that she was extra special b/c she was a miracle(she was born at 28wks after an extremely complicated pregnancy). She still doesn't "know" she has her dx's. She knows she takes medicine to help her brain work better; and she knows she sees her therapist to "help her learn to be respectful and not be mad and to learn how to talk to people and stuff" her words. Maybe we're doing it wrong, but I don't know how to put it another way. She knows that her brother who's developmentally delayed, takes sometimes longer to learn things, and needs help sometimes, but not that he's "handicapped" (OT I hate that word...). I don't know how to explain his challenges in another way that she would understand... If anyone knows a better way, I'm open to learning. (That may sound sarcastic, but it's not; I genuinly feel like I am flying blind most of the time, so if anyone has suggestions, I want to hear them.)
Nicole

 

[breezy1077]

I am a speech pathologist and have worked in full inclusion elementary schools. My experience has been that by about secnd grade kids are asking questions about others' disabilities. I worked closely with two families (one has a child with DS and one with autism) to work on teaching the peers about disabilities and what to expect behavior-wise from the children with disabilities. Basically the parents came in without their child and explained some of the different things the child does. By giving the peers a reason for the behaviors, teasing and stares were virtually gone.

As far as telling your child, the one with autism would tell someone, "I have autism, so your screaming is bothering my ears..." Since the peers were taught about his differences, it made sense to them and they stopped whatever was irritatingto him.

On a more personal level, my cousin has a DS with high functioning autism and they talked about it very openly from the time of diagnosis around 4 years old. He also can tell his peers that he has autism and that is why he does things differently. They recently moved to a new state and he is in 5th grade. He has friends, plays on a football team and is doing well. He does not use his autism as an excuse, but as a reason for the way he needs to do things sometimes. He is extremely intelligent, so he does well in school, but his sensory issues are difficult socially and he has a way to explain how he feels with his peers.

This helps. Your cousins son sounds like mine. He's high functioning (I think because he is higher on the intelligence scale - his psychologist says this is the one factor that may predict his future success in overcoming his challenges), but his sensory issues are off the chart which has affected him socially. The school recently had him leave the room and had someone talk to his peers about his condition and autism in general. they said they have noticed a difference and I'm glad, but I'm concerned that they know and he doesn't. and I'm not sure how to tell him. He has discussed with me what he's going through - for ex. he says (on his more manic days) that it feels like there's a lightning storm going off in his brain and making him go like this...as he shakes and jumps all over. He also says, when he gets mad, that his brain is all turned backwards that day. So, should I tell him, wait another year for his language skills to pick up, or wait til he asks me? Also, how do I tell him?

If there are success stories too of higher functioning older kids I'd love to hear them (although for us - just having him be able to briefly discuss his day in school is a success story right now).

Thanks for your feedback!

 

[belle&beast]

This helps. Your cousins son sounds like mine. He's high functioning (I think because he is higher on the intelligence scale - his psychologist says this is the one factor that may predict his future success in overcoming his challenges), but his sensory issues are off the chart which has affected him socially. The school recently had him leave the room and had someone talk to his peers about his condition and autism in general. they said they have noticed a difference and I'm glad, but I'm concerned that they know and he doesn't. and I'm not sure how to tell him. He has discussed with me what he's going through - for ex. he says (on his more manic days) that it feels like there's a lightning storm going off in his brain and making him go like this...as he shakes and jumps all over. He also says, when he gets mad, that his brain is all turned backwards that day. So, should I tell him, wait another year for his language skills to pick up, or wait til he asks me? Also, how do I tell him?

If there are success stories too of higher functioning older kids I'd love to hear them (although for us - just having him be able to briefly discuss his day in school is a success story right now).

Thanks for your feedback!

In my opinion, when he is telling you how he feels, which is awesome by the way!!!, I would tell him that is something called autism. It is something that affects his brain and makes him super sensitive sometimes. You don't have to go into a lot of detail, but maybe he needs to know why he feels the way he does.

I think I would do this soon because it has come up at school and his peers have a word for his behaviors.

 

[SandrainNC]

We aren't even close to having to tell our oldest son about it yet (he has Down syndrome). He still doesn't say a whole lot, so it will be a little while before he understands (or asks).

However, my nephew has aspergers with a cognitive delay (they think the delay happened separately - maybe at birth). Anyway, he is 20 now and he will use it to his advantage when he doesn't want to do something. My sister will ask him to do something and he will say he can't because he is handicapped.

Sandra

 

[bookwormde]

I am not sure that my situation will help much but here it is

We told him within a month of getting the diagnosis. He had been experiencing very high levels of anxiety at school and it seemed to help significantly.

It was very easy for me because of my family history and I think it allowed him to relate to the situation instantly.

First I went over all the benefits of being an aspie. Then I went over the challenges that he would face. I also included some non family probable aspie examples and there accomplishments. he took it all in said ok and went back to his activities.

We do upon special occasions talk about it. like when we were preparing for our trip to Disney World 2/07 and review the benefits and challenges that might affect him.

As an aside I am a great believer in education piers.
breezy1077 I assume that you had given the school permission to do this, otherwise you would have been the proud owner of a school. Our school is a little resistant and we would not do it without our sons ok





bookworm

So you know where I am "coming from" I am a 50yo sub clinical aspie dd from a long line of aspies. As I state to new people which I meet at support groups, I would have been very disappointed if at least one of my children had not been and aspie. I was fortunate to have a 8yo ds who is clinical. I also have a 4yo ds who is more to the neurotypical side of the world and a neurotypical dw.

 

[fakereadhed]

I think this issue is hard because disabilities aren't always apparent at birth. My DD didn't get diagnosed with ASD until second grade, and it took us a while to wrap our head around it. But we decided to approach it like anything else and just be flat out about it, which is hard because it is an uncomfortable subject for us to deal with ourselves. It comes up as you are discussing being at school for an IEP meeting, etc. and eventually they are going to ask questions.

As far as using a disability as an excuse, I think it's a combination of how you approach your child as well as their personality. Not much you can do about the last part. My oldest DD has Juvenile Rheumatoid Arthritis which she had since 2, but was diagnosed at 5, and we were matter of fact about that- but didn't focus on what she couldn't do. She wanted to do ballet- I signed her up. When it hurt I gave her meds, but didn't make a big deal out of it or tell her she had to quit. We approached our other DD with ASD much the same way- this is what you have going on which makes it harder for you to pick up on non-verbal cues and social situations so here's some tools for you. We don't tell her what she won't be able to do- we let her lead and try to support her. I also try to point out other people and their struggles. We've all got our challenges, but some are different than others. Nobody really gets off trouble free in every area of life.

It is not easy, especially since she's a teen now, but I don't regret being upfront about her diagnosis. She knew there was something going on- telling her what it was only opens the door to her understanding what's going on.

 

[LauraVV]

How, when did you tell your child about their disability. My DS7 has not been told anything and hasn't asked anything yet.

You know, I think kids are pretty smart and will tell you when they want to know things. Our Katie is now in the double digits. She received a service dog at age 8. When we talked about getting the dog she said that she didn't think she could have one because she didn't have any "weaknesses" (sorry, her word). I told her that she is a great kid but a service dog could help get help when she has problems breathing.

She has occasionally asked us questions that we answer with as much info as she wants. We've explained that she was born before her body was ready and that this caused problems with how her hands work. She knows she needs oxygen sometimes but we don't really talk about why.

Our girl is a smart, happy kiddo. We've explained that she (and nobody else) can be perfect. Everybody has problems and issues even if we can't see them. Our girlie is ten. She's 48 inches tall. She was born at 22 weeks, uses a w/c for distances, has mild CP, has metabolic disease, has SID, uses oxygen, and loves horses. We went to visit the NICU on her 10th birthday. As we told her neonatologist, we live today, not there.

Our girlie is perfectly OK just the way she is. She sees herself like that. We see her like that. I think it's important not to deny our individual difficulties and differences but to teach our kids to keep on trucking along. I think it's important for our kids (and us) to realize that just because someone else's life looks easy and perfect doesn't mean that's so.

I try to instill the attitude that we often cannot change our life circumstances but we can change our attitude. Normal is highly overrated anyway.

 

[Forevryoung]

I try to instill the attitude that we often cannot change our life circumstances but we can change our attitude. Normal is highly overrated anyway.

"Normal is only a setting on your washing machine"

I like to think about life is that this is what is normal for ME... I don't know life any differently and I would actually not know what to do if things were different (I view "typical" as somewhat boring!)

 

[Poohgirl]

My autistic (high functioning) Ds(10) realized he was autistic last year when I was asking my boys to shush down so I could hear some news report about autism. My older son yelled at my younger son saying "mom wants to hear this because thats what you have!" That didn't go over very well. He watched the report and started questioning me and was almost in tears. He kept telling me that he didn't have that and he was "normal". He has been Dx since 18 months and has always had different therapies etc, but never wondered why. We chatted about how far he has come and how proud I am of him for that, and that he can ask me anything about it if he has questions. He is now ok after that initial denial, he has asked questions and is very curious about info when something comes on tv but I think its helped him understand himself better.

 

[mickey&minniealways]

Two of my three kids are special needs. We are very upfront with them about their disabilities. By the way we do not like the word either. We call them learning differences not disabilities. We explain to them that they can learn it is just that they learn differently. We also let them know that using it as an excuse for bad behavior is not exeptable. When my DS now 21 was in middle school and another child was having siezures in class DS got up explained to everything that there was nothing to be frightened of. While emergency personel was attending to child he continued to explain to classmates what was going on. When he had one himself several weeks later the class took charge. One child called the main office. Two made sure he was lying down so he couldn't hurt himself. The turned his head to side to make sure if he spit up he would not choke. One child timed it while two more wrote down everything that was going on. Another student waited outside the door so that the nurse and EMS would know where to go. One young man went on to become a paramedic. Knowing what is going on is a lot less scary than your imagination. Answer their questions. You don't have to give them all the details. Our children tend to suprise us when we least expect it.