If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

For example, a friend's DS has Down Syndrome, so it is obvious. A friend's DD has Classic Autism and doesn't speak or make eye contact- still somewhat obvious.

If your child's disability is not obvious to the outside world, do you tell them? If so, who do you tell, when and to what extent?

I am really struggling with this.

At Open School Night, they were signing people up for PTA. DH suggested that I do it. I immediately said "No". This lead to a long discussion that had me in tears.

I have always been friendly and involved- a people person. However, since DD was about 2, and all of her issues started, I tend to stick more with family.

The reason is, DD looks perfectly typical and does grade-level work in a regular class room. The only thing that the "outside" world can see is what should be a perfectly normal child.

She has outbursts, fits, tantrums, doesn't eat what other kids eat, get anxious in many settings and appears rude, nasty, wild and out of control. Who do people blame for this type of behavior? The parents..

An outsider sees all of this and wonders where we went wrong. Don't we discipline her? Doesn't she have rules? Consequences? Why doesn't she answer adults when they talk to her? Why does she find it so difficult to play with more than 1 child at a time? Why does she always seem so anxious and angry? Why doesn't she enjoy things like other kids? Why does she take so long to put on her shoes, coat,etc? Why doesn't she just eat what all the other kids are eating? It goes on and on.

We have only been in or new neighborhood for a little over a year, and already a few girls don't want to play with her, and some Mom's are a little stand- offish. As she gets older (7) her issues are more obvious. The other kids are much more mature and better able to handle their emotions. But while her behaviors are more obvious, the causes of them are not.

I worry everyday about her happiness, her future. Will she be able to make and keep real friendships? Will she be able to hold down a job? Or will she be one of those people who can't and blames everyone else. Will she find a mate? Will she ever be truly happy? Will her and I have a great relationship like my mother and I do?

I guess I just want people to like and accept her. I know that I can't control that. Her behavior is such a challenge 24/7, that it is very difficult for me to "like" her. Of course I love her, with all of my heart, but she is a very diffiicult and complex person.

So, what do you do? Do you tell people the diagnosis? Are you explicit? Vague? How do you decide who to tell and when? I want to tell people because I don't want them to think that she is a "bad" child and that I am a "bad" parent that doesn't discipline her child.

I also don't want to tell people and then she will have a Stigma. She is "that" child with ADHD, Sensory Issues and Anxiety who parents don't want their child to play with in fear that their child will pick up her behaviors.

Help!

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

DD looks typical (in fact, I get stopped often about her because, although I'm biased, she's striking to look at) and she's not behavioral. But she can't speak at an age appropriate level and other kids get frustrated because they can't understand her. She can't run like other children and is very slow. She talks to herself and prefers talking to herself over other people. It's noticeable if you watch her for a few minutes.
I tell other parents usually. I don't care about the label or the stigma. I find being open about it can be educational for some (autism comes in so many shapes and forms) and a good opportunity for people to teach tolerance. Of course it doesn't always work out that way but in the end, those are the kids/parents I wouldn't want to associate with anyway.
I'm fairly vague when I bring it up. If they ask questions, I discuss it further. 9 times out of 10, parents are empathetic.
All your fears about will she find someone, holding down a job, etc. come with the territory. One day at a time

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

I don't have any real good advice but I do know how you feel. DS is 3 and was dx at 2 with PDD. Am I even sure he is, no but do I tell the world...no. I have a 7 year old with autism and is non verbal, so yes people know, people stare and people give me the old "I'm sorry" all the time. WHY say sorry??? So I avoid it with my other guy. He talks, he understands, can communicate, yea he's got some quirks but I'm just not ready to label him. He is who he is so why do I have to call him something.
For you it's harder because your DD is older and I'm sure dealing with the parents must make you insane. Sending always remember even those who are considered typical still have their own issues, no one's perfect and if someone says something you could always just use the "it's a phase" thing.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

to the OP

i could have written your post word for word.

sometimes i say something other times i dont. it is really situational for me.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

i want to give hugsss to the OP.

DS isn't school yet he is 20 months and has PDD. I have been very open and honest about it bc I feel when people know they act better wtih him. not putting as much pressure on him to be social b/c he really isnt very social outside of a handful of people.

is it a stigma, yet but at this age i need people to back off of him b/c i dont want him getting discouraged or embarrassed. i want him to feel comfortable with himself so that when people are in his space and making him do something he may not want - read as therapists - he knows its important not to ignore them. i hope that makes sense.

i also dunno if my way is the right way. i feel like every decision i make is a crap-shoot. i keep holding my breathe hoping its the right one for him.

i also feel that i dont want people calling him stupid or slow b/c he is behind. he is non-verbal and has tantrums because he cant express his needs/wants.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

If you spent little time with DS, you would not know. Maybe people think he is quirky or shy, but most would not guess PDD NOS. And even I question this diagnosis at times and wonder if his issues are more anxiety based, but all the therapy he is receiving is beneficial either way so I assume it's correct. At this age, it's hard to tell.

But to answer your question, I tell any potential caregivers absolutely. If it scares them away, they shoudnt watch him. Immediate family know, relatives we rarely see do not. A few close friends know, less close do not. My supervisor at work and a few close colleagues do. It has a lot to do with my comfort level discussing this, it has only been a few months, and I am just starting to tell a few additional people.

If you do not want to talk to everyone, then you should not. But I also wouldn't hold yourself back from things you would like to do such as the PTA.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

to the OP....

AJ has classic autism, i have always been very open about it, i tell people all the time even if they dont want to hear it.

he was DXed at 15 months old (18 months old it was on paper). i never shyed away from people, and if i met new people, i would immediately talk about AJ, my son who is autistic.

i am not sure really what to say... when you look at AJ you would never know he is ASD, but his behaviors, tantrums, and when people invade his space, all hell breaks loose.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

have to give you

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

It's situational for me too. I am pretty open about it with family and close friends because I want them to understand and know him better - something that makes life easier for all of us. The problem I have with them sometimes is that they minimize or deny what I see and live with daily and that is frustrating in its own way.

With strangers or people I don't know as well, I say something if I feel I need to. I want to encourage him to do things with peers without announcing his diagnosis every time. I am not embarrassed or ashamed, but he is pretty high functioning, so I want to challenge him to do what the other kids do whenever possible. When he struggles or I see him doing inappropriate things I will sometimes mention his diagnosis, or I will just mention that he has some delays. My DS is very tall for his age, so people think he should be behaving at a level even higher than his peers' age group.

It's something I struggle with sometimes because on the one hand, I don't want his diagnosis and delays to define him and I want to challenge him, but on the other hand I think the only way we raise awareness is to talk about it with other people. I also reveal more to people who seem to be open to hearing it, but maybe those aren't the ones that really need to hear it.

I also don't worry to much about what other people think. I know I am doing the best I can and there isn't too much more I can do. I worry more about helping him correct his inappropriate behaviors and when I focus on that, I find other people don't have too much to say.

Message edited 9/19/2011 11:36:35 AM.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

I don't feel like telling perfect strangers. It's on a need to know basis or when the situation requires it.

Most people don't understand anyway and if they do they just start giving USELESS advice.

And while I have been very open about talking about it here, I don't advertise my child as SN anywhere else.

All our friends know about DS. The rest... well, whatever!

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

I am very open on here.
Out in public, not so much.

DS has PDD. The only time it's noticeable is if he's stimming and even then, I notice it, but, others don't see it. (He's learned to "tone it down" on his own).

DD has Down Syndrome. Some will come up to me and/or talk to her. They will ask how old she is. I tell them "2". If they question "2" back, I reply with "Yes, 2....she was a preemie". That's what I leave it at.

There were 2 recent times where I was approached, they talked to her and then told me they to have relatives (one had a brother and one had a son) with Ds, so, we start talking. If someone notices it, we'll talk about it, if not, I just tell them "Yeah, she wanted to meet us early".
As she gets older, it may be more noticeable, but, I'll worry about that when the time comes.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.

DD has PDD-NOS, severe anxiety, has selective mutism and sound sensory issues.

Just meeting her though you would never know she was diagnosed with anything. She's super happy, smiles, says hello to everyone, has no behavioral issues but once your with her for an extended period you start to notice she's a little "different". That being said I do not hide her diagnonis. My entire family and friends know and I'm pretty open about it. People we just meet, or see occasionally, like on the playground or at dance class, I do not say anything unless I need too. Like the other day a police man was by our house and started talking to DD. She said hello, but after that just basically stared at him and wouldn't answer anything. He kind of looked at her like, "why are you ignoring me" so I told him. Mainly because I didn't want him to think she was being rude.

And as far as the PTA is concerned, JOIN! I am totally in the belief the more the school sees/hears from the parents the more invested they are. PTA is just as important to a special needs child as a "typical" child. Also join the SEPTA, they can be of great help if needed.

Re: If your child's disability is not visibly obvious, do you tell people about it, or keep it to yourself.