Accepting intellectual disability

[Anonymous]

For the first time, the term ID came up as a real and likely possibility for our young child. It wasn’t a surprise, but still felt like the wind was knocked out of me. Of all of the disabilities it seems my child has, this is the one I feel least able to accept. How have others dealt with this? Will I always be grieving?

[Anonymous]

It’s tough. But for me rather than grieving I went into high gear to help my son get as far as possible. I actually think that knowing helped me because I was no longer hoping or deluding myself into believing that with the right service or intervention things would be different. I guess it helped me focus. But the loss is real.

[Anonymous]

My DS is 15 and we’ve always known as well but it didn’t really sink in until mid elementary (like 3rd grade). Making myself accept it more made things a little easier to deal with, like celebrating the little accomplishments (like pooping on the potty without having to be reminded to go do so). Doesn’t mean I don’t grieve.

He is also in a wonderful school that goes to 21 which we (and he) are very happy with. I think that in itself helps because I know he’s happy and being treated well.

It also lessens the punch about all the medical issues he has. School is so supportive - 2 teachers even came to the hospital (right before COVID) to visit him.

[Anonymous]

Wow - may I ask what the name of the school is?

[Anonymous]

It sucks. Because it starts out with everything your kids can't do, may not do for years or will never be able to do. All the ways they will not be like most of their peers developing quickly and advancing. It comes with fear of what will come of them, how can you financially support and provide care them possibly for their lifetime. It comes with a lot of feeling sad for all the will miss, all you will miss. There is a lot of isolation.
Then it also comes with the simple joys your child experiences and that you experience with them. As you learn to accept were they are there are moments where the worry fades. There are spaces and doctors that give you hope for a different but full life. Therapeutic things that don't fix but do often improve life.

It sucks. It also new communities to find and a lot of good things to focus on too. Hugs

[Anonymous]

Anonymous wrote:Wow - may I ask what the name of the school is?

+1

[Anonymous]

My kid has a genetic disorder where the mean IQ is 30. She is a baby cognitively forever. It is heartbreaking. She barely interacts with the world.

But, I’ve been dealing with this over a decade and I don’t wallow every day. It is what it is.

I don’t want her to outlive me because I can’t protect her. But I have no control over that and she is very healthy.

We have found good caregivers and luckily make enough money to keep them around. We have accepted that she stays home fairly often while the family does stuff.

[Anonymous]

There are subcategories within the dx ID. Some of you are comparing apples and oranges.

[Anonymous]

Anonymous wrote:There are subcategories within the dx ID. Some of you are comparing apples and oranges.

I totally agree, but the OP didn’t specify where her kid stands. Mild, moderate and profound look vastly different.

[Anonymous]

OP here. We have only just heard the term for the first time. I don’t know the level of disability yet. Certainly not able to be mainstreamed. I don’t even know how we tease out the level or it’s implications.

And thank you for the candid responses.

[Anonymous]

Well don’t accept it as gospel yet. How did you get the dx? Neuropsychological testing? Medical related? Your kid is not his test scores. Don’t let the dx stop you from looking for the best education for him. My kid has lots of dx but most on impact his life minimally.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Wow - may I ask what the name of the school is?

+1

NP. Kennedy Krieger has a school that goes to age 21.

[Anonymous]

I don’t understand people asking what schools go to 21. Public schools are required to keep kids until 21 in this situation. That is what my daughter will do. She gets retained one year in elementary, one year in middle school and one year of high school. She will leave on her bday without a high school diploma.

[Anonymous]

Anonymous wrote:I don’t understand people asking what schools go to 21. Public schools are required to keep kids until 21 in this situation. That is what my daughter will do. She gets retained one year in elementary, one year in middle school and one year of high school. She will leave on her bday without a high school diploma.

I realized I should be more specific — this is required if your kid is not diploma track.

[Anonymous]

My child has limited verbal ability, so what is the best way to assess ID in that case?