Do you consider your autistic child special needs ?

amother

Wed, Jan 31 2024, 2:59 pm

I know this seems like an odd question - here is the context.

There are many organization that cater and are a support to special needs children .
My daughter is a newly diagnosed autistic adorable little girl. She doesn’t speak yet but she sings and is just so sweet . She definitely is delayed and in her own happy little world and markedly different than all my other kids.
On one hand she is more challenging and there is the unknown future and I would love a support group or chizzuk
On the other hand , there are kids with far more special needs than she is than she is and although I feel like the trajectory of my other kids is more predictable in reality it isn’t and it is just an illusion of control .
On the other hand she is challenging but on the other hand all life is hard

amother

Valerian

Wed, Jan 31 2024, 3:37 pm

amother OP wrote:

I was in your place not so long ago…

Personally it’s a yes for me ( though I do prefer support needs over the term special needs)

You don’t need to be drowning in order to ask for help and get support.

I’m also telling this to myself at the same time since I have not found the support I need yet

amother

Indigo

Wed, Jan 31 2024, 3:39 pm

Are you asking because you want to know if the organization will feel that you fit the criteria or because it's not the way you identify with it? I've been there and it's very hard. For me the term neurodivergent has been resonating more for the last couple of years but there are times when I fleetingly think of that child also being special needs (also because I have another more obvious one).
I think it's part of the journey of how our children's development evolves and our acceptance of it at each stage. And it is not stagnant, and keeps changing. Every phase comes with it's own phase of acceptance of a new/different reality too.
Hugs! You are not alone!

amother

Thu, Feb 01 2024, 2:31 am

My daughter is 3 years old . I guess my question is more what do I identify with rather than actual support. Every so often my husband wishes for a shabbaton or something where he can get chizzuk I feel like these support groups are around but more caters to special needs kids .
she is in a therapeutic school and has classmates that are DS. In some ways some of her classmates are more advanced than her but I still have a hard time identifying as a mom of special needs . Not because I am embarrassed or anything … not sure

amother

Indigo

Thu, Feb 01 2024, 9:04 am

amother OP wrote:

It makes sense because autism can be less concrete especially when younger. It starts off as developmental concerns and even once you have a diagnosis, there is no way to know what your child's needs for support will be - a bit extra in mainstream school with some social difficulties to non verbal and needing instense support in a special ed program or anywhere in between. And needs and differences change and evolve with time and age appropriate developmental demands. Social differences can become more apparent especially in preteen/teen years (at least from my experience).
It's a diagnosis that leaves you feeling a bit in the gray until you figure out where you comfortably identify and that can keep changing.
Don't worry too much about it, you are exactly where you are supposed to be in this journey at this point in time, whatever your perspectives may be. You have the acceptance that you need and are helping your child in the best way you can. That's all that matters.
If you need further support then by all means reach out for it. Autism fits the special needs category enough not to deny yourself something you can benefit from and need IF you are emotionally ready to go there. It is a hard step to take emotionally but if it is needed it will come in it's time. And it's ok if you and your husband feel differently about it!

amother

Valerian

Thu, Feb 01 2024, 9:07 am

amother OP wrote:

I totally relate!
You don’t need to feel the same way about it every day.
While I always know that DC meets the technical definition and requirements for special needs I don’t always feel the same way about it.
For example if we are in a good season or just not seeing many children in that age group it just feels like normal to me (because this is our normal)
But during a regression or when I’m with people who have the same age kids and watching them meet all the milestones that I can only dream about right now then it feels quite different in the moment

amother

Clematis

Thu, Feb 01 2024, 9:26 am

Like an above poster said, sometimes it is hard because certain things are less concrete.

I have to add that we all know that there is a spectrum, and where a child falls on that spectrum will play a roll in how many special/high needs they have.

My DC is high functioning and mainstreamed. Child has a pretty full time ABA therapist in school (does it bother anyone else when it’s referred to as a shadow - cringe).

I think part of the “challenge” is that autistic children, unless very low functioning, “look normal”. Hate to say it like that, but I do believe that’s it.

If a 6 year old visibly SN child is “acting up” or “different” - people can see why. If a 6 year old autistic child is - people aren’t as forgiving.

That was a bit of a ramble.

Either way, I have friends with (lower functioning) autistic children who get so much so support from these groups. Even though some women are dealing with different or “larger” challenges.

amother

Cerulean

Thu, Feb 01 2024, 6:34 pm

I do but can't share it. There are no organizations where I live so I don't know how I would feel if I lived in NY or NJ.
I also notice the differences more as my kid gets older- the gap gets wider.
She is 2E- autistic, adhd and high academic/cognitive abilities. We had her tested. She gets bullied at school but is so sweet. And academically is doing well.

We tell people she has ADHD but due to stigma can't say autistic as she is so high functioning. People treat her differently enough as it is.

She does have higher needs. And has special needs. It is tough as I am doing it with zero support. Oh and the local government agency to help with special needs is balking at helping at all because too high functioning and too smart. But she can use the funds for help!!! Just because she is verbal doesn't mean she doesn't deserve help. (Insurance won't cover anything. They had 1 speech therapist within an hour of us and was awful.)

amother

Royalblue

Thu, Feb 01 2024, 6:47 pm

I call the children with ASD, the invisible special needs kids. Invisible because more often than not they present as regular children while their behavior is very challenging. And because you can't see the 'Special needs ' like you could with a down syndrome, they are expected to conform like regular children.
This is extremely hard and anyone with an ASD child deserves all the support they want/can get.

May we all gave koach to bring us these special neshomos

amother

Jean

Thu, Feb 01 2024, 7:37 pm

amother Clematis wrote:

Yes, this exactly. I’ll also add that as a parent with a child on the spectrum you also rarely get the validation you need because the child “looks normal”. Meanwhile, you’re the one battling with it every single day.

amother

Indigo

Thu, Feb 01 2024, 7:55 pm

amother Royalblue wrote:

All very true points!
But PSA, a CHILD with down syndrome, not a down syndrome. They are a child first like any other, they just happen to have a diagnosis.