Do you consider your autistic child special needs ?

amother

Forestgreen

Fri, Feb 02 2024, 7:52 am

amother Steelblue wrote:

Can you please elaborate on this? What resources are available?

I have an HFA child and we are planning to move to NY. Are there more resources available for NYC residents versus elsewhere in NY?

Idk what NY that lady lives in but I get nothing here. Dependent on chesed completely

amother

Hawthorn

Fri, Feb 02 2024, 7:58 am

yachnabobba wrote:

We should be friends. Mine is high ability, high manipulation low function

I’ll join the party. Your describing my very special son to the tee.

Last edited by amother on Sun, Feb 04 2024, 3:57 am; edited 1 time in total

amother

Quince

Fri, Feb 02 2024, 7:59 am

amother Vermilion wrote:

Didn't read through this.

To me, one reason it's hard to call my DD "special needs" is because it's invisible. And because she herself would hate that label.

Would you like to be called that? How would it make you feel? I don't blame her....

amother

Valerian

Fri, Feb 02 2024, 8:28 am

amother Forestgreen wrote:

Well lucky you . Mine is so difficult I resent so bitterly when I hear about ppl diagnosing their spouses with autism . My child is hard to place within a special school, I can’t get him into camp. He is so far from marriage material it’s not even funny. So realize that gawky and socially awkward is one end, mine is at the other end

Firstly I’m sorry if my comment hurt you in any way. My intention was definitely not to do that so I apologize.
My child is really young (toddler) right now and is bh a beautiful kid. I don’t like to talk about his difficulties often but I can tell you that they are definitely very present and constant in our life.
Right now he is our only kid and we bh can spend all our time money and energy investing in his future.
We don’t know what the future will bring and while I hope he can end up mainstreaming down the line and “marriageable” at the right age I also know that it might not be in the cards for us and we will make sure to give him what he needs to he can have the best life for him

LovesHashem

Fri, Feb 02 2024, 8:37 am

amother Cyan wrote:

Is there a preferable term to replace special needs?

Autistic. Neurodiverse. ADHD. Whatever their diagnosis is.

I'd use special needs for those cognitively impaired to the point they really don't understand what you are saying about them.

amother

Quince

Fri, Feb 02 2024, 8:44 am

amother Indigo wrote:

No matter how essential a person feels it is to their identity, would you refer to someone as an autism or an autistic person. They are not a down syndrome - that is a diagnosis. They are a person. With down syndrome, person first is what is usually preferred.
Yes, I am part of both worlds. It matters and makes a big difference!

It's literally in every part of my brain and how I process, understand, and perceive the world. My brain being wired differently means I think differently, react differently, come up with different ideas, communicate differently.

Autism doesn’t worsen, nor does it clear up. It is also not mild or severe. Autism isn’t something you have, like a bruise or an illness, it is part and parcel of my entire build. So I am autistic, I don't have autism. I know some people prefer other verbiage but it is easier to understand this way.

It is a spectrum disorder. We all have our profiles, just like non-autistics do, including our strengths and weaknesses, skills and sensitivities and so on. The point is that autistics differ wildly in how their profiles are set up.

giftedmom

Fri, Feb 02 2024, 8:47 am

amother Quince wrote:

Ofcourse it can be mild or severe

amother

Quince

Fri, Feb 02 2024, 8:56 am

giftedmom wrote:

Ofcourse it can be mild or severe

It's a spectrum. Its technically in levels but there's so many parts and traits. I might be "mild" in one but "severe" in another. Every person is so individual and different.

amother

Indigo

Fri, Feb 02 2024, 8:57 am

amother Vermilion wrote:

Didn't read through this.

To me, one reason it's hard to call my DD "special needs" is because it's invisible. And because she herself would hate that label.

Yes, it's hard. And also because as much as it may feel that way at times and we want the world to be understanding and accomodating, we also don't want the world interacting with them and viewing them through the lens of special needs

life is fun

Fri, Feb 02 2024, 9:06 am

amother Quince wrote:

It's a spectrum. Its technically in levels but there's so many parts and traits. I might be "mild" in one but "severe" in another. Every person is so individual and different.

Call it high functioning or not high functioning...

amother

Vermilion

Fri, Feb 02 2024, 9:12 am

LovesHashem wrote:

Autistic. Neurodiverse. ADHD. Whatever their diagnosis is.

I'd use special needs for those cognitively impaired to the point they really don't understand what you are saying about them.

It's a good question, when to say "neurodiverse" and When to say "special needs"

Im thinking...

Neurodiverse is high functioning autism, ADHD, maybe some mental health conditions like OCD

And I would use special needs for anyone with a very noticeable or concrete disability. But it doesn't have to be cognitive. Like blindness, or wheelchair bound, non verbal autism...

amother

Steel

Fri, Feb 02 2024, 9:17 am

I may get hate for this but I consider my 8 year old with ADHD to be special needs because she does have different needs. There is no use in denying that, in fact it does more harm than good to deny the fact that some kids are higher support needs than others, regardless of their diagnosis.
Edited to add: I have never called her special needs, I feel that the term is degrading, I do realize that she has different needs than typical kids, thats what I am trying to say.

amother

Steel

Fri, Feb 02 2024, 9:20 am

amother Indigo wrote:

Yes, it's hard. And also because as much as it may feel that way at times and we want the world to be understanding and accommodating, we also don't want the world interacting with them and viewing them through the lens of special needs

It would be very hurtful to call any child special needs in front of them if they have the cognitive functioning to understand the term. I have had people tell me that when my daughter does certain things it makes her appear special needs and it bothers me so much because hello, she has different needs, stop caring so much about how she appears! I will never understand that attitude, why do you care what my child appears is? Why do you feel the need to make her appear as typical as you feel she should?
**Rant Over**

amother

Bergamot

Fri, Feb 02 2024, 9:40 am

yachnabobba wrote:

We should be friends. Mine is high ability, high manipulation low function

my child:) great way to break down hfa, I have a hard time explaining to myself even how my officially "high functioning" doesnt function too well- well put!
wish we can all hookup in irl.

amother

Snowflake

Fri, Feb 02 2024, 9:46 am

amother Forestgreen wrote:

Idk what NY that lady lives in but I get nothing here. Dependent on chesed completely

Go to an organization like hamaspik
You can sometimes get just your child with autism on Medicaid.
They can help you. Then you get so many resources like many opwdd services and whatever hours remain you can try for cdpap

amother

Vermilion

Fri, Feb 02 2024, 9:52 am

amother Steel wrote:

This is where people like to use the term "high needs"

amother

Burntblack

Fri, Feb 02 2024, 9:53 am

I also grapple with this. My son has HFA & HDHD. He is mainstreamed and although he probably appears to others as somewhat awkward most people would not think he has "special Needs".
There's an organization that always sends me invites to their mom's night out. As much as I want the support, I never go. I feel like it's not right of me to go. It's probably meant for the parents of kids with more needs.