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Forum
-> Parenting our children
-> Our Challenging Children (gifted, ADHD, sensitive, defiant)
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amother
Snowflake
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 Thu, Feb 01 2024, 8:17 pm
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Do you live in NY? There is so much out there for your child in terms of resources
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Violet123
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Thu, Feb 01 2024, 8:21 pm
I think I can write a book on this topic
But till that gets written I have a few suggestions for those younger, starting the journey
1. Be your child's advocate
Noone will care for your child as you do.
Many people are here to help but ultimately, it's your journey, your family's journey and this child's journey
2. Take all the help you can get
It's not easy. I know. I was in denial for a long time
These years fly by. We can't turn the clock back so do what you can for the child when they're young
3. People will say dumb things. They are not with you daily. They do not see what you deal with.
Don't worry about being judged.
As long as youre doing the right thing.
4. There's alot of support and people who have been on the journey before.
Learn from them.
5. Don't just accept everything people say. They may try to help but you know your situation best
I don't care if its a therapist, teacher, principal. Etc
6. This is very very important:
YOUR OTHER KIDS NEED YOU TOO
Don't neglect them emotionally
Even when you think they're doing "fine"
I have 2 "special needs" kids (hate that term)
Both different situations
Both are very high functioning BH
I call it the middle class
Not "regular" enough to be in a mainstream school
And don't "look" different
There are many challenges along the way
Anyone can Contact me
I can teach you what I wish I knew long ago
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yachnabobba
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Thu, Feb 01 2024, 8:42 pm
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Mine is super special. He is gorgeous, clever, sings, has tons of personality but oh my he is getting more and more special as the days go by
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amother
Bergamot
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Thu, Feb 01 2024, 9:00 pm
| Violet123 wrote: | I think I can write a book on this topic
But till that gets written I have a few suggestions for those younger, starting the journey
1. Be your child's advocate
Noone will care for your child as you do.
Many people are here to help but ultimately, it's your journey, your family's journey and this child's journey
2. Take all the help you can get
It's not easy. I know. I was in denial for a long time
These years fly by. We can't turn the clock back so do what you can for the child when they're young
3. People will say dumb things. They are not with you daily. They do not see what you deal with.
Don't worry about being judged.
As long as youre doing the right thing.
4. There's alot of support and people who have been on the journey before.
Learn from them.
5. Don't just accept everything people say. They may try to help but you know your situation best
I don't care if its a therapist, teacher, principal. Etc
6. This is very very important:
YOUR OTHER KIDS NEED YOU TOO
Don't neglect them emotionally
Even when you think they're doing "fine"
I have 2 "special needs" kids (hate that term)
Both different situations
Both are very high functioning BH
I call it the middle class
Not "regular" enough to be in a mainstream school
And don't "look" different
There are many challenges along the way
Anyone can Contact me
I can teach you what I wish I knew long ago |
I love this post!
take all the help you can get- I always wonder about that. the help being offered by volunteer organizations clearly labels my kid as"special needs". I know my child qualifies and boy do I need it, however like posters said earlier it's a "hidden disability" with lots of judgement. if people wld know that my kid has asd I'm taking away opportunities from my child as neighbors will look at her weird. she's only 5 and issues aren't so obvious, they can be written off as shy, little kid quirkiness, bratty ect.
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amother
Cyan
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Thu, Feb 01 2024, 9:04 pm
| amother Royalblue wrote: | 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 |
Trying to say this tactfully but 9/10 it’s obvious when a child has ASD. Even HFA.
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amother
Bergamot
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Thu, Feb 01 2024, 9:07 pm
| amother Cyan wrote: | | Trying to say this tactfully but 9/10 it’s obvious when a child has ASD. Even HFA. |
unless you know asd first hand, I respectfully disagree. people dont know what they are looking at. more typical is thinking parents are "mishandling" their kid than the kid actually has serious issues, or that the child is just quirky
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Violet123
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Thu, Feb 01 2024, 9:13 pm
One of my kids is on the spectrum
HFA
I call it aspergers even though it's not an official term used anymore
Autism is a huge spectrum
The other child is medically related
(brain, so affects more)
Regarding the help you're referring to, I really understand what you're saying.
Why label your child if you don't have to?
1. People notice. It may seem to them that the child is just spoiled or confrontational.
Unless it's a wrong diagnosis.
2. Protect your childs privacy as much as possible or necessary but when they're young it's different than when the child gets older(in my opinion)
3. Getting help is much more accepted these days
4. Ultimately, it's your child, your family and your life!!!
Each situation is different but once again. If you need someone to talk to you can contact me
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amother
Taupe
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Thu, Feb 01 2024, 9:34 pm
| yachnabobba wrote: | | Mine is super special. He is gorgeous, clever, sings, has tons of personality but oh my he is getting more and more special as the days go by |
Are you describing my son?!
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amother
Cerulean
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Thu, Feb 01 2024, 9:46 pm
| amother Cyan wrote: | | Trying to say this tactfully but 9/10 it’s obvious when a child has ASD. Even HFA. |
Not always. It's a huge spectrum... my kid is 2E so people think quirky. Almost 8. And zero help because too High functioning.
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amother
Valerian
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Thu, Feb 01 2024, 9:51 pm
The only people who noticed that my child is autistic are either people who work with children on the spectrum or have one of their own.
I actually appreciate it since I’ve had some nice interactions with strangers who are in the same boat and it helped me feel less alone in the world
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amother
Bergamot
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Thu, Feb 01 2024, 9:55 pm
| amother Valerian wrote: | The only people who noticed that my child is autistic are either people who work with children on the spectrum or have one of their own.
I actually appreciate it since I’ve had some nice interactions with strangers who are in the same boat and it helped me feel less alone in the world |
same!!
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LovesHashem
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Thu, Feb 01 2024, 11:35 pm
| amother Indigo 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. |
Not everyone agrees with this. Some people feel down syndrome or autism is a huge part of themselves and don't just happen to have the label. Without said label they wouldn't be the same person at all.
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TwinsMommy
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Thu, Feb 01 2024, 11:41 pm
huh. I thought it was MINE! 
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amother
Indigo
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Thu, Feb 01 2024, 11:43 pm
| LovesHashem wrote: | | Not everyone agrees with this. Some people feel down syndrome or autism is a huge part of themselves and don't just happen to have the label. Without said label they wouldn't be the same person at all. |
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!
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LovesHashem
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Thu, Feb 01 2024, 11:50 pm
| 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! |
Just as I am a Jewish person, not a person with Jewishness I definitely feel like an autistic person. This is what most of the online autistic community prefers currently.
It's rude to call anyone as an autism just like it's rude to call someone "hey you jew" or "hey you white".
I understand not everyone feels like this as you may feel differently so I don't think we should push either type as what people should do since there is disagreement.
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amother
Steelblue
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Fri, Feb 02 2024, 12:04 am
| amother Snowflake wrote: | | Do you live in NY? There is so much out there for your child in terms of resources |
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?
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amother
Watermelon
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Fri, Feb 02 2024, 2:24 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? |
Yes, NYC has the most services available.
Schooling options- easier with BOE reimbursement
OPWDD- more generous in NYC
CDPAP- more generous in NYC
I think the amount of after school programs/respite options are better too, but I think getting respite workers is hard all over.
Also, I say this as a medical mom, so not sure how involved these organizations are with kids with special needs but no medical needs- when we moved away from NYC to upstate, we lost out on A LOT of help.
The downside is that housing/space is generally much harder…
Good luck with the move!
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amother
Royalblue
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Fri, Feb 02 2024, 2:32 am
| amother Indigo 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. |
Yes, def agree, it's an oversight
Should have defenetly said, a child with down syndrome or any other more visible condition or disability
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yachnabobba
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Fri, Feb 02 2024, 7:20 am
We should be friends. Mine is high ability, high manipulation low function
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amother
Forestgreen
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Fri, Feb 02 2024, 7:42 am
| amother Valerian wrote: | The only people who noticed that my child is autistic are either people who work with children on the spectrum or have one of their own.
I actually appreciate it since I’ve had some nice interactions with strangers who are in the same boat and it helped me feel less alone in the world |
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
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