I've got several children with special needs. AMA

amother

Sienna

Sat, Mar 13 2021, 10:11 pm

amother [ Wine ] wrote:

Hi, fellow SN mom!

I have a SN son who has no specific diagnosis ever made, but at 14 he is learning at maybe a 3rd grade level and cannot manage a lot of self care. I worry so much for his future. Will he ever be ever to take care of himself? Let alone have a family of his own? I wonder if I will be taking care of him into my old age. And what will happen when I’m gone. We are not wealthy. Don’t know what kind of trust I could set up. Don’t want him to ever be a ward of the state. I haven’t really had a serious discussion about this with a lawyer or social worker or... who? Don’t even know. My husband had his head in the sand. Thinks I’m being negative when I bring this up and I need to have more trust that everything will be fine. 🤦‍♀️
What do I do????

I'm not the OP, but you can look into getting a diagnosis such as PDD-NOS and then you can access services from OPWDD. There are organizations such as Hamaspik that have a ton of knowledge and programs (related to opwdd) that would help you plan for the short-term and long-term.

amother

Sat, Mar 13 2021, 10:26 pm

I must add that sometimes medication is not affective long term. Sometimes you need to change after a while. Its not like, we found the right medication and dosage and were good to go for the next few years.
The child needs to be followed closely, it might need to be changed after a while.
For two of my children We went from Ritalin, Adderall, concerta, Vyvanse, stretatta, Focalin. In addition to Guanfacine, Intunive.
It was alot of try and fail, try and fail, but never fail to try. Because of there's a will there's a way.
So believe me, it wasn't an easy journey until we got here and it's not over yet.
I'm still waiting for the day that we can discharge them from taking any meds, as our older son did.
At the moment, before their medications kick in to their system in the morning, and when it becomes ineffective in the evening, they are completely out of control. You cannot rationalize with them. They are not "here".... it also takes between 1/2-hour for the meds to activate.
Children who have ADHD, their brain is wired differently than a typical person. They dont have to be crazy for that. My children are very average and typical kids in a regular mainstream class when they take their meds. As a matter of fact, they are considered to be "top of their class" by their teachers/Rebbi's.
But Oh my my, uch and very to the teachers and classmates if they forgot to take it. You don't want to know them.

amother

Sat, Mar 13 2021, 10:30 pm

amother [ Sienna ] wrote:

I'm not the OP, but you can look into getting a diagnosis such as PDD-NOS and then you can access services from OPWDD. There are organizations (such as Hamaspik) that have a ton of knowledge and programs (related to opwdd) that would help you plan for the short-term and long-term.

This information is true. There's another program, for children who won't qualify for OPWDD. Its called HCBS. This is for children who are more typical (not an official disability), just ADHD and such.
HCBS offers hours for Respite, Comhab and Family Support Services. As well as a Care coordinator to help out with information and research you need.

amother

Green

Sat, Mar 13 2021, 10:33 pm

amother [ Saddlebrown ] wrote:

Who diagnosed your asd child? Is he on medication? How is he learning skills that asd children lack? I’ve been through so much with my dc and even went to a highly recommended neuropsychologist. Yet, he remains undiagnosed and struggles greatly with rigidity, self regulation, sensory overload and social skills. He’s also extremely sensitive and can’t seem to get past it when he feels someone violated him. He’s in therapy for 2 years and has become more self aware but not much else changed. Therapist claims he’s unique (my child) and is not responding to therapy in a conventional way. Any pearls of wisdom here? Thanks in advance!!!

This is my son!!!! Are you me? No diagnosis, same symptoms, and OT, Speech, and Behavioral therapies don't help much...yes to feeling violated by the tiniest things (like a sibling brushing past in the hallway or speaking too loudly) and retaliating aggressively! Is your son constantly hitting his siblings and telling you he hates you and wants to hurt you? I am so sad and desperate for help...

amother

Green

Sat, Mar 13 2021, 10:35 pm

amother [ OP ] wrote:

This information is true. There's another program that Hamaspik offers, for children who won't qualify for OPWDD. Its called Comfort Health. This is for children who are more typical (not an official disability), just ADHD and such.
Comfort Health offers hours for Respite, Comhab and Family Support Services. As well as a Care coordinator to help out with any information and research you need.

Please expound on Comfort Health...what is Respite and Comhab? What do the Family Support Services offer? Ty!

I just googled and see what they offer...is it for NY based families only, or will they help people in smaller TriState communities?

amother

Cerise

Sat, Mar 13 2021, 11:22 pm

amother [ Saddlebrown ] wrote:

Look into pandas/pans

amother

Pearl

Sat, Mar 13 2021, 11:23 pm

amother [ Sienna ] wrote:

Thus is what happened to my son took til he was 13years to dignose

amother

Wine

Sun, Mar 14 2021, 12:00 am

amother [ Sienna ] wrote:

Thank you for responding.

What does PPD-NOS mean? What is OPWDD? Not familiar with Hamaspik either. I live OOT. I know people in NY get lots of services that aren't available in my state.

We get DS evaluated every few years but no diagnosis has ever been made. They always say something along the lines of, "he's just slow." It's kind of frustrating because as much as kids are so much more than the labels we put on them, sometimes those labels really help in getting on the right path, getting the right services, finding help, etc.

amother

Apricot

Sun, Mar 14 2021, 12:01 am

amother [ Green ] wrote:

OPWDD is NY based. Things differ my state and ny offers significantly more funding towards respite services than others. I'm in nj and you can't compare what is available

amother

Pearl

Sun, Mar 14 2021, 12:03 am

amother [ Wine ] wrote:

It means he's on the autism spectrum but full dignoses if you get this written on your papers you will hopefully get more services I no in Israel you can that's what my son has

amother

Sun, Mar 14 2021, 12:34 am

amother [ Green ] wrote:

This! Is how my 10 and 12 year old kids are Without taking their meds. Any slight wrong move you make that doesn't comply with them, stay far far away from them, They can react dangerously.

amother

Sun, Mar 14 2021, 12:41 am

amother [ Aubergine ] wrote:

Bigsis
I actually identify with you post 1000% and it’s interesting that it triggered the op. Maybe she does regret having so many and if had a crystal ball would’ve stopped. I have four kids with four diagnoses - all my kids take meds and we have a lot of stuff going on here on a daily basis that another family would go out of their minds. I would absolutely love to have more kids but feel like it would be selfish to add more to this wonderful mix of very energetic adhd/add/odd/ocd/and more kids!
I don’t know if it’s a lack of bitachon or simply realistic that these are our genetics and why would I have more when I feel like I cannot handle more.

You need to think logical. Do you think you can handle more children in addition to what you're currently going through?
We stopped for the moment because I believe its the right thing according to the current situation. As much as I'd like to have more, I need to consider other people around me.

amother

Sienna

Sun, Mar 14 2021, 9:07 pm

amother [ Wine ] wrote:

Pervasive Developmental Disorder - Not Otherwise Specified. "The diagnosis of a pervasive developmental disorder not otherwise specified is given to individuals with difficulties in the areas of social interaction, communication, and/or stereotypic behavior patterns or interests, but who do not meet the full DSM-4 criteria for autism or another PDD" (wikipedia).

I know ppl who moved to NY specifically for this reason - to qualify for an array of services for their child. Although it's possible there may be help in your state that you're not aware of.

OPWDD: Office for People with Developmental Disabilities.

amother

Teal

Sun, Mar 14 2021, 9:13 pm

amother [ Sienna ] wrote:

PDD is not in the DSM5 and anyone with PDD is not considered to have ASD.

amother

Saddlebrown

Sun, Mar 14 2021, 9:38 pm

amother [ OP ] wrote:

This! Is how my 10 and 12 year old kids are Without taking their meds. Any slight wrong move you make that doesn't comply with them, stay far far away from them, They can react dangerously.

Are they taking meds for adhd? It’s so hard to get to the root of the issue sometimes!!

amother

Daisy

Tue, Jun 22 2021, 10:35 pm

I saw on this thread mention of OPWDD- in addition to other services I know several schools in Monsey will accept OPWDD funding to cover some of the school tuition- programs like Yesodos (elementary girls) and Tiferes (high school girls)- they build their program in a way that they can legally bill OPWDD for some of the hours taking some of the tuition burden off the parents.
hope this helps someone

amother

Wed, Jun 23 2021, 9:02 am

amother [ Wine ] wrote:

I believe this post wasn't addressed and can benefit many people, in all kinds of situations and challenges in life.
She mentions that she worries alot about the future and this is causing her so much stress.
Who knows what will be, how will I manage...

With everything in life:
Best tip: "Take Minute by Minute".
Don't think about the future. No one knows what the future will bring. It won't help you in any way to worry.
Worry is just causing stress, but doesn't solve any issues.
If you live in the moment, you will be able to handle whatever Hashem sends your way.