What do you wish you’d known?

amother

Seafoam

Mon, May 27 2019, 12:53 pm

creditcards wrote:

I'm happy that I did not know how special needs my child will be, otherwise I don't know how I would handle it. I found out slowly all the challenges that come with my special needs child and got used to it one by one. Just think about today.

Same. If I would have known what my life was going to turn into , I would’ve fallen apart. Things have happened gradually which really helped.

Yummymummy3

Mon, May 27 2019, 6:42 pm

I wish I'd have known that I'm good enough. If Hashem gave me this challenge then I can deal with it.
I wish I had done as you are doing, reaching out and learning from others.
I wish you hatzlocha.

amother

Brown

Mon, May 27 2019, 11:38 pm

aricelli wrote:

And I wish I didnt feel shame about having a child in therapy and started my floortime even earlier!
I wish I would have known: theres no one size fits all: chart your own course.

I wish I had heard Rick Lavoies seminar on special needs children earlier to better understand the stages of grieving and that its normal and ok to fall back to denial or anger even after I’ve reached acceptance. And that its normal for my husband and I to be at different place of this at different times. And that its hard to accept because he was so “normal” at first and we had such dreams starting out.

I wish I would have been more aware as to how this was effecting his siblings and started speaking to them about this earlier...started having some more special family time without him.

Can I pry? how old is your sn child now? ours is the oldest so the younger ones always grew up with him around but it definitely made for chaotic upbringing. Now that he's older and we have family time without him, as guilty as I feel about it, it's really really nice for everyone.

aricelli

Mon, May 27 2019, 11:44 pm

amother [ Brown ] wrote:

My little guys almost seven.
How do you have fam time without him? Is he not home?

amother

Orchid

Tue, May 28 2019, 1:12 am

Op, something I swish I would’ve known & was upset I found out only months later was about SSI. I was upset NICU SW never mentioned it (disability was apparent at birth) and then we kind of had to navigate it on our own.
Don’t know where you live, and if this can apply to you, but wanted to put it out there in case.

amother

Brown

Tue, May 28 2019, 2:25 am

aricelli wrote:

My little guys almost seven.
How do you have fam time without him? Is he not home?

he is very high functioning, enough that he is in yeshiva BH. not without issue, but it gives our family some breathing room. I think letting the kids know about the issues make sense if yours is the youngest. for us it was not so simple since he was the oldest. they all know he can't/doesn't behave a lot but it wasn't like we advertised or discussed a diagnosis and issues with them.

But some of these therapies or organizations (depending on where you live) can help out during the evenings and give you a break then to spend time with the rest of the family.

aricelli

Tue, May 28 2019, 6:59 am

amother [ Brown ] wrote:

Lol- so my situations the reverse: bh my teenage boys dont come home until late- when my sn son is asleep!
Bh with his therapy evenings have gotten better. Shabbos seudahs are still dysregulating but we’ll get there!

amother

Ruby

Thu, May 30 2019, 12:15 pm

I wish I would have been prepared for the intensity of grieving the loss of a typically developing child. And yes, I know that poem about going to Holland and its wonderful, but still.

Because at first I was all like I am this kid's champion! and I'm so accepting! and so on. And all the therapies and all the support that I do, and incorporate all the suggestions, and look into all the resources, and get the other kids on board and make it into a game and a family project..

And then I was blindsided by the level of grief that would come out of nowhere. Like at meetings and discussions with the therapists, I would be so cerebral about it all. And then suddenly at home, like in the middle of doing something so mundane like a load of laundry, this thought would just scream into my mind like I DONT WANT A CHILD LIKE THIS. And the intensity was like a tornado ripping my brain and heart out of me. And, of course, I want my child. I just want my child to be typical!

I learned that its OK. That these thoughts come and will continue to come as our journey unfolds. And that it hurts. And I can acknowledge that.