What do you wish you’d known?

amother

Wheat

Mon, May 27 2019, 12:34 am

Its not me, It's not a reflection of me.

I am doing everything In my power to help this child.

I don't know the end result of a decision but my intentions were purely for my child's wellbeing.

it's easier to love this child unconditionally more than my "conventional" children.
There are days I doubt myself, but thats okay, because tomorrow I'll feel like the the luckiest mom alive.

Surrendered

Mon, May 27 2019, 1:01 am

Though he/she is wrapped in a different color wrapping paper, they are still a GIFT!!!

I wish I had known that they bring such Nachas, Brocha and Happiness into the home. I would've appreciated my precious gift much more.
Also, reach out to organizations for support. There really are alot of help and support for special parents, it gives you the opportunity to network and meet other special parents.
It's crucial at the beginning. Please accept as much help as possible.
Though you might not feel a need for it, You should let yourself be helped, you will be able to handle your new bundle of joy better.

Please treat yourself often. You deserve it. Self care is the key to being a good mommy, especially to special children.
I've got several children with special needs. I learned the ART of accepting help graciously and I am bh doing great.

Do what you feel is right and "Don't listen to peoples negative and many times silly comments." People sometimes say stupid stuff, don't let it hurt you. Let it get out from your second ear...
I find them comical and laugh it off...

May you see loads of Yiddish Nachas from your new little addition.

If your baby has DS, there's a beautiful welcome package for the mother.

Last edited by Surrendered on Mon, May 27 2019, 9:07 am; edited 2 times in total

imorethanamother

Mon, May 27 2019, 1:30 am

amother [ OP ] wrote:

If you have a child with special needs, what do you wish you’d known back when you first found out? I’m at the beginning and it’s a little overwhelming. I want to learn from mothers who’ve BTDT. Thanks.

Depends on the special needs. If you're talking about autism, there are things I wish I would have known, like not to waste my time on Floortime and dietary stuff, and simply put in more ABA.

Is that what you mean?

amother

Beige

Mon, May 27 2019, 1:43 am

That I would find so many more accepting, supportive people than I had assumed (my child has ASD of the more subtle type)

ETA I know many people do not have this experience. I'm just sharing what I experienced. I know I'm lucky. I hope others are able to have the same especially as awareness is growing.

Sunny Days

Mon, May 27 2019, 2:02 am

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.

So true.
Also, you’re the mother- you get to choose doctors, treatment modalities etc & DON’T be guilt tripped by other well meaning people- including your own parents.
Of course you can take advice, but trust your gut & be an advocate for yourself and your child.
Be respectful- but advocate, advocate, advocate!

Sunny Days

Mon, May 27 2019, 2:10 am

Another very important piece is networking and research. It helps so much to find others dealing with same/similar diagnosis.
I’ve learnt so much from others in regards to different equipment available that the Dr/therapist didn’t know to offer. I’ve learnt about different genetic components related to what we’re dealing with and educated our doctors on it and more.

creditcards

Mon, May 27 2019, 3:12 am

gamzehyaavor wrote:

Yes, I totally agree. I had quite a few people fight me along the way when they believed I was doing the wrong thing with my kid. With diets and therapists or school, or alternative medicine...

aricelli

Mon, May 27 2019, 7:21 am

imorethanamother 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.

amother

Mon, May 27 2019, 7:38 am

aricelli wrote:

I’m very worried about the siblings. How can I make sure they’re okay and don’t feel neglected? This is going to be a long road for all of us. I don’t want anyone to feel pushed aside. Also, how can I handle the double standard in rules that will come up when my special needs child doesn’t understand or can’t follow the rules I set for my other kids? I obviously don’t want to stigmatize my special needs child to the siblings.

aricelli

Mon, May 27 2019, 7:49 am

I’m at the stage right now where its time to “stigmatize” my special needs child. I resisted until now but I think my teenage children are having a lot of resentment towards this-child-whos-normal-but-acts-so-weird. I’m doing so much for my little son I was forgetting that my “regular” children have needs too. They resent it and I want them to better understand him

aricelli

Mon, May 27 2019, 7:59 am

My big ones were resenting the chaos at our seudah. We recently started a deal with my children: the first part of the suedah is quiet and “normal” and later on my little one can “do his thing”(he’s bh at the stage where we can try this) he can strum his guitar to the zemiros, stand on his head, I can partner him in his yoga, he can strip to his undies: you get the picture! At that point, if it gets to be too much for my teenage son its ok for him to quietly leave the table and take a break by sitting on the porch. I learnt to relax my rules all around. I learnt that they were all so happy to feel understood and validated.

amother

Mon, May 27 2019, 8:06 am

My kids are all little. I’m mostly worried about the kind of rules like cleaning up and no hitting. Obviously no one should ever hit. But what do you do when a special needs child is sometimes aggressive and just plain doesn’t understand? We are of course working with him, but it’s not going too well yet. My other concern which is very scary to me, is what can I do about my other kids to make sure they don’t feel like all the attention is on the special needs child, especially when we have various therapists and whomever else coming to the house and lots of appointments outside the house? One child is already acting up in a “neglected” kind of way. I don’t know how to help her, other than try my hardest to give her one on one time, but it seems like it’s never enough and I worry this situation is hurting her despite my best efforts. She is much too little to understand what’s going on.

amother

Smokey

Mon, May 27 2019, 8:15 am

Although I am rubbish at not worrying about the future, I try very hard and am now quite good about not worrying about the past. You can't change it.

Actually writing this just gave me a kind of epiphany - you can't change the future either really.

Most important thing to know - G-d gave you this kid because He in His Infinite Wisdom knew that being involved in raising this child with all that it entails was the absolute best way for your neshama to reach it's maximum potential. To have dveykus. To give kavod shamayim. To raise yourself to be the best possible person that you can be,

EMBRACE It!!!!!

(note to self - come back and read this one. Failure to embrace thungs the way they are is the greatest aveira really. Get off the idea that you know more than G-d).

amother

Dodgerblue

Mon, May 27 2019, 8:27 am

amother [ OP ] wrote:

I think you need to explain it to them. With my sn its pretty obvious but we still discuss it. Be open with your kids that your sn kids brain works different and has a harder time than regular kids to understand and do things and you are trying your best that her should grow up as normal as possible.

What works for us is lots of family outings to the zoo park ect...Also if possible to make the other children involved in the special needs child care/program games with adult interference of course.

Regarding therapy, you have to be your childs advocate and make sure your not wasting your time in therapy with bad therapists *there are many). Sometimes giving the child love, attention and a normal schedule is more important than having therapists and specialists come over all day.

ectomorph

Mon, May 27 2019, 9:00 am

amother [ Dodgerblue ] wrote:

Every thing she said!!

Surrendered

Mon, May 27 2019, 9:04 am

In the beginning after the special child was born, we had someone speak to the older kids and tell them how to take the situation without being embarrassed and that they are especially chosen by Hashem to have such a special sibling because they are special.

The typical children get lots of extra attention and outings through sibshops from organizations.