I've got several children with special needs. AMA

creditcards

Mon, Oct 11 2021, 12:45 am

amother [ Mint ] wrote:

I'm terrified of having a cognitively SN child. I feel like I wouldn't be a good parent for such a person. I pray every pregnancy that it won't happen.

Do you have any idea how I could conquer my fear and be more accepting and loving?

(Yes, I volunteered when I single. Yes, I gave it my all, and had many good connections with my students. But I still can't imagine having a child with cognitive challenges. I think I would be impatient and disappointed. What do I do to get over this??)

I had the same fear until I had my special needs child. In pregnancy I thought that I will give her away. After she was born I fell in love with her and wanted to keep her. She is precious! I thought I would never want a special needs child. It's the worst thing that can possibly happen. But once you have it, it's not so terrible as it sounded. I wouldn't ask for another one but she adds a lot of spice to my life. I think you shouldn't be so worried. Most people with special needs kids never thought they would be able to handle it but it looks different when you are in it.

Kiwi13

Mon, Oct 11 2021, 1:08 am

Fellow special needs mom here, asking because it seems you’re further along in the process and I’m still trying to sort through this in particular:

Does your child with ASD have cognitive delays/disabilities? How did you tease out what’s lacking/delayed (cognitive abilities) from what’s locked in by his autism? At what age did it become clear what his cognitive abilities were?

Kiwi13

Mon, Oct 11 2021, 1:20 am

amother [ Mint ] wrote:

Not OP, but I relate to this post a lot. Before I had my SN son, I thought similarly. In particular, autism was my worst fear as a parent (aside from medical stuff). Before every anatomy scan I told my husband I could accept a Down syndrome diagnosis easier than autism (obviously you can’t know that from the scan, but my point was how scared I was of autism).

But then when my son was born, and granted he wasn’t diagnosed with ASD until toddlerhood and didn’t show objective signs of delay until 3-4 months, I instinctively knew he was different, and it felt like something beautiful. (I was terrified also, don’t get me wrong, and I was harping on it with the doctors nonstop until we got answers.) Even from the very beginning and all the way to now, when I look at him, I don’t see autism. I see my son. I can’t picture him any other way, and I don’t want to. I’m in it to help him be his best self and all that sounds-cheesy-but-I-totally-mean-it stuff.

I don’t know if this helps, but the short of it is, when special needs were an abstract idea they were much more terrifying than when it was my child. My biggest fear with autism was about how I could possibly connect with a child on such a different wavelength. Side point: that wavelength is pure Emes. Seeing the world through his eyes is like seeing the world all over again for the first time. The “different operating systems” mashal is spot on.

amother

Mon, Oct 11 2021, 2:24 pm

Kiwi13 wrote:

Hi, I have lots of information to share with you regarding those questions. I'd rather discuss it with you in detail via email. Youre welcome to connect with me at specialneedschildrenama@gmail.com.
Be in touch

amother

Mon, Oct 11 2021, 2:30 pm

creditcards wrote:

I'm so "not the type" to have children with special needs and could never accept it before I was granted those special gifts, who are precious and wrapped in different color wrapping papers.
Once I received those gifts, I came to appreciate them over the years.
No need to stress over it before you are zoche to raise them. You might not be chosen for this gift.

If Hashem brings you 'To' it, HE will bring you 'Through' it. (This goes with any challenge Hashem sends your way).

I believe I just gave myself away with answering with quotes I always use.

amother

Mon, Oct 11 2021, 5:30 pm

amother [ Papaya ] wrote:

How was your relationship with the ADHD child before he/she started taking medication?

Oh my, this is a very loaded question that takes much of my energy to answer.
Before they took medication (before I agreed to go that route, and tried every other alternative out there)
my relationship with my kids were extremely strained. I felt like the worst mother and got worked up with my kids whenever they misbehaved or got into trouble, which was often.
To be honest, Its still difficult every morning before it kicks in and evening when the meds wear off.
it's a big struggle. It's difficult to explain, only a mother who has an unmedicated child (or wrong dosage of medication) can understand the true challenge of this.

amother

Mon, Oct 11 2021, 5:36 pm

amother [ Ecru ] wrote:

Did you wished your children were different did you wished they never been born?
Did you wished they were normal and so you never got any criticism? Do you think you love your children less then children who are “normal?”

They are so sweet Kah, I Love them just the way they are.
Down syndrome is delicious and adds lots of yummy spice to our life. He is pure sunshine kah.
Medical child is just a challenge medically but precious cute kah.
ADHD and ASD are Yummy, as long as the medication is working.
oh and they are all very 'normal', in their own way.

BTW, Who is the prime example of NORMAL? whom do I look up to, who is the NORMAL person in this world whom they/we need to emulate???

answer: just look into the mirror!

daagahminayin

Mon, Oct 11 2021, 5:48 pm

Kiwi13 wrote:

Beautiful post. I was scared of having a child with special needs even though at the back of my mind I think I thought it would happen. And then my baby with Down Syndrome was born. She is the sweetest, most precious… oh I can’t even describe it. She’s gifted in love.

Kiwi, I love how you describe autism as being on a wavelength of pure emes. That’s awesome.

And OP, you are a very special person for making yourself available to help other mothers of special needs children.

amother

Nemesia

Mon, Oct 11 2021, 6:07 pm

Op thanks for sharing your insights! Very valuable info and so full of Chizuk!

Just chiming in that I’m a mom of a medically involved kiddo, and happy to help navigate the roller coaster of having a child that’s technologically dependent/adorned with medical apparatus and how to advocate and fight for your child’s care.

Eta, I don’t want to hijack this thread so if anyone needs advice/info on the medical realm of things please lmk so we can connect.

amother

Papaya

Mon, Oct 11 2021, 7:25 pm

OP , I appreciate you answering my question 💜
I have a daughter already diagnosed with ADHD but still not on meds (we are working on this) and our relationship is sooo complicated, every single move from waking up to going to sleep is exhausting with her, I feel like talking to her is talking to a wall. I end up feeling like the worst mom like you said. You gave me hope that with the meds things might get better .

amother

Mon, Oct 11 2021, 7:33 pm

amother [ Papaya ] wrote:

My kids are like worlds apart, with meds and without meds.
When they take their 'vitamins' (as we call it), they are typical adorable mature studious easygoing innocent children.
You don't want to know them or me without it...

amother

Mon, Oct 11 2021, 7:43 pm

My teenage son is already off his 'vitamins' that he was on for afew years.
He's now dorming in Yeshivah, he overheard a conversation with a fellow roommate and his father.
He was asking his father for a refill for his Ritalin and intunive. He most probably thought that no one in the room would know what he's taking about.

I told my son that 50% of the kids are taking meds, and the other 50% should be taking it!

Mothers, if your kid (and you) are struggling, please don't deprive them of having the best life possible, with a positive relationship with you, by giving them the much needed medication. In today's days, there's no shame in taking it.

Some people were admiring my strength and positivity and being so cool calm and collected Regardless of what I'm going through in life, and asked me what my trick is.
My answer was: Medication. No shame.
(I'm not officially on it,but if I go through a crisis or stressful situation, I'll take something to keep my sanity).

ROFL

Tue, Oct 12 2021, 1:39 am

I didn’t read the whole post. But if your child gets evaluated for a developmental disability you usually can get state aide for them. Where do you live (state is good enough) we can help you get resources.

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????

amother

Ecru

Tue, Oct 12 2021, 1:40 am

amother [ OP ] wrote:

I basically asked this because I sometimes feel that I as someone who got the asd should never been born

amother

Teal

Tue, Oct 12 2021, 3:17 am

amother [ Ecru ] wrote:

I basically asked this because I sometimes feel that I as someone who got the asd should never been born

You definitely should have been born, and you matter.

Fellow autistic woman here! You need to learn to embrace yourself and love yourself. If you have tiktok, insta, or youtube, look up autistic influencers and neurodiversity. It helped me a lot be more kind to myself.