I’m bored 😂 I’m a mom of a SN child AMA

amother

Wed, Mar 20 2024, 9:06 pm

amother Lightblue wrote:

What would you tell a mom of a young SN child who is struggling with balancing it all physically and mentally

Like I said, I think it’s important not to make your whole life about the SN child. Go out , do things and don’t spiral into negativity. Obviously the physical part of it cannot be helped but mentally… I am always dressed nicely, I take care of myself and my house etc
I don’t do more than I can handle. I don’t take my SN child on outings on Sundays for example because it was stressful and exhausting. We stay home because it works for us and everyone is happier. I have a lot of help through insurance and programs in town. I dress her well and keep her clean so people want to interact and take care of her.

I just think it’s very important not to get bogged down with the heaviness and the despair of it. You are more than your circumstances and it shouldn’t define you.

Does that make sense ? 😂

amother

Lightblue

Wed, Mar 20 2024, 9:38 pm

amother OP wrote:

Thanks for your response!
Hopefully someday soon I’ll have the right support and help needed so I can do all that. Right now I have more on my plate than I can handle but iyh this season will pass too

amother

Wed, Mar 20 2024, 10:05 pm

amother Wandflower wrote:

Do you find yourself having to balance the needs of your special needs child and the needs of the other kids?

Hmmm… I mean they’re life is definitely more chaotic then a regular family but we try to look at things with a sense of humor and like I said we try not to get bogged down with the heaviness of it and we pass that on to our kids.

I do have a lot of help at home through insurance. When Shabbos is later (now that they’ve changed the clocks) I will put her to bed before the meal so we can have a normal quiet meal. She goes to sleep away camp for 6 weeks in the summer so we do a family trip then…

I honestly don’t think my kids have any complaints. She’s a part of our family. A harder and more difficult part but she’s not malicious and she means well. We speak about how she’s going to pull us to the front of the line when moshiach comes. We get to skip the lines at amusement parks. We went on Make a wish.

Like I said, I really truly believe it’s all in the attitude.

amother

Watermelon

Wed, Mar 20 2024, 10:37 pm

amother OP wrote:

It's not all in the attitude. It's also in the practical support you have or don't have. You sound like you're lucky enough to have enough support.

Sunny Days

Wed, Mar 20 2024, 10:53 pm

amother Watermelon wrote:

It's not all in the attitude. It's also in the practical support you have or don't have. You sound like you're lucky enough to have enough support.

This is very true!
We all love my child with sn, but the end of the day her care, and by that I don’t even mean the physical aspect necessarily. Just the appointments, the scheduling, insurance, dme, being in contact with the medical team and all the loads of paperwork is what overwhelms me most.

Maybe I’m just too tzifluigen, but we've lost out on programs just because the technicalities were a bigger hassle…

amother

Wed, Mar 20 2024, 11:07 pm

Sunny Days wrote:

I don’t know. Maybe I’m used to it but that’s a regular part of my life now. I had her when I was very young and don’t know any other life than traveling for appointments and bloodwork etc but it’s really only once every other month at the most. A hospital stay for us is once a year for a couple of days for an eeg bh.

Insurance is a killer money wise but they bh cover everything because we pay for out of network.

Sunny Days

Wed, Mar 20 2024, 11:37 pm

amother OP wrote:

It’s not so much the actual appt days, though they're more frequent then once every month, and do require travel, but all the logistics and like I said all the PAPERWORK and phone calls and just running after this medical supply or that medication/pharmacy etc and this Dr or that…

amother

Thu, Mar 21 2024, 12:01 pm

Frumomsi wrote:

You sound super positive kol hakovod.

Wondering if you knew immediately after birth that she was born with special needs and either way, did you go through a phase of trying to “cure” her and/or trying alternative therapies that promised near magical results?

No, I didn’t. She had failure to thrive and was an extremely difficult baby. She was referred to EI at 3 months and I was told she would need more therapy than they could provide so I also had to take her for multiple therapies privately weekly in addition to the at home services.

I wasn’t aware of how severe the situation would be for a while.

amother

Thu, Mar 21 2024, 12:06 pm

Sunny Days wrote:

I agree!
And I’m glad you’re not overwhelmed with the above. Most other moms I know are drowning, like me… so glad to hear it can be managed well!

Would love to hear how you keep on top of it all.
Or did you not have these questions in mind when starting your ama?

I don’t know- maybe you have more going on than us?

I have to travel 1.5 hr each way to a neuro once every 2-3 months.
Bloodwork every 3 months.
Hospital stays are once a year.
Adolescent Dr (not sure what it’s called 😂) once every 6 months
And then the basics like podiatrist , well visits, specialty eye dr are usually only once or twice a year.
I don’t do any extra therapies other than what her IEP provides.

I don’t have paperwork 🤷
I get three month supplies of all her meds so I’m not running to the pharmacy 24/7.

And that’s basically it that I can think of…

TwinsMommy

Fri, Mar 22 2024, 1:28 am

My special needs twins are 17 and I'm drowning. You sound so calm and put together!

One of my problems is that both my kids are "in between". Too special needs for Jewish schools or staying in hotels or going on trips or taking an airplane or getting together with people more than a simple Shabbos lunch........ but not special needs enough for a lot of help. Each of them on their own is ok enough to manage but their behaviors and needs trigger the other...... so if I try to get my more high functioning teen to do a chore or do schoolwork or exercise (none of those are things she regularly does!) and she does so much as whine or argue, it throws her twin brother into a total tailspin and when he flies off the handle he gets violently aggressive. So we walk on eggshells a lot.

Between medicaid waiver stuff and doctor stuff and therapy stuff and school stuff and summer stuff and paperwork stuff and behaviors and behaviors and behaviors and how the heck do I also work and keep the house from flying........ I just wonder how to manage most of the time. We stopped at the two kids because we were far too overwhelmed.

ok so here's my question--- you say you don't have paperwork. WHAT?????

For diagnoses
For reapplying for county board services
For medicaid waiver
For MFE/ETR/IEP/FBA (anyone want alphabet soup?)
For therapists
For doctors
For applying for SSI and getting denied and applying again and getting denied and....
For summer (special needs daycamp paperwork is like 18 pages long and now I'm going through the state office of disabilities for summer job stuff which is its own special hell)

After her previous surgery, I had to call no fewer than 30 DME companies and get denied for supplies over and over. Thankfully this past surgery, supplies are easy to get. But medicaid itself only covers part of them. So I had to go through medicaid waiver for the rest and we're on our 5th board of dd SA in the past 5 years and each one knows something different than the previous one. So yes I have a room full of ostomy supplies but that represents hours of work! And she doesn't apply her own ostomy so I'm never more than 30 minutes away from her--- and she's the easy twin.

It's 1:30, time for bed. lol

Sunny Days

Fri, Mar 22 2024, 2:56 am

TwinsMommy wrote:

Sounds very familiar! Crazy what we put up with to get the medical supplies our kids need. Starting from every silly syringe ( Banging head

enfit)

Thanks for posting and I’m also very surprised op has no paperwork!

amother

Bellflower

Fri, Mar 22 2024, 8:32 am

Every special needs child is different. I have 2 so one is more emotionally difficult and one is more physically difficult. And yes the PAPERWORK!! I had them when I was young so this is all I know, it was very very difficult in the beginning and got much easier over the years. They became more independent and I networked and found out all the help that's available in my city. I don't think I could manage if I didn't live in NYC because they have so much to offer in terms of assistance. Also we limited out family size so my life is very manageable if not the one I dreamed of.