How much do you accommodate special needs children

imorethanamother

Sun, Dec 25 2022, 2:23 am

amother Tuberose wrote:

With all due respect, if you don’t have a SN child with autism then you have no business answering OP.

I have a 18 year old high functioning autistic child.
Diagnosed at age 2.
& OP your question is very valid & there are no easy answers to the layman. My kids, friends, neighbours etc have the best of intentions but don’t walk in our shoes, or better yet , don’t walk in our child’s shoes. We have no idea what their life really feels like. We can try to imagine but we don’t know.
I found a therapist/coach about 8-9 years ago who is an expert in this field & I go to her for my questions Re my son.
For everyone else I smile & say thanks for the advice. But really there are no easy answers

I have a moderately functioning teen and I think mushkamothers advice was kinda spot on.

Since the living room impacts the whole family, you need to push him on this because it disrupts everyone. The candles didn’t really disrupt anyone. We also can’t be super rigid in our own ways and most people let the candles stay lit for a really long time. Why would you blow them out unless you were leaving the house?

Sometimes our BCBA told us to push back on his rigid preferences to get him used to change instead of insisting on routine. Over time this methodology helped us tremendously as a family so that he could more easily adapt when things didn’t go his way.

amother

RosePink

Sun, Dec 25 2022, 6:40 am

Honestly to avoid meltdowns I would tolerate a lot of things.

On the other hand helping our kids become more flexible is going to help them a lot especially when we’re no longer here (after 120). Social stories, video modeling, etc. are all helpful and when holidays or other changes are coming up I try to be proactive and talk through what to expect. Repeatedly.

amother

Quince

Sun, Dec 25 2022, 9:06 am

amother RosePink wrote:

I think this is the key.

If you don't create any boundaries or have any expectations because you are willing to do anything to avoid a meltdown, then you aren't doing your child a favor because you are preventing them for being able to interact in the world.

amother

Sun, Dec 25 2022, 4:09 pm

mushkamothers wrote:

With the disclaimer that I have no experience at all with special needs kids, I would think it's however much the accommodations affect the family. That was the bar explained in a book about kids with anxiety. If the family is making accommodations around the anxiety (mom taking phone calls at work, driving out of the way to avoid a certain street, etc) then it's too far. If it doesn't impact anyone else then they can drive themselves crazy.

The point here is to make sure it doesn't affect daily living and to teach kids the skills (again this is specific to anxiety not at all special needs) to live together with others and to have a normal daily life.

So for example, the living room is a shared space and if his creations block off a certain part where nobody else can walk or clean, that's not fair to everyone else. The candles are a lot less intrusive, unless you had to go to sleep early for an early morning flight or appointment.

Great post!! You have a lot of parenting experience of course I want to hear all responses - I believe you give classes as well so your post is much appreciated.

My question is does insisting that ages 10 and up kids leave the room? It sort of does affect them if they are relaxing on the couch but I've been trying to teach him to be flexible for around 4 years now and it is still an issue! As crazy as that sounds. I tried saying he has a certain spot, tried saying I will move everything to his room.

amother

Sun, Dec 25 2022, 4:11 pm

BrisketBoss wrote:

You insist when you have to, accommodate when you can do so graciously (not spend a lot of time feeling resentful). Same with non special needs. It's a balance. Even for special needs kids, some things that we think of as needs are not REALLY needs.

I actually think at this point I can do what you are saying. After exhausting so much time, effort and head ache trying to teach this I believe I'm at the point where I can say I did my part and yes I can accommodate gracefully.

amother

Sun, Dec 25 2022, 4:13 pm

imasinger wrote:

It's not easy, for sure.

I try to pick my battles, keeping in mind that the more I can help them build flexibility, the happier they'll be in the rest of life.

In your case, OP, I'd suggest first listening to WHY he prefers living room for building. Is it a sensory issue with warmth, light, nearness to you? Once you figure out the root cause, it's easier to come up with a solution that works.

Do you have a BCBA to discuss all this with?

Yes we talk about why - he prefers living room because he wants to be in a warm room with lots of people nearby but not in the room with him. Tried therefore saying I'd stay in the room with him downstairs or upstairs.

Don't have BCBA as I was told not to do ABA for his level autism.

amother

Sun, Dec 25 2022, 4:15 pm

amother Midnight wrote:

People who don’t have a high functioning special needs child will never understand this.
My child would repeat the same phrase over and over for weeks straight. There was no way to stop him.
I told everyone else to use ear plugs.
Safety issues are a no go. He doesn’t have to light. I would not give in on anything that poses a safety risk.
Lego, hard one. I like the suggestion of trying to find out why he “has to” build in the living room. I’m guessing it’s because he wants to be close to where the action is. Is it a possibility to sit down with him in a calm time and explain that you’re not going to keep people from using a shared space but you will try to have everyone be careful around his creations?

Very much relate to what you wrote. Until I had a kid like this I would totally not understand my own post - why can't you get him stop, why can't you teach him no. It's not like anything in regular parenting.

Tried sitting in calm time to talk it out - he gets it then but it does not carry over to when he actually has to accommodate his siblings.

amother

Sun, Dec 25 2022, 4:16 pm

ectomorph wrote:

I have a child like this. Have you tried medication?

Tried many medicines (vyvanse, anti anxiety, guanfacime, etc for 3 years and then stopped everything. The meds made him violent, crazy, not eating, not sleeping. Not going that path again (for now).

amother

Sun, Dec 25 2022, 4:17 pm

Surrendered wrote:

This is a very tough balance. I do go of my way to accommodate this child's needs as much as possible.
1. He doesn't handle a NO
2. Gotta pick my battles, many times it's not worth saying no.
3. I try to accommodate, and request stuff from him. Yes you can, but first you need to... If you...
4. I have conversations with the other children to explain that he's different and why I Give in to him.
5. I make sure to give enough/extra attention to the other kids, out of his presence.
I understand your struggle, it's really difficult!

Yes! relate to this very much.

amother

Blushpink

Sun, Dec 25 2022, 4:18 pm

I have a HFA daughter. She has anxiety too, so if I told her it was a fire hazard, she’d be the first to insist I put it out. I try to have similar expectations for her and my other kids because she’s in a regular school. There are allowances we have to make, and that’s why she’s not fully mainstreamed yet. I have frequent meetings with her therapist and they often provide me with eitzos as to how to react in any given situation.

amother

Blushpink

Sun, Dec 25 2022, 4:20 pm

amother OP wrote:

Even with having a child who is similar- there are enough differences for it to be a very individual thing. My child is a girl, yours is a boy. They’re probably different ages with different ancillary diagnoses. Their level of function is probably not exactly the same, because people are individuals. What works for me, may very well not work at all for you. Please be kind to yourself. We all do the best we can.

amother

Sun, Dec 25 2022, 4:22 pm

amother Burlywood wrote:

If the fallout of insisting is worse than the fallout of letting them have their way, I let it go. Sometimes it’s a gamble.

But we also work on this kind of rigidity from the back end. Does your child have an ocd diagnosis?

I like this a lot -it gives me permission to let go of this issue.

Not diagnosed with OCD but probably has it.

ectomorph

Sun, Dec 25 2022, 4:31 pm

amother OP wrote:

Tried many medicines (vyvanse, anti anxiety, guanfacime, etc for 3 years and then stopped everything. The meds made him violent, crazy, not eating, not sleeping. Not going that path again (for now).

It sounds like you need ABA.

ectomorph

Sun, Dec 25 2022, 4:45 pm

ABA has essentially permitted my family to function again. Among other things, my child learned to eat instead of only drinking bottles. My child has more safety awareness than previously. My child can play with siblings for more than a few seconds.

-toilet training
- listening to instructions
- ability to take turns
-rigidity, making it livable

amother

Burlywood

Sun, Dec 25 2022, 5:44 pm

amother OP wrote:

I like this a lot -it gives me permission to let go of this issue.

Not diagnosed with OCD but probably has it.

Just to explain a little more, I used think I had to put my foot down when it was encroaching on other family members but then I realized they were getting even more traumatized from the ensuing meltdowns then they would have from whatever ocd DC with special needs was being rigid about. So I learned it was smarter to let more go. If I think DC is emotionally and cognitively in a frame of mind to be able to comply, I will insist. If it's going to cause them to spiral, probably not worth it.

But I guess the only way we can take this approach and not be afraid we are raising a tyrant is because we are addressing the rigidity biomedically as well.

amother

Sun, Dec 31 2023, 5:21 pm

Just bumping this up in case this post helps anyone. The more I work with my child the more I realize I should NOT accommodate. Mushkamom - I go back to your post now and see that yes- you were quite accurate. The more I accomodated and made my other kids accomodate the crazier the demands got. Now I am undoing all accomodating slowly but surely but I am super super careful to NOT accomodate for anything lol. I sound like a witch but I am a beyond caring and loving mom that turned into a shmatta head from this dear child. (not his fault, mine since I allowed it).

I just want to help other ima's in case they had this question.

BrisketBoss

Sun, Dec 31 2023, 5:28 pm

amother OP wrote:

Good for you! It can be hard to figure out. There's no problem with accommodating requests that feel reasonable. I think when the kid senses that it's not entirely reasonable or something that everyone is comfortable with, they do feel like they need to push to get clarity.

And it's not about SN, except that with some SN kids people feel more like they 'should' accommodate.

When I was younger I had some obsessive compulsive things that were accommodated and I think maybe they should not have been.

amother

Kiwi

Sun, Dec 31 2023, 5:31 pm

amother OP wrote:

I like this a lot -it gives me permission to let go of this issue.

Not diagnosed with OCD but probably has it.

I once listened to a class on ACD- autism compulsive disorder. It's not a real diagnosis and it's not in the DSM. But it's an interesting way of looking at a very common tendency for people with ASD. It may seem similar to people with OCD, but it comes from the ASD so it's slightly different.