ASD kid parents, Check In

[sonrisa]

How is everyone?

Me: Argh. We finally had the meeting with the school today to figure out services for my diagnosed kid. The school specialist (WHO HAS NEVER MET OR INTERACTED WITH MY KID) basically said she thinks all the problems my kid has are because they think they are special and don't think rules apply to them. *AND* the reason they think they are so special and the rules don't apply to them is because we affirm they are nonbinary. So the person at the school who is supposed to help my kid navigate their ASD is antitrans. I'm fucking pissed. 

[lucybrown]

Holy shit. What an ass.

We’re doing ok-ish. Two weeks at home with both kids was a lot. We had a double whammy of flu/Covid before a long Thanksgiving break. I love them, but need a break.

DS (5) finally moved off the waiting list for private speech therapy. His stutter is getting worse and he needs the extra support. I’m just overwhelmed with basically daily appointments for our household. I’m tired.

[sonrisa]

Ugh. Flu/Covid and long break is a lot. I'm glad your child is finally getting help. I hope you see progress.

I know what you mean about constant appointments. We had 10 medical/dental appointments in the family the week leading up to Thanksgiving.

[sonrisa]

Oh *and* ...... (Not an ASD thing but just one more shitty part of today)

They sang in a little concert with their out of school chorus this evening. The kid who was next to them left the row and told their mom they wouldn't stand by the "boy in girl's clothing." And apparently the parent thought that was a legit objection because they moved her.

Just heard about it from DH who was standing near the mom when it happened. I'm fucking done.

[jg183]

WTF sorry I havent followed but where in the hell do you live??? This is so not ok and you need to raise hell. I hope you are losing your shit and taking this to the top

[lucybrown]

Thanks. He has been getting speech 2x weekly through school, but it’s not enough. H questioned whether private therapy was needed, so I reached out to his school SLP. She said he “absolutely would benefit from private sessions.” We’re pretty aware of his challenges, but it stings a little when others see them too. I guess that never feeling goes away.

Do you have any other options with school? I’m shocked on your behalf. I’m not a burn it down type, but would report them.

Edit: your second post…wow. This is all unacceptable and needs to stop NOW.

[jg183]

my kid doesnt have ASD but DMDD so enough challenges to fill santa's list... we are actually on a good streak for once. The only struggle we have is he is resisting the one home therapist we have but the other one has offered to come to the next appointment so they can possibly both be there so maybe that will help. One is a therapist and one is a skill builder. He needs both but apparently my kid thinks he doesnt need any help. ugh

[sonrisa]

Dec 1, 2022 23:11:32 GMT -5 jg183 said:

WTF sorry I havent followed but where in the hell do you live??? This is so not ok and you need to raise hell. I hope you are losing your shit and taking this to the top

We live in the fucking Bay Area - supposedly the most liberal and LGTBQ friendly part of the country. And I had been really happy about how the rest of the school and the teacher handled my kid's name and gender marker changes this year and how supportive they are. We kept hearing how this was their first trans kid ever, but they were affirming. But apparently not the special ed department.

[sonrisa]

Dec 1, 2022 23:13:50 GMT -5 jg183 said:

apparently my kid thinks he doesn't need any help. ugh

Yay for the good streak!  I wish kids were more self aware. But then we wouldn't be on this thread, would we?

[jg183]

Dec 1, 2022 23:18:16 GMT -5 sonrisa said:

Dec 1, 2022 23:11:32 GMT -5 jg183 said:

WTF sorry I havent followed but where in the hell do you live??? This is so not ok and you need to raise hell. I hope you are losing your shit and taking this to the top

We live in the fucking Bay Area - supposedly the most liberal and LGTBQ friendly part of the country. And I had been really happy about how the rest of the school and the teacher handled my kid's name and gender marker changes and how supportive they are. We kept hearing how this was their first trans kid ever, but at least this year they were affirming. But apparently not the special ed department.

wow that is not where I expected you to live! OK your school really needs to fix this ASAP. You need to call the director of SPED tomorrow

[sonrisa]

We did get a call later in the day that Easter Seals might finally be providing services. But I'm reserving my excitement until it happens because last time they bounced us around, out of the organization and back to kaiser, who sent us back to them.

[jg183]

Dec 1, 2022 23:22:08 GMT -5 sonrisa said:

Dec 1, 2022 23:13:50 GMT -5 jg183 said:

apparently my kid thinks he doesn't need any help. ugh

Yay for the good streak!  I wish kids were more self aware. But then we wouldn't be on this thread, would we?

Yeah he told the therapist he doesnt need a skill builder because he has a lot of skills.... 
oh sweetheart you do but being nice to new people apparently isnt one so we will be working on that one

[mysteriouswife]

I’m very sorry your child is experiencing such hateful bullshit. Can you escalate to the board?

DS doesn’t have diagnosed ASD. He is OCD induced anxiety with sensory processing. We finally got the school to agree to speech evaluation. He has a stutter and oral stimming. We also think his food pickiness is texture related. We have been asking for this since September. His teacher agree in email she was concerned his pausing is becoming worse. Now the counselor is ready to move forward with an evaluation. You would think a letter from his pediatrician and OT would have been enough. We also got a letter about renewing the 504. Anyone know if speech goes in a 504?

I’m annoyed that we have to jump through hoops to get services for our children. I can relate to some of these post. I’m sorry you are also dealing with this.

[mysteriouswife]

Dec 1, 2022 23:18:16 GMT -5 sonrisa said:

Dec 1, 2022 23:11:32 GMT -5 jg183 said:

WTF sorry I havent followed but where in the hell do you live??? This is so not ok and you need to raise hell. I hope you are losing your shit and taking this to the top

We live in the fucking Bay Area - supposedly the most liberal and LGTBQ friendly part of the country. And I had been really happy about how the rest of the school and the teacher handled my kid's name and gender marker changes this year and how supportive they are. We kept hearing how this was their first trans kid ever, but they were affirming. But apparently not the special ed department.

Wait you are in San Fran? I really expected to say you lived in TN with me. I’m shocked. I’m still very sorry your child is experiencing this. I want to say that I would tell them to fuck off. But being a parent in the moment is a lot different than being behind a keyboard. I always have a huge plan in my head how I’m going to handle 504 and doctor appointments. Then I get there and barely hold my head up. This is parenting thing is difficult enough without outsiders being jerks

[1yeartogo]

Sonrisa

My DS has a number of challenges and dxs and I just wanted to validate for you that along the way he has had teachers, a principal, and for 2 years even a school case manager who was supposedly trained and skilled to work with students who need support that blamed everything on his attitude and behavior. Think “he doesn’t do well because he doesn’t want to” or “if he would just try.” It is infuriating dealing with people who don’t give your child an opportunity because they don’t look and act like they think they should and consider their history and situation.

I think you should keep escalating the school issues. Get as much as you can about the dx and lack of supports in writing and the hateful incidents happening and make people aware this is not okay.

I have learned that no one will look out for and advocate for our children if we don’t. Sometimes it feels like parenting a child with differences can be the hardest job in the world…but despite everything and whatever the world throws at us we keep doing it because it’s the right thing and we love them and want everything for them.

[sonrisa]

Dec 2, 2022 6:23:55 GMT -5 1yeartogo said:

Sonrisa



I just wanted to validate for you
.

thank you. I’m sorry you have faced similar challenges.

[yourmother]

sonrisa,

I’ve seen you here for many, many years. I KNOW you’re going to burn it down. What bullshit. Your DC is lucky to have you in their corner.

[yourmother]

I’m gearing up for an ARD meeting coming up in a week or two. No complaints with the school, they’ve proven to be extremely supportive.

My only fear is that students will get tired of his scripting and repetitiveness. I haven’t seen that yet, but do see the other kids maturing.

[macmars45]

I'm so sorry sonrisa. That is such bullshit. Burn it to the ground! You are an amazing advocate for you DC!

Anyone have any ideas on retraining annoying habits? DS6 clears his throat all.the.fucking.time! Like every few seconds. He first developed the habit when he was sick in Oct and it lessens somewhat until he gets sick again and then I want to run screaming from my house. It's like nails on a chalkboard. He's FINALLY going back to school today after 9 days home (TDay break and a cold) and I'm doing a happy dance! I need a break from my child who I love very much.
FWIW H ignores it completely and I tell DS to breath/take a breathe. My way eventually somewhat helps... just in time for him to get sick again. *beats head against wall*

Also we are bribing our child to take cough/cold medicine while sick and no regrets chicken. All that stuff childless me said I'd never do parent me laughs at and does gladly.

[litebright]

Doing generally well. DD1 is a freshman, no academic supports. She joined the swim team and this is the first really vigorous exercise (practice three nights a week + meets) that she has done regularly, and she's talking about how she often "pulls a muscle," including wonky shoulders (she has scoliosis) and what I think, based on her description, are ligaments in her foot popping out of place and making it painful to walk. This happens to me sometimes, too, but I wonder if it's related to her low tone (which is very common with ASD -- and I wonder to what extent that has affected and/or even potentially caused her scoliosis as well).

We went to a late-night Harry Potter-related outdoor event this week with a family that we're friends with, and at one point the kids were discussing Patronuses and DD1's friend was talking about maybe his would be a sea urchin, and she blurted out something implying he had "no backbone". OUCH. OMG. She immediately apologized and tried to explain that she really meant more in terms of having a "hard shell", but hooo boy. Afterwards, I asked her to text her friend and apologize again, and I asked about whether she often finds herself in situations like that one -- maybe I think her social skills are better than they are? She can come off as just ruthlessly cutting, OMG, and I really don't have a sense of how often she might be alienating people inadvertently, because I don't see most of her interactions.

I think she and her friend are okay, but sheesh. I'm the kind of person who cringes for years over things I said myself, now I'm cringing at things FOR my kid.

[stemmie]

macmar-

That sounds more like a tic rather than a habit. Tics are generally best ignored as calling attention to them can make them worse. I feel for you, my brother used to have a sniff/throat clearing tic. Brother would sometimes get really "ticky" after an illness-- even from viral infections. It always passed and he improved a lot by college.

[yourmother]

I have a question. I’m not sure when to tell my DS about his ASD diagnosis. He’s 7 and in 2nd grade, but has the maturity of a 5 year old.

Does anyone have any ideas on when and how?

[liveintheville]

I’m so sorry about the treatment of your child. That’s totally unacceptable.
Mine is doing well. He’s in 7th grade so has been on a plan for a long time. He’s in a specialized homeroom. He’s being mainstreamed but has supports in place for this.
What I’m really worried about is that he’s got a piano recital this Saturday. It’s zoom so that helps but I’m still concerned about his anxiety. And he’s got his karate black belt test on Sunday. It’s a 4 hour test. I plan to give him his medicine right before the examine to help keep him stabilized but it’s going to be extremely stressful. But we’re so proud that he’s up for black belt!

[macmars45]

Dec 2, 2022 11:39:39 GMT -5 yourmother said:

I have a question. I’m not sure when to tell my DS about his ASD diagnosis. He’s 7 and in 2nd grade, but has the maturity of a 5 year old.

Does anyone have any ideas on when and how?

I told DS6 his brain works differently than other people and that it's not good or bad, it just is. I told him within a few weeks of his diagnosis when he was 5 summer of 2021. We were driving in the car and I mentioned the eval appt we'd had and that he'd been diagnosed with Autism. We have continuing conversations about it randomly. Sometimes he brings it up, sometimes H/I do. We regularly talk about whether he feels overstimulated or dis-regulated to help him recognize it and do things to help him feel more balanced (fidgets/punching bag/trampoline etc).

The book The Neurodivergents Autism Real Experiences of autistic children by I.M Orkwerd has been amazing in him identifying himself and his challenges and feeling like it's okay to be who he is. The author is neurodivergent herself.

Another book DS really liked is Too Sticky! Sensory Issues with Autism by Jen Malia.

Books have been a great way for me to have conversations with DS. We did the same when his cousin came out as trans 2 years ago.

I worry about DS' classmates maturing socially way faster than DS will and leaving him friendless and alone yourmother. 

[mysteriouswife]

Dec 2, 2022 11:39:39 GMT -5 yourmother said:

I have a question. I’m not sure when to tell my DS about his ASD diagnosis. He’s 7 and in 2nd grade, but has the maturity of a 5 year old.

Does anyone have any ideas on when and how?

DS is also 7. We openly explain to new people why DS may not speak or interact. He has never recognized he is not like his peers. I think having open and honest discussions is helpful. When he gets upset he can’t do something or is slower than most we explain it’s okay. He also knows his brain isn’t wired to be the same. I’m not sure when he will realize he is different. When that time comes we will attempt to handle it as gracefully as possible. Who knows if this is the right approach

[yourmother]

Dec 2, 2022 12:36:33 GMT -5 macmars45 said:

Dec 2, 2022 11:39:39 GMT -5 yourmother said:

I have a question. I’m not sure when to tell my DS about his ASD diagnosis. He’s 7 and in 2nd grade, but has the maturity of a 5 year old.

Does anyone have any ideas on when and how?

I told DS6 his brain works differently than other people and that it's not good or bad, it just is. I told him within a few weeks of his diagnosis when he was 5 summer of 2021. We were driving in the car and I mentioned the eval appt we'd had and that he'd been diagnosed with Autism. We have continuing conversations about it randomly. Sometimes he brings it up, sometimes H/I do. We regularly talk about whether he feels overstimulated or dis-regulated to help him recognize it and do things to help him feel more balanced (fidgets/punching bag/trampoline etc).

The book The Neurodivergents Autism Real Experiences of autistic children by I.M Orkwerd has been amazing in him identifying himself and his challenges and feeling like it's okay to be who he is. The author is neurodivergent herself.

Another book DS really liked is Too Sticky! Sensory Issues with Autism by Jen Malia.

Books have been a great way for me to have conversations with DS. We did the same when his cousin came out as trans 2 years ago.

I worry about DS' classmates maturing socially way faster than DS will and leaving him friendless and alone yourmother. 

Thanks for the book recs! I think we’re getting close to telling him. I think casually mentioning it will go a long way, along with the books.

His peers knows he’s quirky and different and I think for the most part, protect him. However, he’s very decisive and that can be off-putting for those around him. It’s all so tricky!

[wesleycrusher]

jg183 or anyone else with a kid with a DMDD diagnosis- I have a couple questions. They have just changed DS diagnosis to this- not sure if it fits, but other diagnosis don't quite seem to fit either...

does your child display behaviors across multiple settings (home, school, etc.)?

does your child display pre-mediated destructive behavior (not just while angry)?

[litebright]

Dec 2, 2022 11:39:39 GMT -5 yourmother said:

I have a question. I’m not sure when to tell my DS about his ASD diagnosis. He’s 7 and in 2nd grade, but has the maturity of a 5 year old.

Does anyone have any ideas on when and how?

I think I first told my DD1 around age 5, but IME, this may not be a "reveal" or "moment" that rocks their world or that they carry with them -- so don't stress about it too much. I very much overthought it, had a heartfelt-but-simplified talk with DD1 about it ... and she promptly forgot that I'd said anything at all to her about the subject, lol. I put so much effort into pre-thinking that conversation, but any one particular moment totally rolled off her -- it was the kind of thing that was better integrated into multiple conversations over years as she grew up, and real-world examples of, "Oh, well, you are probably having a hard time with X because you have autism so your brain works differently, so we are going to try Y to help you figure X out!" and then answering any specific questions.

[wesleycrusher]

macmars45 my DS gets transient tics- ones that come and go and are exacerbated by things like illness, lack of sleep. We treat them with medicine depending on what the tic is- some are more noticeable than others. Most recent was facial grimacing- he's 10 and while they don't bother him per se, he is aware enough to know that other people notice. So he'll ask for meds himself now.

[lucybrown]

macmars45, Both of my children also get transient tics. DS' tics combined with echolalia is...a lot sometimes. The hardest thing about parenting him is that the times when I'm most overstimulated seem to align with when he's dysregulated and highly sensory seeking. It's tricky. H does evening/bedtime routine most days because I don't have the patience to deal.

My oldest is diagnosed ADHD, but fits a lot of ASD criteria as well. And also has skin picking, tics, etc. habits. It's so, so hard for me to ignore them. But the attention truly does make it worse. One tic may go away and a new one replaces the old. No advice, just commiseration. Ear plugs help.