Prayer request daughter concussion & lack of fear

[Katy]

If you’re of the praying sort, please pray for my DD4, who is probably but not definitely on the spectrum. She got irritated with a sibling, jumped hard on the couch, and flung herself backwards thinking she’d crash onto a cushion but instead the back of her head collided with the top of the back of kitchen chair she pushed there an hour before. When I yelled at her to stop climbing over the back of the couch. 

If we have to go to the ER this will be her third visit in 2023. And she did two other dangerous things in the last two hours. And she nearly got hit by a car from racing into traffic about two weeks ago. It’s as if her complete lack of fear has combined with a death wish. 

[Terabith]

Praying!  That is a scary combination of traits.

[Drama Llama]

Praying for a quick recovery this time, and safety going forward.

Impulsiveness like that is sooooo hard.  Does she lack fear altogether, or does she just act without thinking and the fear comes later?  Both types of kids are challenging!

[ScoutTN]

Praying!!

[ktgrok]

Praying she isn't hurt, and she finds safer ways to exist. I'm so sorry. 

[Melissa in Australia]

Sending positive thoughts 

[Kassia]

Also sending positive thoughts.  I hope she's okay and settles down after this.  Must be exhausting for you.  

[Katy]

50 minutes ago, BandH said:

Praying for a quick recovery this time, and safety going forward.

Impulsiveness like that is sooooo hard.  Does she lack fear altogether, or does she just act without thinking and the fear comes later?  Both types of kids are challenging!

The only time I’ve ever seen fear is with unenclosed heights like very tall slides with ladders instead of steps. Still slides are one of her favorite obsessions. She frequently describes places she wants to go by the slide she liked best there. The blue slide was an indoor waterpark. The frog slide, the whale slide, etc. 

Actually that’s not true, she seemed to have a brief fear of drains. Induced by a Sesame Street scene I think. 

[Catwoman]

Praying for your dd, Katy! 

[lewelma]

My older boy was like this. By the age of 5 he had had stitches in his head 4 times, including 1 very large tear in the middle of his forehead down into his nose (still quite visible at the age of 23).  He was just reckless  - biking, trampolines, tree climbing. After the 4th time, my mother told me that I needed to "teach that child some risk assessment". So that is what we did.  We talked about how to assess risk, what to look for, what was acceptable risk, how to protect yourself, etc.  He only had two other injuries in the following 7 years after we implemented this approach (a broken arm while ice skating and a concussion after falling out of a tree).  So I get it.  I suggest you take my mom's advice. Good luck -- it is scary!

Edited August 14, 2023 by lewelma

[kbutton]

Praying she can avoid TBI (or at least serial concussions) as you guys figure out how to keep her safe!

My less impulsive but still moderately scary and impulsive kid responded extremely well to Concerta and OT for sensory stuff. He did scare us in parking lots because he wouldn’t turn his head to look, but it turns out his peripheral visual field is wildly extensive. We did work on the head turning prior to and during driver’s training.

I would be curious if she has visual development issues—it can make it harder to judge how fast things are coming, distance, etc., and those issues are incredibly common in the general population and probably more so in the ND population. If so, it can be subtle enough to be obvious only in hindsight after the issue is fixed. BTDT.

[Katy]

22 minutes ago, kbutton said:

Praying she can avoid TBI (or at least serial concussions) as you guys figure out how to keep her safe!

My less impulsive but still moderately scary and impulsive kid responded extremely well to Concerta and OT for sensory stuff. He did scare us in parking lots because he wouldn’t turn his head to look, but it turns out his peripheral visual field is wildly extensive. We did work on the head turning prior to and during driver’s training.

I would be curious if she has visual development issues—it can make it harder to judge how fast things are coming, distance, etc., and those issues are incredibly common in the general population and probably more so in the ND population. If so, it can be subtle enough to be obvious only in hindsight after the issue is fixed. BTDT.

It’s in the family, so it’s possible. I appreciate it, hadn’t considered that. 

[mommyoffive]

Sending lots of good thoughts her way.  I hope she is ok.

[PeterPan]

HBOT is a miracle for concussions. 
 

Has an OT checked her for retained reflexes? She’s young yet at 4 but she needs some IT going. Have you considered ADHD meds for safety? Or just give her orange juice to up her methyls. But meds yeah. 

[PeterPan]

1 hour ago, Katy said:

The only time I’ve ever seen fear is with unenclosed heights like very tall slides with ladders instead of steps. Still slides are one of her favorite obsessions. She frequently describes places she wants to go by the slide she liked best there. The blue slide was an indoor waterpark. The frog slide, the whale slide, etc. 

Actually that’s not true, she seemed to have a brief fear of drains. Induced by a Sesame Street scene I think. 

Have you tried gymnastics with her? 

[rebcoola]

I will pray for you.  My middle child was absolutely fearless but somehow incredibly luck/coordinated so nothing bad ever happened.  It was a bad combo and big part of the reason they were enrolled in gymnastics lots of gymnastics.

[SanDiegoMom]

1 hour ago, kbutton said:

 

I would be curious if she has visual development issues—it can make it harder to judge how fast things are coming, distance, etc., and those issues are incredibly common in the general population and probably more so in the ND population. If so, it can be subtle enough to be obvious only in hindsight after the issue is fixed. BTDT.

Is there a name for this? I wonder about my oldest.  Though at 23 it might be too late and just "is what it is".  

[Katy]

50 minutes ago, PeterPan said:

HBOT is a miracle for concussions. 
 

Has an OT checked her for retained reflexes? She’s young yet at 4 but she needs some IT going. Have you considered ADHD meds for safety? Or just give her orange juice to up her methyls. But meds yeah. 

No, the post-pandemic wait for evaluations is more than a year in our area. The only official one was an occupational therapist. The Autism one is in November!

She loves orange juice, and I try (mostly unsuccessfully) to push a serving of beans every day. I have several MTHFR mutations (including several that have apparently not been studied), and DH has one. 

[East Coast Sue]

My dd was very much like this. It was most dangerous from 3-5 yrs of age. She was intensely sensory seeking. She had 2 major injuries and many more less severe. Our pediatrician referred us to OT and ST at our local children’s hospital and they assessed that she needed two therapists and me to keep her safe during her sessions. It was exhausting and nerve-racking for those years. Then, she started to mature and thrived in part because of swimming for long periods of time. She needed lots of sensory input or she’d injure herself with impulsive physical movements like you’ve described.

I’ll pray for your dd and you.  

Edited August 15, 2023 by East Coast Sue

[Katy]

55 minutes ago, PeterPan said:

Have you tried gymnastics with her? 

Not yet because she’s not potty trained yet but I have considered at least tumbling and dance when she is. She seems to have no physical awareness of her body sensations most of the time unless something extreme is going on like very hot bath water or throwing herself on the pavement on a snowy day. 

[kbutton]

56 minutes ago, SanDiegoMom said:

Is there a name for this? I wonder about my oldest.  Though at 23 it might be too late and just "is what it is".  

It’s not too late from what I understand. It can be convergence insufficiency or excess. That’s the one that has the most evidence-based treatment. A COVD can diagnose. It can be subtle—my son had an eye that would wander only when following an object as it approached his face. The regular optometrist blew it off. Side issues included trouble crossing the midline, and he had a lot of trouble reading for long once print got smaller on the page. He had to have his eyes fatigued to show symptoms, but once he did, his vision fell apart. He was an early to do everything kid, but he cruised with a single finger in the wall forever—we think it was his visual issues keeping him from walking because it was not due to coordination at all. He also, for a short time, would launch himself off of the front stoop, seemingly not realizing that it wasn’t as short of a distance as he thought. He showed early signs of being a climber, but he stopped after getting hurt a couple of times. He also couldn’t catch a ball of any size to save his life. He had no idea where it was when it got close, so he’d stick out his hands and duck.

My mom has convergence issues and probably incomplete visual development. Her main symptoms are not enjoying anything that scrolls, like FB, lol, and she has incomplete dominance/mismatch between dominant eye and handedness. She is a righty that does anything involving aim or sports with her left—golfing, batting, target practice, etc.

My other kid has incomplete visual development but still benefitted from reflex work and some motor/vision integration exercises.

HTH

[Catwoman]

How is she doing now, @Katy?

[Katy]

5 minutes ago, Catwoman said:

How is she doing now, @Katy?

No sign of concussion.  She's often asleep by now but at this point has more energy than anyone else in the house. Even DH & the older kids are asleep, and they're usually up until at least 10. She just came in for extra kisses.

[Catwoman]

44 minutes ago, Katy said:

No sign of concussion.  She's often asleep by now but at this point has more energy than anyone else in the house. Even DH & the older kids are asleep, and they're usually up until at least 10. She just came in for extra kisses.

I'm so glad she's not showing any signs of a concussion! 

[Kassia]

3 hours ago, Catwoman said:

I'm so glad she's not showing any signs of a concussion! 

Me too!  I hope tomorrow is a nice calm day.  🙂 

[DawnM]

Praying.   

[Catwoman]

I hope she's still feeling fine today, @Katy!

[Katy]

1 hour ago, Catwoman said:

I hope she's still feeling fine today, @Katy!

She seems okay. 

[Drama Llama]

37 minutes ago, Katy said:

She seems okay. 

I'm so glad

 

[Catwoman]

36 minutes ago, Katy said:

She seems okay. 

I'm so happy to hear that! I was wondering how she was doing. 🙂

[PeterPan]

On 8/14/2023 at 9:14 PM, Katy said:

Not yet because she’s not potty trained yet but I have considered at least tumbling and dance when she is. She seems to have no physical awareness of her body sensations most of the time unless something extreme is going on like very hot bath water or throwing herself on the pavement on a snowy day. 

They're doing interoception work with kids this age. https://www.kelly-mahler.com/what-is-interoception/

You can buy the curriculum and do it yourself. Don't wait for the OT. It's easy and it may make a major difference.

Did this dc have any trauma? Trauma causes dissociation and can affect the body awareness too, so it adds a layer of complexity. 

Given that the ADHD is affecting safety, it might be time to put meds on the table. Just a small dose. It's not a crime, not immoral. Safety trumps everything. If her body is that hard to live in and you try to start some ABA or social skills groups or whatever, it's going to be much harder. Maybe just a dab of meds to put her in a better place to receive the instruction she'll be given.

Have you looked into play based therapies? I guess funding is the issue, sigh. No diagnosis, no funding. Your ped could diagnose her to get you some funding. Doesn't have to be a psych. Some states have funding for this age through the ps, so the ps does an eval that gets you an IEP and opens doors. Girls are harder to get diagnosed, still it's something to look into.

[Katy]

36 minutes ago, PeterPan said:

They're doing interoception work with kids this age. https://www.kelly-mahler.com/what-is-interoception/

You can buy the curriculum and do it yourself. Don't wait for the OT. It's easy and it may make a major difference.

Did this dc have any trauma? Trauma causes dissociation and can affect the body awareness too, so it adds a layer of complexity. 

Given that the ADHD is affecting safety, it might be time to put meds on the table. Just a small dose. It's not a crime, not immoral. Safety trumps everything. If her body is that hard to live in and you try to start some ABA or social skills groups or whatever, it's going to be much harder. Maybe just a dab of meds to put her in a better place to receive the instruction she'll be given.

Have you looked into play based therapies? I guess funding is the issue, sigh. No diagnosis, no funding. Your ped could diagnose her to get you some funding. Doesn't have to be a psych. Some states have funding for this age through the ps, so the ps does an eval that gets you an IEP and opens doors. Girls are harder to get diagnosed, still it's something to look into.

Thanks. I'll look into the curriculum.  No trauma.  She's biologically mine. She was a bit premature and there are 1st cousins with autism on both sides of the family so I think it's probably genetic. Plus probably our older age and the bad case of double influenza & bronchitis I had in early pregnancy upped the risk. She was also born with heart defects that have a high correlation with autism.

I have no trouble with ADHD meds, most of my family has been on them. But it's very difficult to get an evaluation let alone a diagnosis of a 4 year old, and there's only a few meds approved to give before age 6 apparently. I've been going through this with DS5.

We are not in a state that does academic diagnosing. And apparently in this state the only diagnosis that counts is through one of two university connected children's hospital systems, both of which have very long waits. Her current ped agreed with autism less than 10 minutes after meeting her.

Honestly I'm kind of annoyed about the whole thing today because I got a condescending email about why she's not potty trained yet from a special ed teacher.  I may have ranted about it to DH. It's one thing for children to be rude, but a teacher is another story entirely. And don't tell me she read the IEP meeting notes and didn't pick up on the probability of autism and the need for bathroom help there.  Honestly I don't know a neurotypical child without a history of trauma who wouldn't have basically potty trained themselves at this point, and we started trying with her before the age of 2 when she saw her older brother being trained. She pooped in the potty the first day. She never successfully peed in one until less than 4 months ago. And unless she is going to the potty every ten minutes all day long and sitting for ten minutes she will have no success at all. She will hold it until she stands up and she'll pee less than two minutes later, with no comprehension of the urine on her legs even if you're asking her about it.  At any rate I've tried every few months since about 18.5 months. She never lasts through the third day.  I am just starting to learn more about a behavioral approach where she'll stay in pull ups and go sit on the toilet every hour. Which doesn't lead to learning sensations but apparently just teaches the habit. This can work for some kids and did work for one of her cousins.  That child took 4 years to potty train but has now gone a few months without an accident at age 7. DH has offered her big bribes to get trained, and she gets really excited about it for a day or two, but then gives up.

Have I mentioned that this school district doesn't allow red shirting and makes 4 year olds with fall birthdays enter K at 4? I just met a mom who open enrolled to a neighboring district that has all day pre-k for 4 year olds because she thought it was more developmentally appropriate.

ETA: yes all the therapies won't take her until we get an autism diagnosis.

Edited August 16, 2023 by Katy

[rebcoola]

So hard Middle kid was 7 before being fully potty trained its so hard.  Teachers throwing shade would piss me off.

 

Edited August 16, 2023 by rebcoola

[PeterPan]

9 hours ago, Katy said:

heart defects

You might look up the SPARK program and participate in that once she gets diagnosed. Your ped could do a referral for genetics also to look for syndromal things. If there's something going on that affects more parts, you might as well know. SPARK lets you know if they find something syndromal that is known, but other than that it's just something to participate in. They're becoming a clearinghouse, a one stop shop for researchers to gain participants, and the studies are pretty interesting. You can even make little bits of money, haha, like $10 amazon gift cards. And it's just plain interesting. 

9 hours ago, Katy said:

current ped

A doctor's diagnosis is enough to get you participating in SPARK. I'm surprised your insurance is holding back if you have an MD diagnosis. And your MD diagnosis should be enough evidence to start the IEP process through the schools. It is federal law that the ps in the district of residence is required to identify students with disabilities affecting their ability to access their education. So if there is *funding* that comes with getting an IEP, you already have enough evidence to fight for that. The ps might *want* you to get the psych diagnosis done privately but that isn't the law. And it's federal law, not state. 

That only matters if your state has funding for kids with an autism diagnosis in that window from 3-5. Remember you have EI (early intervention) funding from infant to 3 and you have services at 5 with school. So some states have options in that window, which is where you are. If you have an MD diagnosis, you have a diagnosis. Don't even get me started on psychs anyway... 

I'm surprised your insurance cannot be compelled to pay for services if the MD diagnosed and wrote referrals. 

What did you say your wait is? You're within a few months? And is this an autism school, someone familiar with girl autism, or a children's hospital that is going to give you the run around? Around here psych evals are such a hot mess. The children's hospital is a teaching school and they tend to shaft people the most. Private evals at an autism school or a clinic specializing in autism where they see more girls are more helpful.

Sounds like you have a lot on your plate! Sometimes it's hard to know what is most important, sigh, the social or the impulsivity or the sensory or language or what. We paid for a behaviorist ourselves for a while before we got our funding. It at least gave me someone to talk with so I could know if I was going crazy, lol. 

On the plus side, while things were terribly hairy at 4/5/6/7/8/9/10, now at almost 15 life is pretty good! Things are coming together, the services, all the work. So it's not bad FOREVER, if that makes sense. Your dd gives herself concussions. My ds gave *me* multiple concussions. Like I said, life was pretty hairy. Got pneumonia and developed asthma going through all the legal fights to get access to funding, sigh. But now, life is pretty good. 

So hang tight, be patient, keep working. It does get better.

[PeterPan]

9 hours ago, Katy said:

she gets really excited about it for a day or two, but then gives up.

 

Oh poor thing!! This tells you it's beyond what she can control, even though it's so sweet and a good sign that she wants to. My ds is like that, sort of blowing you off but also wanting to please, vulnerable you might say. I think it's part of his ASD2 (not 1) profile. There are some people who will go ASD for diagnosis who have enough social thinking to manipulate, be resistant, etc. So it's interesting to notice the social thinking involved in this vulnerability. 

So yes, see if you can do the online training from Kelly Mahler for interoception and start making something happen. The online training is something you can do *immediately* and it gives you enough conceptual understanding that you can *customize* and be creative with her. I think she even has some courses on pottying. Really though, it sounds like you need the overall, as the interoception issues are pervasive.

Fwiw, my ds didn't even START to have a clue about pottying till 4 ½ ish and he wasn't daytime dry mostly till 7. He just stopped night wetting at 14 ½. That's some serious angel choirs singing on that one!!! That's a LOT of years of laundry!!! LOL 

It's fine to do some mom management with schedules if you want, sure. There's a retained reflex (spinal galant) that can affect it. They tend to wait until age 5 to treat retained reflexes, but you might research them and just see. The spinal galant is super easy to treat, so you could try doing it and see if it helps at all. We did other things (modulated music, listening therapies, etc.) but they're all just kind of rabbit trails in my book. Interoception work for the body awareness and TIME. With all the other stuff you have on your plate, does it MATTER? If you just put the pull ups on her and let it ride another 3-4 months, would it MATTER?  

I did do pottying on command with my ds. If he woke up from a nap, I took him to the potty right away and gave a verbal command. I don't think it's a problem to do that, nor did it become so helpful to him that he started going on his own. It was merely a convenience for me as something where I knew I could help catch it and did to make one less change/problem for me. The other time that is easy to catch is 20-30 minutes after they go to sleep. So you put them down then go back in and take them to potty. 

The interoception work is all games, activities you do together. As a homeschooler, you're going to find it quite natural/easy, and you can do all your kids together, which I WOULD. You can do one lesson in 15-20 minutes then reinforce it for the week. If you do that, in 16 weeks you've done everything in phase one (the overall body). If you want to go faster, do two body parts a week which means you're through it in 8 weeks. That means if you get the training and order the material, two months from now you could be in a different place for body awareness. It's pretty amazing.

Edited August 16, 2023 by PeterPan

[PeterPan]

9 hours ago, Katy said:

. And don't tell me she read the IEP meeting notes and didn't pick up on the probability of autism and the need for bathroom help there.

I'm losing track here. You have an IEP but your disabling condition is not autism?? You have an MD diagnosis. The school is just giving you the run around. You have the legal right to file a dispute and compel THEM to pay for the 3rd party private evals at a place you agree with and get this done. That is just hogwash.

And no, it's not reasonable to expect them to infer things from meeting notes. They're busy. If it's not in the IEP and agreed to, it's not surprising it's not happening. Everything is funding. The disabling condition in the IEP drives a tier of funding and everything is driven by $$.

It's not that everyone with an MD diagnosis of autism needs/gets an educational diagnosis, but it sounds like your dd should have. So if they botched that and punted because they aren't trained, you can file a dispute and force their hand. 

After how many years doing this, I'm not a nice person anymore, sigh. Now thankfully our school district hired more people and has made a lot of effort. Some districts actually have ADOS trained teams!!! But yeah, I'm not even trust but verify. I only want to know what the law is. What does your state law say about the legal definition of autism and what guidance does your dept of ed issue for criteria to get that as your disabling condition. Do you have enough evidence (which you do) to warrant 3rd party evals and a dispute. Just the law. Unless it doesn't get you anything, kwim? If your disabling condition is autism in the IEP, does anything CHANGE? 

Edited August 16, 2023 by PeterPan

[PeterPan]

9 hours ago, Katy said:

a bit premature

C section or birth canal? Both ways can have retained reflexes, but c section are especially prone because the dc isn't using certain birth movement reflexes to get through the birth canal. My ds was born very FAST because he was so big, and same deal they aren't necessarily using those reflexes to twist and turn and get through the birth canal. Being premature/small can also be a path that.

My ds was downright FERAL before we got his reflexes integrated. Our experience was so profound with just one month of working on retained reflexes that I would suggest getting some help on that would be worth paying privately for. Pyramid of Potential has a dvd/online video you can buy. The PT we were using used their system and it got us a lot of the way there. Like he went from FERAL to tamed cat in a month. Nobody could believe it. And that video is under $60 I think. 

If you can make an OT eval happen (which it's really pissy that you supposedly can't since you HAVE an MD diagnosis), you might look for an OT trained in MNRI. It's the most gentle system and the last one we used. Apparently we were very set in or something, haha. We'd make progress and then he'd grow or change and need more work. MNRI is not easy to get trained on yourself, whereas Pyramid of Potential you can just buy the video and do something. Pretty much you'll know when the exercise is needed because it will annoy the tar out of them. 😉 So maybe pick 3-4 and just work on them.

By feral, I mean like uncontrollable, wild behavior. If we tried waiting somewhere, he would JUMP on my back. He'd be all over the room. He was almost impossible to work with and only in the gymnastics program did he look normal, haha. He was destroying my furniture ramming into it sensory seeking and nothing we ever did was enough. One month of reflex work and he walked in to the clinic, stood like a normal person, and sat down by the PT and let her touch him. Feral to tame cat.

If you want a laugh, @kbutton met my ds and she was like "Wow, what you live with." That's when I realized it was not normal. 🤣 I hadn't had a boy before, so I just thought oh maybe that's how boys are. 😂  They literally strapped my ds to the chair for years doing speech therapy. After we did the reflex work, they didn't have to strap him down anymore. 

Edited August 16, 2023 by PeterPan

[EKS]

On 8/14/2023 at 3:25 PM, Katy said:

Still slides are one of her favorite obsessions.

As an aside:  I read some theory somewhere that obsessions in children (and perhaps everyone) can originate from fear.

(This idea interested me because my younger son has been obsessed with cars forever.  When he was maybe 2yo, we went to a parade where there were these modified cars that bounced up and down and made loud noises, and he totally freaked out.  I've wondered since finding out about this obsession/fear thing whether the two were connected.)

[kbutton]

1 hour ago, PeterPan said:

 

If you want a laugh, @kbutton met my ds and she was like "Wow, what you live with." That's when I realized it was not normal. 🤣 I hadn't had a boy before, so I just thought oh maybe that's how boys are. 😂  

Yep! 😂

17 minutes ago, EKS said:

As an aside:  I read some theory somewhere that obsessions in children (and perhaps everyone) can originate from fear.

(This idea interested me because my younger son has been obsessed with cars forever.  When he was maybe 2yo, we went to a parade where there were these modified cars that bounced up and down and made loud noises, and he totally freaked out.  I've wondered since finding out about this obsession/fear thing whether the two were connected.)

Sometimes obsessions are just obsessions, but a relative has/had a weird obsession that could be directly tied to an adverse event in the past, and she put one of my kids’ lives in danger over it (he was uniquely vulnerable, and after being weird but not alarming about this with our older one, she got bolder). She would wait until we were out of the room to focus on this obsession. I am being vague because it’s really specific to my family, and I’ve told people about it IRL. She likely has a laundry list of diagnoses if she were to be re-evaluated by someone that works with adults, and ASD and borderline would probably both be on there.

It was not cool—it was totally a safety issue related to food.

[Katy]

7 hours ago, PeterPan said:

You might look up the SPARK program and participate in that once she gets diagnosed. Your ped could do a referral for genetics also to look for syndromal things. If there's something going on that affects more parts, you might as well know. SPARK lets you know if they find something syndromal that is known, but other than that it's just something to participate in. They're becoming a clearinghouse, a one stop shop for researchers to gain participants, and the studies are pretty interesting. You can even make little bits of money, haha, like $10 amazon gift cards. And it's just plain interesting. 

A doctor's diagnosis is enough to get you participating in SPARK. I'm surprised your insurance is holding back if you have an MD diagnosis. And your MD diagnosis should be enough evidence to start the IEP process through the schools. It is federal law that the ps in the district of residence is required to identify students with disabilities affecting their ability to access their education. So if there is *funding* that comes with getting an IEP, you already have enough evidence to fight for that. The ps might *want* you to get the psych diagnosis done privately but that isn't the law. And it's federal law, not state. 

That only matters if your state has funding for kids with an autism diagnosis in that window from 3-5. Remember you have EI (early intervention) funding from infant to 3 and you have services at 5 with school. So some states have options in that window, which is where you are. If you have an MD diagnosis, you have a diagnosis. Don't even get me started on psychs anyway... 

I'm surprised your insurance cannot be compelled to pay for services if the MD diagnosed and wrote referrals. 

What did you say your wait is? You're within a few months? And is this an autism school, someone familiar with girl autism, or a children's hospital that is going to give you the run around? Around here psych evals are such a hot mess. The children's hospital is a teaching school and they tend to shaft people the most. Private evals at an autism school or a clinic specializing in autism where they see more girls are more helpful.

Sounds like you have a lot on your plate! Sometimes it's hard to know what is most important, sigh, the social or the impulsivity or the sensory or language or what. We paid for a behaviorist ourselves for a while before we got our funding. It at least gave me someone to talk with so I could know if I was going crazy, lol. 

On the plus side, while things were terribly hairy at 4/5/6/7/8/9/10, now at almost 15 life is pretty good! Things are coming together, the services, all the work. So it's not bad FOREVER, if that makes sense. Your dd gives herself concussions. My ds gave *me* multiple concussions. Like I said, life was pretty hairy. Got pneumonia and developed asthma going through all the legal fights to get access to funding, sigh. But now, life is pretty good. 

So hang tight, be patient, keep working. It does get better.

6 hours ago, PeterPan said:

I'm losing track here. You have an IEP but your disabling condition is not autism?? You have an MD diagnosis. The school is just giving you the run around. You have the legal right to file a dispute and compel THEM to pay for the 3rd party private evals at a place you agree with and get this done. That is just hogwash.

And no, it's not reasonable to expect them to infer things from meeting notes. They're busy. If it's not in the IEP and agreed to, it's not surprising it's not happening. Everything is funding. The disabling condition in the IEP drives a tier of funding and everything is driven by $$.

It's not that everyone with an MD diagnosis of autism needs/gets an educational diagnosis, but it sounds like your dd should have. So if they botched that and punted because they aren't trained, you can file a dispute and force their hand. 

After how many years doing this, I'm not a nice person anymore, sigh. Now thankfully our school district hired more people and has made a lot of effort. Some districts actually have ADOS trained teams!!! But yeah, I'm not even trust but verify. I only want to know what the law is. What does your state law say about the legal definition of autism and what guidance does your dept of ed issue for criteria to get that as your disabling condition. Do you have enough evidence (which you do) to warrant 3rd party evals and a dispute. Just the law. Unless it doesn't get you anything, kwim? If your disabling condition is autism in the IEP, does anything CHANGE? 

There are genetic syndromes that cause autism? I wasn’t aware of that, only that it runs in families. I’ll ask at her next ped appointment. The genetic testing of DS5 had to do with a couple physical signs as well as background knowledge of his bio family history. It came back normal. 

I am pretty new to the IEP thing. We homeschooled our older kids (though had foster kids in public schools) until the pandemic trapped me in the house for years. DS5 has vision issues that were not well accommodated in the state we were in so we moved to a state that we knew was really good with vision impaired students. And it was clear that as much as I could research about teaching a vision impaired child I am not a vision teacher or vision therapist. I know very little about orientation. He needed school. He automatically qualified due to his vision diagnosis. 

DD4 however, her behavior was mild enough at home that some family members who only saw her on FaceTime thought I was nuts and borrowing trouble. She’s lovely at home where everything is predictable and everyone dotes on her as the baby. But once we moved and we got a new pediatrician it was like a switch flipped. At her first appointment she showed every sign of autism she’s ever had. Times twelve. The pediatrician was repeatedly offering me condolences and commenting on how full my hands are. But the pediatrician also said in this state she’s not allowed to diagnose autism. Only a few specialists like developmental psychiatrists are allowed to. But then a bunch of them retired or died during the pandemic so now there’s a huge backlog. 

The good news is she still qualified for an IEP in preschool in a 4 days a week, few hours a day program she needed 1:1 attention at all times. They are not allowed to say all of these symptoms and delays connected to autism are autism, but they were able to provide services. And her classroom teacher had a special ed graduate degree and some further training in preschool age kids. She saw all the same behaviors I did and thought DD4 had a photographic memory and, “She’s the happiest child I’ve ever met.”

But our private insurance won’t pay for any therapies without an autism diagnosis. From a specialist. Well that’s not true. It will pay for 6 sessions of speech or physical or occupational therapy a year. Pick one. 🙄 

6 hours ago, PeterPan said:

C section or birth canal? Both ways can have retained reflexes, but c section are especially prone because the dc isn't using certain birth movement reflexes to get through the birth canal. My ds was born very FAST because he was so big, and same deal they aren't necessarily using those reflexes to twist and turn and get through the birth canal. Being premature/small can also be a path that.

My ds was downright FERAL before we got his reflexes integrated. Our experience was so profound with just one month of working on retained reflexes that I would suggest getting some help on that would be worth paying privately for. Pyramid of Potential has a dvd/online video you can buy. The PT we were using used their system and it got us a lot of the way there. Like he went from FERAL to tamed cat in a month. Nobody could believe it. And that video is under $60 I think. 

If you can make an OT eval happen (which it's really pissy that you supposedly can't since you HAVE an MD diagnosis), you might look for an OT trained in MNRI. It's the most gentle system and the last one we used. Apparently we were very set in or something, haha. We'd make progress and then he'd grow or change and need more work. MNRI is not easy to get trained on yourself, whereas Pyramid of Potential you can just buy the video and do something. Pretty much you'll know when the exercise is needed because it will annoy the tar out of them. 😉 So maybe pick 3-4 and just work on them.

By feral, I mean like uncontrollable, wild behavior. If we tried waiting somewhere, he would JUMP on my back. He'd be all over the room. He was almost impossible to work with and only in the gymnastics program did he look normal, haha. He was destroying my furniture ramming into it sensory seeking and nothing we ever did was enough. One month of reflex work and he walked in to the clinic, stood like a normal person, and sat down by the PT and let her touch him. Feral to tame cat.

If you want a laugh, @kbutton met my ds and she was like "Wow, what you live with." That's when I realized it was not normal. 🤣 I hadn't had a boy before, so I just thought oh maybe that's how boys are. 😂  They literally strapped my ds to the chair for years doing speech therapy. After we did the reflex work, they didn't have to strap him down anymore. 

It was both a fast and slow vaginal birth. We had a near miss car accident a few days before my third trimester started. Belly hit the seat belt and I never stopped having contractions after that. I sat at 3-4 cm and 4 minutes apart for 6 weeks. Then I started having back contractions and so I went in for a check and as the doctor walked in my water broke. She was born less than two hours later with less than 10 minutes of pushing. But she had this perfect cone head, I assume from all those weeks of contractions. 
 

I’ll look into retained reflexes. Thank you so much. 

[PeterPan]

8 hours ago, Katy said:

genetic syndromes that cause autism

They've identified HUNDREDS of genes and yes some things are syndromes. If they've already tested one of your kids, then they probably looked for common/known issues (seizures, etc.). SPARK is free.

8 hours ago, Katy said:

in this state

Waits are long everywhere, but still you might try out of state. Or would your insurance not cover it then? Sigh. 

8 hours ago, Katy said:

a near miss car accident

Did you ever do trauma release for *yourself* from that? Some people release tension naturally (crying, shaking, etc.) and some people need a little more effort. The body stores sensory memory and it does not have to be part of declarative memory. So yes, in theory she could have some sensory memory of that experience. Maybe not, but maybe. It's one of those where if you researched TRE (trauma release exercises) and could do it for free, it would be interesting to see what happens. There's not an age minimum, but it is kind of an odd, effortful thing to do. I've linked videos in the past to show how. Levine has some tapping exercises that are much simpler that she could do. You basically just tap a body part and say a little mantra ("This is my ___, it's a part of me, I own it.") 

There's a lot of overlap with trauma, which causes dissociation and body/mind disconnectedness, and interoception. Someone could have *both* going on. And doing the simpler trauma things can unpeel some of the layers and leave you with more run of the mill interoception issues. They sort of overlap but the interoception work may go better if you deal directly with potential trauma dissociation first. It's something OTs are learning more about too. And when they talk about trauma, it's going to be anything where the body thought it was in mortal danger. It could be she was developed enough that a cascade of sensations of being in mortal danger occurred, hence the trauma. 

Not something to feel guilty over or fret over, just saying it's a tool in your toolbox, a free thing to try. It can even be a little game, and who knows what it could unwrap.