Our behavior therapist constantly reminds me of this. . . always asks how his sleep patterns are (and eating, because he is a horrible eater). Tired, hungry typical developing kiddos are harder to manage. . . add in the challenges from non-typical brain wiring and you're going to have more issues. DS was having a patch of rough behavior a few weeks ago and BT was here on a home visit. He had an outburst that she handled for me, and could tell I was discouraged. . . reminded me that he had been sick the last week, and though better, was likely still tired and drained from being up in the night, etc, and had not eaten well. She thought things would even out in a few days. . . by Friday when she called, he was back to a more even keel. He also had some rough patches with the long weekend. Disruptions in schedule are hard for these kids. I tend to always think meds are failing, we need more intervention, etc. . . and she comes in and gently reminds me of the obvious. Ha ha. Thankful for her gentle presence. . . I tend to make things more complicated at times.

Yes on the data. Dr. made me do 3 weeks of behavior/ eat/ sleep logs before we could change the first dose. We took very detailed data of every behavior, everything he ate, how fast he fell asleep, if he woke, how long he slept. It was really good and told us tons. Especially when we changed doses and things settled down. It was quite a ride, though.

Have you tried Concerta (long acting Ritalin) with a booster of short acting in the afternoon. This seems to be the magic bullet for many, and ds's dr.'s goal for him when he gets big enough for the XR. Right now he get 5 mg of short acting at 7, 2.5 at 11-12, and 2.5 at 3-4. It is working well, but a pain to get it in him. Sometimes we skip the 4 pm when we don't have evening activities. He actually sleeps worse on these days. So upside down but it is the case for ds. I hope you figure something out that works. It has been a game changer here.

My son is in the Play Project if anyone wants to know about it. It has been life changing. Our Play Consultant is a trainer for Dr. Solomon and is outstanding. She has taught me so much.

Mine too. Almost exact scenario. These people don't hand out dx's unwarrented.

I agree with the recommendation of an AAC device to open doors of communication. My little guy with Apraxia and a high IQ has only been using one at school once a week for 3 weeks, and he was putting together 5 word sentences with proper grammatical syntax on Wednesday. Needless to say, we are pursuing funding for one for full ti.e use.

This, this, and this again. This is what the behavior counselor has done for me. . . she has teased out the behavior, helped me to understand it, given me tools to head it off, redirect, etc. Her stuff is magical. She has helped me with appropriate consequences too, when all the tools fail, but that is rare these days. There is one area where all of the strategies are failing right now, and she is coming out next week to see if she can figure it out. Hoping to set up a scenario to get the behavior so she can observe it. She sees things I don't. She has taught me to keep things from escalating to where we need consequences. KWIM? So when we used to spend several hours every day dealing with consequences, physical behavior, etc, now we only have 1 or 2 times a week he even gets a time out. But, as the behavior counselor says, it takes lots of finesse and you have to be on your game. It is exhausting, but it sure is better than getting hit, bit, and scratched daily. And the only behavior report we have had from school so far is he got in trouble for kissing a girl. Ha ha. He's a lover, not a fighter. . . WHEN he is regulated and his mind is settled. He is 4.5, btw.

As far as ODD, my son could have easily pushed over to this dx. For us, that dx doesn't matter, for whether he has it or not, we are coming at his behavior challenges the same way. It isn't like we would change what we are doing because they slap 3 more letters on him. So for him, ADHD, Anxiety NOS, Apraxia, SPD, we are in weekly contact with his behavior counselor, SN preschool 4 days a week, Speech 2x a week, OT 1 x a week. He is a complex and challenging kiddo. . . but he is doing great with the right interventions, meds, supports, therapies, etc. I cannot say enough about good behavior support. It has been LIFE CHANGING here.

And if you do the research you will find that unmedicated kids with ADHD are 5x more likely to become addicts when they are older because they turn to self medicate to control it. . . my brother and my friend's son are both addicts BECAUSE they were not medicated as children. My brother started drinking at 13 because he said it settled his brain. I know it is upsidedown from what you think. I thought it too. I said no way to meds because I have a history of addiction in my family. . . then they pulled out the stats on that one.

Native Remedies Tic Tamer worked wonders here for a PANDAS episode.

Erased for privacy.

I will add that it may NOT be ASD, but WILL require in depth evals to sort it out, because it IS SOMETHING. Ask me how I know. . . we just got through an EPIC fall of intense evals. . . dev ped, psych, and school district for IEP. It was intense and painful, but we got answers, formulated a plan, and ds, who turned 4 in Aug, is THRIVING now that we know what we are dealing with and have the appropriate interventions. He is a different kid. He presented VERY MUCH like your ds, and he does not have ASD.

We may still need to treat the anxiety with a specific med, but stimulant meds have decreased it, so before we add another script, we are trying behavioral and coping strategies first. I am not sure if they would treat anxiety with meds in one as young as ds. Anyone know? DS is 4.

Decrease in anxiety here with just traditional meds. . .because he can now filter the stimuli coming at him, and his brain is more organized so he responds to coping strategies better. He is also sleeping better/ going to sleep faster which is helping him be better regulated. This is NOT always the case. Dr. said he was classic case for responding well to meds and he was right. We are still unpacking behavior with his behavior counselor because behavior patterns get set in stone in these kiddos, but take a long time to undo. And behavior is still behavior, no matter the reason for it. He is learning new patterns, but it is SLOW going.

This is really good advice. Often the first few days are REALLY great followed by a settling in period. . . we were told that it takes 10 days to see if a dose is right. That seems to be about the time it takes them to adjust and settle . . . and there could be several cycles of adjust and settle before you hit that sweet spot.

Meds will not make the behavior go away. . . but they will make him more receptive to teaching him appropriate behavior. For most kids with adhd, the world is coming at them at mach 3 speed with no ability to filter. . . once on meds, their brain is better organized which makes them more teachable. It does not, however, make the years of bad habits disappear. That takes work and skilled experts to help you unpack and rewire. Glad you are getting some answers.

And sometimes they are whacked out for no reason at all. At least when it is Sunday afternoon and he is a basket case we can blame church, or Thursday afternoon we can blame a 3 hr trip to speech- his BT came Thursday afternoon and she got to deal with him. . . Lucky her. Anyway, today, there is nothing to blame his whack-out-ness. It just is . . .

Yep, my dude with Apraxia balks at prompting for sounds/words he thinks he knows. And he is still FAR from having g age appropriate speech. We brought our behavior therapist to speech therapy and it has made a WORLD of difference in his compliance there. The woman (BT) is a miracle worker. So, I agree with OhE that behavior support might be your next step.

Yea, Nature Girl. She is gonna do great because you have done such a great job advocating for her so far. Hope it continues to be a good experience!!! Go Anna go!!!

Oh this, this, this, and more this. It makes me a raging lunatic when people don't respect what is inside my son. Actually, the only real person who TOTALLY gets him is his BT. If I could have a dollar for every time she has said "he is smart and can connect the dots here- do not let anyone coddle him with this. He is capable!!!!!!" Well I would be rich. But, yes the tenancy is to coddle and tiptoe. Makes me so mad.

Oh my word, this is so totally awesome. I am so happy that your little guy is getting this. And I am so happy you are ahead of me a few years, paving the way, sharing the resources you discover, and helping those of us behind you a few years. The info you have imparted to me just this weekend alone is invaluable and may save me countless heartaches and $$$$$ in the future. Thanks so much for this as well. My little guy has just started to listen to audio books- he loves Little House on the Prairie and Ramona. It was actually you who inspired me to try AB with him in an effort to get more language in his head. Since he only has a 50 word vocabulary, what comes out does not reflect what is in there, but I want to continue filling his brain with good language. Yes you read that right, 50 words. He has gone from 5 to 50 this year, and about 40 of those since starting PROMPT! Woot woot. We are a couple of years from being able to prove a print disability, so I will file this info away.

Just a little different perspective. My oldest, not on the spectrum, but definitely extremely introverted with some quirks, just started college and this is orientation weekend where there is lots of forced fun. An assigned small group just for the weekend, lots of rah rah rah from upper class men volunteers. He wants nothing to do with any of it. He was supposed to attend a freshmen party Friday night and went to his sister's soccer game instead. Last night there were a bunch of other social things. He texted me and said he was hanging out with a friend who is a senior in his dorm. Point being, being forced to have artificial relationships is akin to nails on a chalkboard to him. But, when comfortable opportunities arise for him to engage socially he does ok. He is thinking about joining the pre-med club, playing intramural soccer and his buddy who is a junior is a disciple group leader so he may join that. These are all his choices, not forced upon him. I don't know if I would make it more of an issue if he were on the spectrum, but I do know stuff like that sucks the life out of him. So hopefully she will start making her own way with meaningful friendships made through preferred activities.

Accommodate her. That is really all I can say. Hanna Anderson makes the softest underwear in the world. They are wicked expensive, but they are worth it. Make sure everything she has feels right, down to her socks. It will take some doing, but if you can find 5 outfit and do lots of laundry it will simplify things. As for the issue itself, she may outgrow it. In time she may show more sensitivities. It is hard to say. Lots of docs won't dx sensory if there is nothing else going on. The thing is, there could be something else show up down the road. Time will tell. How is she with noise, lights, crowds? How is her social?

Me too. We would get along well IRL OhE. Lol. 😂

His appointment went well. The place was like a carnival. He was jumping around, climbing across the seats, etc, but he did let her look and even allowed the tech to get x-rays which is nothing short of a miracle. And of course the over stimulation there made him crash later. But, it provided the needed distraction for the exam. So we go the 28th of Sept for the procedure. We are going to try oral sedation first. If he doesn't do well, they will abort and we will do a general in Oct. Good thing- if he doesn't do well, they will subtract what we paid for the oral sedation from the price of the general so we won't be out more. It is super expensive, but there is no way it's getting done any other way. So, now to figure out prevention so this doesn't happen again. Thanks OhE for the tips about the calcium. Thanks for the stories of success. It makes me feel better about it. This poor kid. His genes just seem to give him no chance at anything. I feel so bad. When I told the dentist we have 8 kids, and only 3 fillings in 18+ years, she was shocked. So this is new. Oh and his BT is working on a plan for the day of. Heck, maybe she will just go with me she is so great with him. . . And great with me as well. 😂 There are days I could use behavior therapy- like when I was on the phone with the driver's Ed people the other day, my son came in and said, doesn't sound like you are toterateing stupid. 😂 Nope son, I am not.