People Experienced with ADHD

[JessinTX]

Hey y'all! I've been reading here for a long time but this is the first time I've posted.....

I'm wondering. For anyone that has a child diagnosed with ADHD - tell me what your child was like at age 4?

My dd4 is displaying what I feel might be signs of ADHD (has actually for a couple years) but then I think maybe she's just 4... and I'm paranoid because of things I know about her history (she was adopted), and we just have a mismatch in terms of temperament. 

So tell me looking back what did you notice about your ADHD kid at that age?

Jessica

[PeterPan]

Well both my dc are diagnosed ADHD (among other things) and at age 4, both were incredibly hyper. They were also really *well* behaved in settings where they needed to be. Well ds less so, haha. But seriously, I remember this point where I had ds in gymnastics and this other mom (actually a grandma) was like oh my g-ds are both so ADHD, that's why they're behaving that way. And I just had to laugh, because we knew my ds (who was being appropriately in the setting, obeying the teacher, etc.) was fine.

My big memory of my dd around that age is her being IN MOTION when I was reading to her. Her grandparents remember her the same way. She would run circles in the yard while I would read to her. My ds at that age would WEAR PEOPLE OUT with his need to move and go. So if you offered to go on a walk, you were going to be an hour, tromping through the woods, full bore. Just SO much energy. When he was 5 1/2 I started signing him up for sports and he was doing gymnastics, swim lessons, etc., all at a competitive level, several hours a day. It was CRAZY.

So fast forward a bit, and we got ds tested for retained primitive reflexes. Once we got those integrated, his body really calmed down. He's still considered ADHD, but that astonishing need to move calmed down. So that's something you could do now, learning about retained reflexes, testing, and working on them to integrate them. Some people will say 5, but hey go for it. 

I think also, to cover your butt, look for things you aren't considering necessarily, like food allergies, hearing loss, and trauma. Is she *self-aware*? Like does she measure pain accurately, dress appropriately, respond to sensory input typically, and say how she feels in order to self-advocate?

Edited April 12, 2020 by PeterPan

[PeterPan]

You didn't ask this, but meds at a young age are not completely unheard of. Rare, but not unheard of. You want to think about things like safety. Is she safe? How is her level of hyperactivity impacting her ability to do what she needs to do? In rare cases, it can be appropriate. However it would be good to look into all the causes. Also you can assume at least ADHD is going on and start reading about ADHD. There are some really good books, like SuperParenting ADHD. The studies show the best outcomes when parents get behavioral training before meds are begun. So there's definitely going to be stuff you can learn. 

But if there's more going on, complicating factors, other causes, you'd like to find them. Has she had SLP evals? Has she needed any therapies up to this point? 

[JessinTX]

45 minutes ago, PeterPan said:

My big memory of my dd around that age is her being IN MOTION when I was reading to her. Her grandparents remember her the same way. She would run circles in the yard while I would read to her. My ds at that age would WEAR PEOPLE OUT with his need to move and go. So if you offered to go on a walk, you were going to be an hour, tromping through the woods, full bore. Just SO much energy.

I totally identify with that. We read or when we're doing her preschool stuff and she is spinning, jumping, bouncing, under the table, ON the table (and we weren't even sitting at the table!). But you ask her a question and she's totally spot on - she's listening and she's retaining. We're a bit urban for walks in the woods, but she can be at the park for an hour or in the pool for 2 hours - running, climbing, jumping the entire time - and still have a fit when it's time to go home/go in. I hear talk about kids getting their energy out with plenty of outside time, but it just seems to make her MORE hyper. It certainly never seems to tire her out. She definitely wears people out. I describe being around her like being hit in the face with a tidal wave of energy. 

She is in gymnastics and quite good at it - I could see it becoming a more serious thing for her. She definitely has no fear. She is often one of the first to try a new skill or "trick" as she calls them. Her not being able to go to gymnastics the last several weeks has been very sad for us all. LOL. 

Hearing loss has been definitively ruled out, and because of the drugs she was exposed to is monitored every so often. She was somewhat language delayed and had evals and speech therapy when she was in her 2nd year, she was discharged at 28 mos because, at the re-eval, she tested at at 3 year old level. At this point I still think her language skills are advanced if anything. She constantly comes up with things that make DH and I look at each other and go 😲. I chalk up the language delay to some of the foster care crazy that she went through. Her fine motor skills were also somewhat delayed, and still come harder for her than other things. She's very bright and pretty precocious with a lot of things. Although the school would only consider her a 3yo because she has a mid fall bday - I started her on PK4 this year as she already seemed more than ready and with the PK curriculum we've used it's mostly been too easy for her - like she already knew what we were covering. Except learning to write letters - that's taken some practice but I don't think she's behind - just age-appropriate in that regard. And things like stringing beads or figuring out how to do clip-it activities with clothes pins a just a bit of a challenge - in a good way I think - I'm just saying she doesn't immediately catch it and breeze through like she does with gross motor or language or number activities. 

So yeah there was definitely some trauma - mostly disrupted attachment and a failed reunification with her bio. mom at 12-16 months (hence the language delays, although even prior to that she didn't start babbling like most babies.) I go back and forth about this related to her sleep issues. I've read that ADHD kids tend to be terrible sleepers, but maybe the fact that I'm still up in the middle of the night almost every night is because of security/attachment/trauma issues. Melatonin has been life changing in terms of getting her to go to sleep but not STAY asleep. 

I haven't seen anything that makes me think allergies.... except the hyperness - which from what I've read some people correlate to allergies to food dyes. 

She definitely has some sensory processing issues... but yeah she's aware. She's not getting naked in public or anything too crazy. Every microscopic scratch is like the end of the world and requires a band-aid but I think that's normal at this age. She is definitely rough though, and doesn't seem to realize her strength. She's safe, she's always hurting herself because she was leaping from the couch onto the coffee table and fell or was running and ran into a door frame kind of thing, but only once required an emergency trip to a dentist - mostly just bumps and bruises. The people and things around her safe - not so much always. She's constantly hurting one of us because she's just so dang impulsive and again rough. She'll leap on you out of the blue. Throw a ball at your face with no warning, etc. She's constantly breaking things, ripping them up, chewing them up. 

She definitely can express her feelings. And she has a lot of feelings about EVERYTHING. Her very favorite phrase of all is "But MOM, I just...." And at times she has straight up said "I don't know how to calm down." "I don't think I can be still." "I can't stop it." Things like that. And not always in a defiant way... sometimes she almost has a look on her face when she's saying these things like ... Help me!

The idea of retained reflexes is interesting. It's something I've heard of but I'm not very educated on it. I will for sure look into that. 

2 hours ago, PeterPan said:

 How is her level of hyperactivity impacting her ability to do what she needs to do?

This is my biggest concern. She loves to do school, but it's like a workout for me. She wants to jump on me, stand on my lap, hang off my back, etc. And she wants to tell me what to do. "No mom. Don't say it that way." "No mom. First we have to do...." "But mom, you forgot...." And since she was a toddler I've tried all the ideas under the sun that I've read here and elsewhere of how to set up expectations and activities so that she can entertain herself while I do school with her sister. Very little success. She constantly interrupts and and distracts by again bouncing and jumping all over the place, until she ends up in time out or in desperation I give her a tablet or turn on the TV. And even that only cuts the interruptions by maybe half. 

I'd always intended to homeschool her but she got an opportunity to attend a new school that opened here. It's a Spanish-English dual language immersion school for PK-2. Her cultural heritage is Mexican-American and her biological family whom she still has relationships with are all bilingual so it's important to us that she be bilingual, and this just seemed like such a great way to do that. We will likely resume homeschooling after 1st or 2nd grade. Definitely before all that high stakes testing nonsense starts. We applied and she was accepted for next year, but I know that a teacher dealing with 15 (or maybe more??) 4-5 year olds is not going to deal this behavior. Can't deal with it and work around it the way I can in a one on one situation. She is very social though so maybe the social aspect of seeing that the other kids are not acting that way will work on her and she'll want to fit in and so will modulate her impulses... or she'll end up being the kid that's always in trouble. And I hate that for her. She's very perceptive and sensitive when she feels like someone is mad at her or she's in trouble. I do not want learning to become associated with negativity for her. I also don't want her to miss out on a great opportunity because she can't sit the **** down. 🥵

So that's my novel. Thanks for your input. If you have anymore after my answers to your questions, please let me know. 

[PeterPan]

2 hours ago, JessinTX said:

And things like stringing beads or figuring out how to do clip-it activities with clothes pins a just a bit of a challenge

So I would bring this up when you get the OT eval.

2 hours ago, JessinTX said:

She definitely has some sensory processing issues... but yeah she's aware.

 

2 hours ago, JessinTX said:

"I don't know how to calm down."

So a good OT can deal with all those things. The ALERT program is used at this age. You can google it. They're going to use really simple terminology for how your motor runs. You said she's aware, but here's an article explaining what you're looking for https://www.kelly-mahler.com/what-is-interoception/  She's aware that she's not able to calm her body, but she doesn't know her tools yet. 

2 hours ago, JessinTX said:

just a bit of a challenge - in a good way I think

When my dd was young, I kind of normalized everything. I didn't want to be one of those mothers who worried, so I was like fine, that's her normal, don't worry about stuff. And I would say things that were hard for her or out of range developmentally, and then I'd caveat it like oh but she does this other thing really well or that's just not her personality or whatever. Now I'm more b&w, looking at the developmental charts, and if it's off developmentally, then I'm concerned.

So just my two cents is that, given that she had these fetal exposures, it's not shocking she's having a hard time. She's dealing with whatever she got genetically (ie. the reason her bio parents were doing things) and the consequences of the exposures. I think this is a situation where you'd like more tools. You're probably going to need some meds, yes. But I think you're also going to want to be pushing your ped for referrals that get you access to more tools. So behavioral help, social thinking, OT, self-regulation. There are some really great tools out there. If you're in an urban area, you might see what the children's hospital near you has. See if they have something like a behavioral health clinic. I don't know if every children's hospital has them, but yours might. And that type of clinic is sort of the gateway to all the departments. They can take you in and get you access to EVERYTHING. 

If you were take her to the ps, yes they would get her some OT, bring in some behavioral supports, use some programs like ALERT, absolutely. I think as far as meds, you could have that discussion with your doctor. Me personally, I would probably want to check about retained reflexes and get those integrated first. Has she been a danger to herself because of her impulsivity? There are kids, even at this age, who are unsafe due to their ADHD. I would not hesitate to medicate for safety. However if it was *tolerable* with the gymnastics, I would work on things you can do at home to get her more input, work on the retained reflexes, and see where you're at in a few months. 

I feel really bad that she recognizes she can't calm her body. That must be hard to watch. What tools have you taught her for that? Have you looked into mindfulness? I know you think she's aware, but I think, giving her strong language skills and girl readiness, that she might really do well with interoception work. I think it could take her to the next level with understanding what her body is doing and finding things that help her. She needs to make a direct link (when I do this, I feel more calm, when I do this I feel...). You could even start with something now, like challenging her to find ways to lower her heart rate. Just give her the challenge and see what she can figure out. Or have you seen the Mightier software? That did wonders for my ds on heart rate. It's not going to be *everything* you need, but it's something you could do now that could help *some*.

Mightier: Homewww.mightier.com

2 hours ago, JessinTX said:

Melatonin has been life changing in terms of getting her to go to sleep but not STAY asleep. 

Oh dear, sleep issues are hard. And if she's having trouble winding down, that also makes sense. If you want to get in the weeds, you can run genetics on her. My ds had a TPH2 defect that was affecting conversion of tryptophan to 5HTP. 5HTP is the precursor to serotonin and melatonin. He also had a vitamin d receptor defect we were able to treat. So there could be some identifiable, treatable pieces there if she's not getting to sleep properly. Also the body scans that you would do as part of interoception work can bump her EF (executive function) 30% and be calming. She might, as she works on self-awareness, realize she has some things that make her feel good that would be calming.

There's another program, Zones of Regulation, that they use after ALERT. You can look into it. She's young, but you can just keep your ear to the ground, google, start learning, kwim? They have terrific conferences, but also there are FB groups, etc. 

So what usually happens is that a dc with straight ADHD, no ASD, only the ADHD and maybe some anxiety, will get instruction in the Zones of Regulation and maybe also Social Thinking (We Thinkers 1/2, etc.) and that plus the meds can really be amazing. Those kids get the instruction, and with the meds in their system things click and they can just DO it. We did group social skills classes at a local clinic where they would go through Zones, various Social Thinking curricula, etc. and that's how it was for the straight ADHD kids, that good explicit instruction like that just made it click. You get in their heads, they figure it out, and they're like OH! Now my ds, he's ASD2, so you can talk till your blue and he doesn't figure it out, lol. But yes, for your dd, definitely be looking into these programs and how you could connect with them. You're probably going to have a variety of options, so it's just putting out your feelings, seeing what those options are. And I would be looking for a mix like that, some group work, someone who's helping you (a behaviorist), talking with your doctor, an OT, a team approach. Build out a team. 

Has she had a psych eval yet? Usually people get ADHD diagnosed by a psych as well as their ped. The ped is good for the meds but the psych, especially if you got someone experienced with adoptions, ACE (adverse childhood experiences), fetal exposures, etc. could really give you some good guidance. I wouldn't think of it as all yes/no. Like everything is great with motor or nothing is wrong. My ds was winning at the state level in gymnastics and his VMI (visual motor integration) was bunk and needed OT. I would expect odd holes, things you're catching. I would expect her to seem like some kids you hear about and different because her experiences are more complex. And my advice would be to keep an eye on holes, things that are not on track, because they'll come back to bite you. Everything updated, everything on track, holes consistently filled in, and a team helping you bring in these cognitive and behavioral strategies and instructions. You can do it yourself, but it will be fatiguing. If you can get access to clinics that have these people, build a team, ask for help.

2 hours ago, JessinTX said:

I know that a teacher dealing with 15 (or maybe more??) 4-5 year olds is not going to deal this behavior.

Ok, so the irony is that she might actually do WELL in school! I was going to ask how she was doing, but you're saying it starts in the fall? So my ds at that age sat in on the ps for a bit. It was novel and he held it together. Then when we left and went to the park he hit children and was a mess. So at the very least, I would expect that she, being very bright and interested, is likely to engage with the novelty and stimulation. And her ADHD is likely to respond WELL to the structure and clear expectations. The structure of school is predictable and high. Is this a ps? If so, then you have the federal right to request evals. You could also choose to wait, see what happens, and let them drive it depending on what they see. Some ADHD kids (not all, some) have trouble with foreign languages. So if she's having trouble because of the language, that could be an issue. But maybe it will go great! I wouldn't assume it won't and I wouldn't assume she'll have these same behaviors. She has the behaviors at home because she CAN. She's likely to hold it together when she goes to school, especially during the honeymoon phase. Once she gets more comfortable (at least 6-8 weeks in), that may change. At that point, she may start saying she's bored or doesn't want to go or having resistant behaviors. But initially, I'll bet she enjoys the stimulation and does well in the structure.

If you want her to do well in that setting, then I think bringing in the self-regulation instruction, the self-awareness, the calming strategies, and maybe some social thinking could all be good. We Thinkers 1 would be the right level for her. For the calming strategies, be very methodical. It's custom work, with everyone's answers a little different. So you spend the week noticing hands and then you go ok when your hands are fidgety, what makes them feel more calm? And try things and help her make her own list. The interoception materials would help you go through that. But maybe if you skim it you can figure it out together yourself. 

3 hours ago, JessinTX said:

I also don't want her to miss out on a great opportunity because she can't sit the **** down. 🥵

Then I would start with the retained reflexes. Literally some of them make it uncomfortable to sit down. https://www.pyramidofpotential.com/parents/  The PT we used was trained in Pyramid of Potential's approach to reflexes, so those are the exercises we did. Someone else here on the boards bought this DVD and said it had great content for learning how to test and integrate the reflexes. If you want a free option https://www.brmtusa.com/what-are-reflexes  has a list and you can go through them on youtube, looking for tests and exercises. The exercises from PoP were different from what I've seen on youtube and they worked well for us. 

I will tell you that when we started working on retained reflexes ds' behavior actually got WORSE for a little while. Then, as they integrated, it was like MAGIC and his behavior got better. When I took him to the PT for the first appointment to see if she could help, he was literally ON MY BACK in the waiting room. Nobody could work with him. Once they integrated, we would go in and he could just sit/stand like a human. Imagine a 7/8 yo very athletic boy jumping on your back because his system is so hyper, so constantly on alert. It was crazy. The PT started calling people over to look at him, because the progress was so unbelievable. And that was just doing the exercises to integrate reflexes. We did them 3-4 times a day for maybe 10 minutes at a time. More was more better. So it was a real focus, a real effort, but big gains.

Did someone mention Dianne Craft? I met her at a conference. If she has exercises, fine whatever. I'm not saying what you should use, just what worked for us. She is trying to pull together a lot of important areas in her materials, so I think that's the big value is seeing how things connect. You could see a lot of OTs or doctors and never have them address this incredibly obvious, important area. We went through multiple OTs who had various levels of training in various systems. We had a phd OT who was CLUELESS on retained reflexes, behavior, VMI affect handwriting (even though she was supposed to be working on handwriting), etc. I mean, sometimes I just shake my head at what is going on in therapy, sigh. 

So keep us posted. I think you can make progress. I think you're right to be concerned and building out a team. She has enough factors going on that she probably has some things here, some things there that need some support. I don't think anybody here is like chicken little the sky is falling. You are seeing a lot of strengths but some particular things are giving her trouble. So I think some really targeted, smart intervention here, maybe also some meds at some point, could get you a long way. But it would be interesting to see how far the reflex work gets you.

[JessinTX]

1 hour ago, PeterPan said:

Is this a ps? If so, then you have the federal right to request evals. You could also choose to wait, see what happens, and let them drive it depending on what they see.

Oh heavens I don't think I would go down that road. It is a public school, but if it was that bad that she just couldn't function in the classroom without the teacher wanting to push her towards special education, then I think I'd just go back to homeschooling. A 504 plan with some minor accommodations maybe....

I have an older DD (bio) who is autistic and has a genetic disorder. We dealt with special ed. and evals and ARD meetings and all that all the way from PPCD until 7th grade when I just had enough. I didn't have it in me anymore to fight with them constantly to do the right evals, and provide the services that were on the IEP, and ya know actually attempt to educate her. And the OT and ST she did get were a joke. I had never imagined homeschooling until I just got to the point where I could not send her back to that school (for so many reasons that would take way too long to explain), and every other option we tried (district transfer, private schools were a dead end.) My BFF had been homeschooling her autistic son for a year or two at that point, and I just decided I couldn't do a worse job. In the end though, I wish we had started homeschooling so much sooner. In the six years we've been homeschooling she has learned to read, do basic math functions, so on. She's never going to be working at a high school level, but she does learn and makes progress little by little. Which the school had tried to convince me that I was expecting too much if I expected her to actually learn things. 

And some of the more recent crap that is going on with Texas and special education would make it even worse. They've put "unofficial" caps on the numbers of kids that can be enrolled in special ed and so it makes even getting a kid tested so hard. A couple years ago I had a kind of side job taking a couple of kids to school and picking up for a mom that ran an in-home daycare. The little girl was so funny and bright but struggled so much with her reading. She was threatened with being held back two years in a row (in first and second grade!). In trouble a lot (acting out because she was self-conscious.) Pretty clearly needed to be at least evaluated for learning disabilities. But the hoops that mom had to jump through and the amount of passing the buck that took place was ridiculous. It got to the point that she would tell me "I hate school. I'm stupid." In second grade! It broke my heart. That's when I started thinking that I would never send any of my kids to school. Cause this was supposedly one of the best schools in the district. 

Anyway  bottom line. BTDT with special education and have zero desire to go there again (maybe I have PTSD - LOL.) I would rather pursue evals and therapies clinically and go from there. 

We do have a very good children's hospital and a Child Study Center nearby. We actually already go to the CSC with my big girl. DD4 hasn't had any psych evals or anything yet. This is all stuff that's been in the back of my mind, and maybe more in the front of my mind for the last 2 or 3 months. 

I've strongly considered an OT eval. We had an OT consult with us a few times back when she was in ECI, but she always just said that we were on the right track (i.e. that we were already doing what she would recommend.) We do a lot of sensory diet stuff - heavy work, deep pressure, she has a weighted blanket, try to encourage safe & non-obnoxious ways to get plenty of proprioceptive and vestibular input. Although it never seems to be enough. We have an OT we really like for older DD, and the OT has joked about getting DD4 in the sensory gym - she may or may not have been doing somersaults over the backs of the chairs in the waiting room at the time. I've hesitated for reasons I don't really know - except maybe adding ONE MORE THING to the schedule. But I think talking this "out loud" with someone that has some expertise... it's time to go ahead.

2 hours ago, PeterPan said:

If you want to get in the weeds, you can run genetics on her. My ds had a TPH2 defect that was affecting conversion of tryptophan to 5HTP. 5HTP is the precursor to serotonin and melatonin. He also had a vitamin d receptor defect we were able to treat. So there could be some identifiable, treatable pieces there if she's not getting to sleep properly.

One of the things we have done just recently as far as "building a team" is get an consult with a sleep medicine clinic at the children's hospital. I just wanted to rule out any physical reason that could be preventing her from being able to sleep. Like this kind of thing. The doctor we spoke with (unfortunately it got turned into a phone consult - and she could not actually see DD) believes it's all behavioral and gave us those kinds of interventions to do. Things we've already done and did not work, but to be fair, it was before melatonin, so maybe it will work this time. If not, I may bring this up at the next follow-up in August. 

I appreciate the links - I've scanned them and will go back and look more closely at them all. We Thinkers looks very promising. We've been using a SE learning program, and it incorporates a lot of Zones of Regulation stuff, uses stories to illustrate things, which she loves, and seems to understand, but can't necessarily access the information when she needs to use it. KWIM. I have a beautiful Zones pocket chart thing I created, but it's not very useful because my older DD is either happy or sad. Nothing else - LOL. And DD4 is always in the green zone because I guess she's figured out that's the "right" answer regardless of what's actually going on. I've been screamed at "I am NOT in the red zone!" on more than one occasion.  We also do the usual things when she gets in that "I can't calm down!" state. Deep breaths, deep pressure, squeeze muscles and release. Sometimes it helps a little, sometimes she thinks it's all a big funny game and just keeps running around or whatever, and sometimes it becomes like a reason to fall apart and have a tantrum because I'm trying to make her come here and listen to me - which obviously is not the intended effect. So I need help here clearly. It's interesting you said Zones comes AFTER some of the other stuff - so maybe I'm over her head and need to start smaller.  The ALERT thing made me smile. I don't remember it being called that, but I definitely remember "How does your engine run" from some of the therapies my older DD did when she was little. I had completely forgotten about that. 

2 hours ago, PeterPan said:

I think you're right to be concerned and building out a team. She has enough factors going on that she probably has some things here, some things there that need some support.

Thank you for this... I don't want to create a problem that's not there when maybe she's just a strong-willed little girl who will one day rule the world, and I've read one too many articles about drug addicted babies and disrupted attachments. But it makes me feel like I'm not crazy for that gut feeling that something is off, and I really do need to start seeking more answers. 

[PeterPan]

4 hours ago, JessinTX said:

I didn't have it in me anymore to fight with them constantly to do the right evals, and provide the services that were on the IEP, and ya know actually attempt to educate her. And the OT and ST she did get were a joke.

I'm so sorry your school was not able to meet her needs. My ds has an IEP and we use it to take the state scholarship to get access to services privately. So we give up our FAPE and that money goes to private providers. 

 

4 hours ago, JessinTX said:

I just decided I couldn't do a worse job.

Yup. Some days I wonder, lol, but it's true. And yes, I think my ds would be like yours, not making progress and them saying it's just how it is. We have a lot of room in homeschooling to go back and focus on foundational things that got missed. (reflexes, narrative language, etc.) where they're like no, have to go forward, this is the goal, we're working on it even if it's not addressing the deeper needs.

4 hours ago, JessinTX said:

They've put "unofficial" caps on the numbers of kids that can be enrolled in special ed and so it makes even getting a kid tested so hard.

Oh my. Are they very overwhelmed? Evals alone are a federal right. I can see if they're quietly finding ways to avoiding writing IEPs, but I don't know how, legally, they just fail to do evals. They "don't find evidence" every time? Ugh. What a mess. Well if you can make private evals happen, that sounds like it's going to work out better. And, as you know, if the kid can sorta scoot by and "access his education" they're going to find a way to move on, say it's not their problem.

4 hours ago, JessinTX said:

We have an OT we really like for older DD,

Sounds good!!! I can see the one more thing, sigh. I don't know. I mean, you're talking to a woman who sent away her older dc early so she could deal with the needs of the younger. Juggling two at once is hard. But it sounds like you have the resources, the contacts. And I love that you've already done a lot with her! 

I can tell you on the psych evals that 6 was kind of the line where it switches over and more thorough testing happens. There can be reasons to test earlier, really good reasons, and maybe this is a case where you should. I think you'd find the psych you like and talk it through with them and defer to their judgment. If there are concerns *beyond* behavioral, that would be a reason.

It will be interesting to see where OT plus reflex work gets you. You could even have your older go back and do reflex work if she never did that. 

4 hours ago, JessinTX said:

The doctor we spoke with (unfortunately it got turned into a phone consult - and she could not actually see DD) believes it's all behavioral and gave us those kinds of interventions to do. Things we've already done and did not work, but to be fair, it was before melatonin, so maybe it will work this time. If not, I may bring this up at the next follow-up in August.

So around here, the hospitals when they run genetics are looking for very targeted things, like seizures, disorders that explain a list of symptoms, that kind of thing. When you say you want to look at genetics for mundane stuff like vitamin D and sleeping, I don't know that they're doing it. And it doesn't make sense to me, but I'm just saying my impression is they aren't doing it. There's a HUGE GAP between genetics and psychiatry and medical care still. Not always. Like cancer docs are using genetics to predict med responses, sure. And if you google genetics and sleep problems you're likely to find tons of studies. I get in even deeper in the weeds, because I'm looking at things like genetics and schizophrenia, genetics and covid responses of cytokine storm, etc. 

So that help is out there to be had, but the trick is to find the person doing it. Option one, pay $69 to 23andme and do it yourself. It's literally that easy if she can spit, boom done. Option two, there are occasion docs in big cities who are doing this. In our area, they'll be the person treating ASD, ADHD, etc. and they have a pretty big following, are hard to get into. I haven't tried one, because when I looked at the website there was more there than I could deal with. (do it my way, do all the testing I say, blah blah) So for me, the 23andme testing was so simple and gave me plenty of data. They don't test MAO (in case you're really interested in GAD=generalized anxiety disorder). But other than that, most of the time when I'm wanting to look up a gene I've just read about, a SNP for that gene or maybe several SNPs will have been run. So for $69 it's a lot of data. You just download it and run it through a $12 search engine, boom done, easy peasy. Well that and I ran it through knowyourgenetics.com (free) which cranks out a report on methylation.

But yeah, the filed is called neurogenomics and they just aren't doing it enough. To me it's where some of the most interesting answers are.

4 hours ago, JessinTX said:

seems to understand, but can't necessarily access the information when she needs to use it. KWIM. I have a beautiful Zones pocket chart thing I created, but it's not very useful because my older DD is either happy or sad. Nothing else - LOL. And DD4 is always in the green zone because I guess she's figured out that's the "right" answer regardless of what's actually going on. I've been screamed at "I am NOT in the red zone!" on more than one occasion.

So yes, what you're describing is kids who would benefit from working on interoception. And given that your older is HIGHLY ready to benefit from this, what you might do is go ahead and get the materials, do the online training (if money is flush), and do it with both. You know your older will benefit and be ready, and I think the 4 yo will just tag along at the level she's ready to take in. 

Interoception work was a big deal for us. It's a process that has phases, so there's your initial 8 week push and then applying it as they go deeper and deeper and make more connections and understand more. So I'm sitting here thinking about whether I could have done interoception work with my ds before his reflexes were integrated. His body was like a 4 alarm fire, very hard for him to deal with. But your dd might be ready. I think just work on getting both things going and see what happens. It will probably work out and be obvious what you should do.

4 hours ago, JessinTX said:

I don't want to create a problem that's not there when maybe she's just a strong-willed little girl who will one day rule the world, and I've read one too many articles about drug addicted babies and disrupted attachments. But it makes me feel like I'm not crazy for that gut feeling that something is off, and I really do need to start seeking more answers. 

Well I highly doubt you have time to make up problems that aren't there, lol. It's more like adding to the list these things that your gut is starting to see. And it might be that working on this with your younger is going to put you back in the loop on some new things that help both your kids! This interoception research is much, much newer. You can meet Kelly Mahler behind it when she's around speaking. She comes to OCALICON and does occasional workshops around the country. 

If your OT would get the interoception materials and use them with your dc, that might be brilliant. It sounds like she hasn't done interoception work yet, and so you as the customer pushing might be just the thing! You could write her now and see if she'd buy them. Or even offer to buy the materials and let her use them, kwim? She could get plugged in, do the online training, get prepped, and be ready to go. Or you do it yourself. It's really just a matter of time and who can make it happen. The materials are clearly structured, though there's stuff you need to print off. But also don't be afraid to just DO it. Kelly talks about this in the workshops, that she was taking a concept and applying it and you can too. The materials help, but once you wrap your brain around it you can't really screw it up. Anything you think up to do and explore and work on it will be fine. Having her materials just jump starts it and makes it faster.

Well good!! I think you've got good things coming. Between the reflex work, learning about interoception, and the possibility of an OT, you've got good tools here. It would be interesting to hear what reflexes she tests as still having. You could test your older as well. Did the OT ever do reflex work with her? Some OTs do, some don't. For whatever insane reason, they're not being taught to these OTs so it's extra stuff they have to learn later.

PS. if money is flush, you might like to pursue Mightier as well. I think it will be a good complement to the interoception work. It will be something you can make happen in a few days, as soon as the amazon order with the heart rate monitor comes in, kwim? It will get her juices flowing on self-regulation, and then you can come in with the bigger tool of interoception work. But the biofeedback with Mightier would be a fast start.

Edited April 13, 2020 by PeterPan

[PeterPan]

4 hours ago, JessinTX said:

maybe she's just a strong-willed little girl who will one day rule the world

Oh maybe, lol. I mean, it's not like they're mutually exclusive, lol. When my dd got to college, she found a whole compadre of ADHD and ADHD + kids who joked about ruling the world. She may turning out to have some astonishing strengths that can show better as her self-awareness and ability to make choices to help herself improve.

Fwiw, I want to make sure you understand I'm not anti meds or saying don't do meds. I want to be very clear on that. I'm only saying work on reflexes for 2 months. You can get them tested and get them mostly integrated in a month if she's really compliant. My ds was more like 6 weeks and then 2 weeks for good measure once he was compliant. It took us a month to get his body calm enough he could even comply and for us to figure out strategies to get his body calm enough to tolerate the inputs of the reflex exercises.

So I'm NOT saying that this should go on a year or two, kwim? You'd like to see the things you're trying WORKING. There's a lot of OT that has kind of vague promises. The stuff I'm talking about should not be vague. Reflex work should be visibly helping within two months (and worse in the meantime, letting you know you're on the right track, haha). The interoception work should be giving you evidence that it's connecting and clicking. 

I would not hesitate to talk to the ped about meds if safety is involved and I would not hesitate to have that talk if these things are *not* getting her ballpark closer. And if you do these interventions and they work and she still needs meds, again meds. There is no great soldier price for moms who put up with stuff, lol. We want answers that work, so we're just saying these are things to try to see if they address foundational issues, to see how far they get you. 

My dd's body calmed down enough that we didn't start meds till 16. She could have had them much sooner, and she was a pistol to work with. My ds is not a good candidate for meds because of his other issues (aggression, etc.), so that's a lot harder. Fortunately, his body calmed down a bit. I think see where you're at, take steps, see what happens. But I don't want you to think I'm saying not to talk with your doctor, not to pursue meds, because the older I get, the more I'm like let's get this done.

Total aside. The only thing I've seen that has any evidence as actually working is l-tyrosine. You could read about it, see what you think. I'm not saying you should, just that if that was your question (non-med options that actually work), that's about it. I mean, sure, remove dyes, eat more fruits & veges and grains like quinoia, add omega 3, blah blah. But if you've done all that, then l-tyrosine and meds. The study I read was comparing l-tyrosine to Vyvanse.

Edited April 13, 2020 by PeterPan

[JessinTX]

15 hours ago, PeterPan said:

Evals alone are a federal right. I can see if they're quietly finding ways to avoiding writing IEPs, but I don't know how, legally, they just fail to do evals. They "don't find evidence" every time? Ugh. What a mess.

You'd think the whole federal law thing would mean something but what I have learned is that a law is only as good as far as someone will enforce it. Basically they make teachers do so much crap before they are even allowed to refer for special ed... they have to first show that the child is "failing" or whatever for so long a period of time, and then do "intervention" like tutoring and pulling for extra help during periods of the day and keep data on  RTI. And I think there is like 2 or 3 levels of that that each have to last for like at least 90 days each or something. Oh and before we do an evaluation the parent needs to get appointment with a doctor or maybe a psych or whatever the diag decides the kid needs.  So basically by the time they do all that it's almost the end of the school year and they say they don't have time to do an eval this year - "let's see how he does in summer school" and next year it starts all over with a new teacher. They can drag it out for years that way sometimes. Especially for those kids whose parents don't know how to be persistent, or if they move around much at all. 

Then there are the parents they just patronize and blow off, and talk out of even asking for evals. Or they finally do the eval and then deny that they qualify based on some parameter that no one will spell out. But somehow the kid isn't impaired "enough" or some BS like that. 

Read this article if you want. This kid's story sort of illustrates how the state does this. Forewarning you may lose a little of your faith in humanity.  https://www.the74million.org/article/250000-kids-277-million-in-fines-its-been-3-years-since-feds-ordered-a-special-ed-reboot-in-texas-why-are-students-still-being-denied/

16 hours ago, PeterPan said:

Option one, pay $69 to 23andme and do it yourself. It's literally that easy if she can spit, boom done.

You know we've been talking about doing this anyway. We know and have a fair amount of information about her biological mother's family - especially compared to many other adoptive parents, and we have contact with people we could ask if we wanted to. But her biological father is basically unknown. So I think I'm really going to look into this. I'm just not sure about the privacy aspect of it. I see all these stories about people finding unknown siblings or parents that they didn't even know existed. How does that happen? Do you have to opt in to that? Not that I'm necessarily opposed to more of her family finding her, but.... I don't know it's sticky. 

 

[PeterPan]

7 hours ago, JessinTX said:

Basically they make teachers do so much crap before they are even allowed to refer for special ed..

Yes, I went through the IEP process with my ds and fought for 3 years to get his disabling condition changed to autism. Brought in lawyers, lots of stress. So yes, I'm familiar with RTI. So legally the parent has the right to make the request, but yes it sometimes ends up involving lawyers. The school technically can be compelled to fit RTI into the IEP process. They're basically finding excuses. It's ugly.

7 hours ago, JessinTX said:

I don't know it's sticky.

Yes, there's a way to opt out and yes it's sticky. Some people use other names. I agree it's the catch 22. There's another company that, for a higher price, is doing "whole genome" sequencing without attempting to make family connections. That would give you even a bit more data and would possibly skirt that problem. I think it was running maybe $350.

[Shoes+Ships+SealingWax]

Well, I’m definitely not “experienced” (my DS was just diagnosed ADHD last month) but at age 4 he was... relentless. SO energetic.

He was in 3hrs if soccer a week (with park play before & after), rollerblading once a week, I think gymnastics weekly, too? We had a trampoline he used all the time. I had discovered that if I wore out his brain his mind slowed down a bit so we started “school” early! I’d have him run up / down flights of stairs to burn energy during lessons.

The bigger issues were social. He was just so full-on, it was overwhelming *even to other kids his age*. Invading others’ personal space. Climbing EVERYTHING. Running everywhere, unable to walk. Having to hold our hands & jump in place to stand in line. He wasn’t all that impulsive yet - that has begun to rear its head more recently. 

Edited April 15, 2020 by Shoes+Ships+SealingWax

[kbutton]

On 4/13/2020 at 3:45 AM, JessinTX said:

Thank you for this... I don't want to create a problem that's not there when maybe she's just a strong-willed little girl who will one day rule the world, and I've read one too many articles about drug addicted babies and disrupted attachments.

I know several adoptive families that weighed the is it drug exposure? Is it attachment? Is it trauma (even if the child was given up willingly as an infant)? Is it a special need or learning issue? On the occasion they do find out about the bio family, there is often a history of special needs/learning issues/mental health that are driving the other pieces, but maybe previous generations made do well enough without things getting too crazy, and the coping just broke down, or the bio parent/s had a more intense version of what was already going on.

Even in families with no adoption in the picture, this stuff doesn't crop up all that randomly if you shake the family tree a bit. :-) 

So, it's often "all of the above" and not just one thing, even if drug exposure is not in the picture. 

Anyway, I guess I'm saying don't put all your eggs of concern in one basket--like Peter Pan said, try things, and if you don't get results relatively quickly, try something else. If you see clues that give you more information, follow them, but try to get private testing that helps add data to the pile. 

My kids with ADHD have more inattention, though one has impulsivity, so at 4, they were different. I did have a sensory seeker, and OT and VT helped straighten that out some (vision therapy was helpful because the philosophy of the therapist involved lots of body work--it was just a nice bonus). He needed a ton of vestibular work and deep pressure in a really specific combination that took the therapist several weeks of trial and error to figure out. He also has ASD, so that changes how this all looked.

The other's ADHD is straight inattentive.

Both respond quite well to meds.

When we use melatonin, we get a bi-layer tablet--part of the tablet dissolves more slowly to be released when the first part is starting to wear off. You'd have to see if it's the right dose or not. https://www.naturesbounty.com/our-products/specialty/diet-supplements/bi-layer-melatonin-5-mg-60-bi-layer-tablets/   We get it at Kroger.

[kbutton]

9 minutes ago, Shoes+Ships+SealingWax said:

I had discovered that if I wore out his brain his mind slowed down a bit so we started “school” early!

Actually, this worked with my intense older kiddo who was inattentive but sensory seeking too. He turned out to be profoundly gifted. He was literally completely unmanageable if I didn't pour stuff into his brain for at least half an hour nonstop every morning before we even ate. Books, books, books are what he wanted upon waking. Even before he could talk. I had forgotten that you said she seems to get wound up with more activity--mine could be that way even though he wasn't hyperactive. Engaging his brain in the activity helped. He liked doing real life tasks--digging, picking up sticks (for pay by that age--he understood the gist of money by age 2 and would choose things carefully in the dollar store), cleaning, pouring, mixing, pounding nails, etc. I finally sent him to a Montessori preschool 2 half days per week, and it was really up his alley as long as they didn't get too fussy about him doing things in exactly the expected progression.

The hard part was finding something that worked for his motor skills, which were all over the map from exceptionally good to exceptionally poor, depending on the task.

[Shoes+Ships+SealingWax]

1 hour ago, kbutton said:

Actually, this worked with my intense older kiddo who was inattentive but sensory seeking too. He turned out to be profoundly gifted. He was literally completely unmanageable if I didn't pour stuff into his brain...

Yep! I’m not sure if mine is gifted or on the cusp. They gave him the WISC as part of the ADHD eval, which came back in the 120s, but of course he was/is unmedicated & judging by their description was basically bouncing off the walls for the entire assessment sooooo I’m not sure that’s entirely conclusive 🤷🏻‍♀️

Either way he’s a bright kid who NEEDS academic stimulation the same way he NEEDS physical stimulation. 

Edited April 14, 2020 by Shoes+Ships+SealingWax
Correct spelling error

[kbutton]

7 minutes ago, Shoes+Ships+SealingWax said:

Yep! I’m not sure if mine is gifted or on the cusp. They gave him the WISC as part of the ADHD eval, which came back in the 120s, but of course he was/is unmedicated & judging by their description was basically bouncing off the walls for the entire assessment sooooo I’m not sure that’s entirely conclusive 🤷🏻‍♀️

Lol! It's a snapshot. Generally though if a kid is getting into that range, and you know there is a diagnosis coming down, you basically tack the words "at least" onto the score. Effective meds can make a shocking difference on test numbers for ADHD kids, and if there are other quirks that have been remediated or addressed in between tests, it can get interesting really fast. Other times, 2e kids will actually test worse over time. It's not very straightforward! 

[Shoes+Ships+SealingWax]

1 minute ago, kbutton said:

Lol! It's a snapshot. Generally though if a kid is getting into that range, and you know there is a diagnosis coming down, you basically tack the words "at least" onto the score. Effective meds can make a shocking difference on test numbers for ADHD kids, and if there are other quirks that have been remediated or addressed in between tests, it can get interesting really fast. Other times, 2e kids will actually test worse over time. It's not very straightforward! 

Yeah, I’m not really worried about it either way. He’s home, so I can meet him wherever he is & having the diagnosis will mean that the ADHD shouldn’t hold him back from performing to his ability (we can seek treatments & accommodations as necessary). 

[kbutton]

Just now, Shoes+Ships+SealingWax said:

Yeah, I’m not really worried about it either way. He’s home, so I can meet him wherever he is & having the diagnosis will mean that the ADHD shouldn’t hold him back from performing to his ability (we can seek treatments & accommodations as necessary). 

It is great when it works out that way--our kids have been more like onions. We keep finding layers of "other stuff" under the initial, obvious stuff, lol! Never a dull moment. They've also needed reassessment for IEPs and things (we get services in our state even as homeschoolers, and it's worth our effort to jump through the hoops).

[Garga]

My ds17 has adhd.  When he was 4, I read a tip on the Flylady website (she helps people keep up with housework) to set a timer for 5 minutes a few times a day and rush around and tidy up a room in a hurry.  I got tears in my eyes, because I never got 5 minutes without having to tend to my son because he was in a constant flurry of activity, often destructive without me being there to guide him.  I never got more than 2 minutes.  I used to be filled with a sort of despair that I’d ever be able to do ANYthing other than stare at my child and keep him from knocking things over or spilling things, etc.  It was constant and very upsetting to me.

A couple of times I tried to make him be silent for 10 seconds, like a game.  “Let’s be completely quiet while I count to 10.”  He made it to 4.  We never got past 4 seconds without him making a noise. He couldn't help himself.  He was a constant stream of noise.  Swooshing noises, humming noises....noise, noise, noise, never-ending noise.

He hated being stuck at home, but also hated being out in other places for too long because he’d immediately become bored.  We’d go to a play area for him to play with friends and me to be with their adult moms and after a little bit, he’d be bored and throwing fits to go back home.  Where he’d be bored again.

It was a constant power struggle between the two of us where no matter what I said, his knee jerk reaction was to come against me.  And most of what he wanted to do was destructive, so I was constantly having to try to rein him in, which made me want to fight against me. I’m a pretty placid person and my style isn’t authoritative, so it was very frustrating to have every interaction turn into a battle over nothing.

He never, ever, ever was still.  He used to hit his head so much under tables and counters.  For example, we’d go to McDonalds or the bank and when you stand at the counter to be waited on, there was a bit of a lip.  He’d inevitably stand under lips like that and jump and hit his head.  I learned to watch for it and without fail if there was a lip, I’d have to drag him out from under it just as he started jumping.  I usually got to him in time.  

He constantly hit his father on the chin with his head.  Constantly.  I knew that if I was sitting my by son, I would have to hold my hand in a defensive position under my chin the entire time to protect it.  DH has ADHD as well, and could never remember to protect his chin, so DS would hit DH’s chin almost every night.  I used to wonder why the two of them could never figure out how to stop injuring each other.  (DH wasn’t dx’d with ADHD until DS was 6, so I didn’t know I was dealing with 2 ADHD-ers.)

Mostly he was full of life and energy and I loved him and still love him to pieces, but he was so very hard to deal with.  Constant motion, constantly getting into things, constant noise.  I would get quiet looks from all my friends as if I was parenting him incorrectly because none of the other kids flailed around as much as mine did.  They didn’t get it when I’d talk about how exhausting it was to watch him day after day, just trying to keep him alive.  I’m sure they were judging me and my inability to handle him. He never was the sort to sit quietly and do something for more than a couple of minutes at a time.  Color a page?  Scribble a single color in the middle for half a minute, “I’m done!” And off he’d bounce to the next thing.  

Being outside was challenging.  As soon as he was out of the door, his impulse was to RUN far and fast.  I never went a single day without wearing shoes on my feet all day long and keeping my keys in my pocket.  If he ever got out of the house, he’d be taking off up the street.  No matter where he was, he wanted to run flat out.  Up the street, in a parking lot, through backyards.  His grandparents lived on acres of land next to other people who lived on acres and one day at their house he took off running and I had to run after him for acres as he was just flying through the yards with no goal in mind.  I couldn’t let a 4 year old run wild off down through the acres of land, so there I was in my running shoes trying to keep up.  I caught up with him 4 yards down and had to carry him home because he couldn't understand why he couldn’t stay in this stranger’s yard and play in it, or keep running down 4 more yards.

I taught the 3-5 year olds at church and the other kids could sit and do an activity or listen to a story, but he would just interrupt and grab things and not do the activity the entire time.  I wondered if it was just because I was “mom” and maybe it was.  I don’t know.  Compared to the other kids, he was a little tornado.

It’s been a long road.  After my DH was dx’d he started taking meds (DH did.). They changed his life.  And he didn’t feel he could deny his son the gift of being able to control his impulses and to focus, so at age 7 DS started taking meds.  They instantly changed him.  At that time it was for the best.  He was still wiggly, but he became sweeter and could get his work done.  The power struggles disappeared overnight.

Then we went through a bout of semi-serious anxiety and just came up out of depression.  Anxiety is probably linked to the ADHD, as those two go hand in hand.  The anxiety seemed to start when puberty started.  The depression seems to be linked to trouble sleeping (caused by anxiety and ADHD), but as long as we can let him sleep in very late in the morning (about 11:00), the depression lifts entirely. 

He’s 17 now and very calm.  Very quiet.  He sits still.  He speaks quietly.  When people talk to me about him, the first thing they say is, “Your son is just so kind!”  He’s gentle and I love him to pieces.  Back when he was 4, I’d have never in a million years thought he could have been calm, quiet, peaceful, or gentle.  We do not have battles of wills.  His teenage years have been without rebellion, though at age 3/4/5 there was constant pushback on anything asked of him.  

Edited April 15, 2020 by Garga

[caedmyn]

I have a few who most definitely fit the criteria for ADHD (not diagnosed cuz DH doesn't believe in such things).  My most ADHD child is DS11 who was the most active kid I have ever seen from ages 1 to 5 or 6.  When he was 6 mo old we attended an hour long event and he stood up on my lap holding my fingers and bounced himself up and down for the entire thing.  He was very fast and constantly moving and climbing.  Nothing ever wore him out.  I think he was 5 or 6 before he made it through an entire meal without falling out of his chair repeatedly (and then only because we got one of those wobble seat cushions).  I have since seen one other kid who is probably even a bit more active as a toddler/preschooler, and then my current 3 yo rivals DS11 for activity level.  DS11 was also so incredibly impulsive.  He was a runner, and a Houdini...nothing was ever enough childproofing to keep him out of stuff.  He was (is) what I call a "more" child...louder, more dramatic, stronger, faster, more ingenious, just more of everything.

[JessinTX]

6 hours ago, kbutton said:

Books, books, books are what he wanted upon waking.

Ha ha! We have to pick out books for the next morning as part of our bedtime routine - she stacks them on her nightstand and first thing in the morning it's booktime. And when she gets up in the middle of the night and comes in my room (which is most nights) she brings them with her!

[PeterPan]

16 minutes ago, JessinTX said:

Ha ha! We have to pick out books for the next morning as part of our bedtime routine - she stacks them on her nightstand and first thing in the morning it's booktime. And when she gets up in the middle of the night and comes in my room (which is most nights) she brings them with her!

That's a really good sign! Fwiw, my very ADHD dd who developed such a love of reading and books (and read comics till I thought they would destroy her, haha) did *exceptionally* well on the ACT. So never make assumptions about how this works out, because these kids can be surprising. You're probably seeing some strengths that are going to continue to be there, things you can harness. Now I have a dc who is the complete opposite, so I see the contrast, lol. 

So enjoy what you're seeing in strengths and nurture them. 

[JessinTX]

@Garga

So identify with so much you say! Not quite to that extreme thank goodness. But yes WHY does every single thing have to involve a debate and negotiations and a battle of wills. I think I'm much like you. Not about drama. Like predictability and just getting things done in the most efficient and non-disruptive way. So the constant "But Mom, I just...." "But Mom, I have to...." "But mom...." "BUT" "BUT" is EXHAUSTING. And I'm not talking like clean your room or It's bedtime. I'm talking like "Honey why don't you pull up your pants instead of bouncing around with your pants down and falling." or "No you can't keep putting more and more toothpaste on your toothbrush. It will make you sick." Like normal stuff. 🤦‍♀️

And the hurting people. Peter Pan asked if she's safe... I think she's safe enough. She's not a runner - Thank God - and not like leaping off tall buildings or anything. But the people and things around her not so much. I totally get the defensive posture when she's nearby because as soon as I take my eyes off her she's going to throw something at me, leap on me, crash into me. DH has threatened to start wearing a cup around her. She's given up fat lips more than once. She thinks she's playing and it's all hilarious. 

She does like activities and is quite crafty, but you can't give her an activity and think she's going to do it quietly or something. She'll be standing in the chair, standing on the table. Spilling everything. And wants your constant interaction and input. We finally had to quit going to the library storytime because she could not get it through her head that she couldn't interrupt the librarian with every thought in her head about the story - and she has A LOT of thoughts. 

You give me hope though. 😀That she can and hopefully will mellow out at some point. DH has also threatened (jokingly) to move out when she hits puberty. 

[JessinTX]

3 hours ago, caedmyn said:

 He was (is) what I call a "more" child...louder, more dramatic, stronger, faster, more ingenious, just more of everything.

I love this description! 

[JessinTX]

7 hours ago, kbutton said:

When we use melatonin, we get a bi-layer tablet--part of the tablet dissolves more slowly to be released when the first part is starting to wear off. You'd have to see if it's the right dose or not. https://www.naturesbounty.com/our-products/specialty/diet-supplements/bi-layer-melatonin-5-mg-60-bi-layer-tablets/   We get it at Kroger.

Oh that sounds like the thing! I wonder though if I could find a chewable version - I'd think for the ER it would have to be swallowed whole. I don't know if she could swallow a pill. And she normally only takes 1mg. But I'd think you'd need a bigger dose, because you'd still want to get the normal dose in the "inital shot" and then the rest later. Right? Or does it not work that way? I think I might need to call her doctor. 

You ladies are so full of good ideas!

[PeterPan]

14 minutes ago, JessinTX said:

But yes WHY does every single thing have to involve a debate and negotiations and a battle of wills.

Well I will say that she's showing her *language* ability in it. If she didn't have such strong language, it would come out a totally different way. The arguing, yeah, pain in the butt. But it's so pleasant to have language skills to work with. It means you can look for ways to tap into expression and language and intrigue her. Writing prompts, anything creative, funneling that opinionation other ways, kwim? 

16 minutes ago, JessinTX said:

She thinks she's playing and it's all hilarious.

Ok, you probably know this, but you're allowed to teach baseline concepts and rules. Like don't be too controlling just yet maybe, but at least really foundational. I used to *train* my ds on things, just like a dog. Actually we barked doing it and pretended it was dog training. But things like stop means stop, freeze, come, whatever you want her to be able to do. Think about 1-2 commands you could train her on that would be *universal*, make sense in multiple contexts, and make sense to other people. 

[PeterPan]

1 minute ago, JessinTX said:

don't know if she could swallow a pill.

We worked on pill swallowing with Nerds, the little candies. I think my dd could swallow pills around that age, so it would at least be worth a try. You're not getting a time release without that. 

The 1mg dose is probably biologically appropriate. I've read caution against the really high doses.

[Shoes+Ships+SealingWax]

7 hours ago, JessinTX said:

Peter Pan asked if she's safe... I think she's safe enough.... But the people and things around her not so much. I totally get the defensive posture when she's nearby because as soon as I take my eyes off her she's going to throw something at me, leap on me, crash into me....

She does like activities and is quite crafty, but you can't give her an activity and think she's going to do it quietly or something. She'll be standing in the chair, standing on the table. Spilling everything. And wants your constant interaction and input.

This is very much like DS7 at that age!

He can now manage to be still enough to do a high-interest activity that requires being careful / gentle, like watercolor painting. He’s impatient to get going, chatters constantly, & is GONE the instant his work is completed — but I don’t have to worry about him dumping the paints or running circles around the table spilling things, or getting frustrated & throwing supplies. He can do maybe 15min of this 1:1. He even does okay in a homeschool library art class, though there he does buzz around the room & invade people’s space a bit. Thankfully the teacher ADORES him - she is really supportive & gentle! 

He’s also gotten a lot less active over the past year, which is fortunate because we moved &  can’t have him in sports 4+ hours a week year-round here the way he was before. We still get hurt playing physically with him, because he doesn’t know his own strength & gets way too ramped up, but he loves tabletop games (even complicated, 14+ ones) so we spend a lot of time doing things like that to bond instead. In fact, if memory serves it was around age 4 that we really began to introduce him to tabletop gaming... 

Edited April 15, 2020 by Shoes+Ships+SealingWax

[PeterPan]

3 hours ago, Shoes+Ships+SealingWax said:

if memory serves it was around age 4 that we really began to introduce him to tabletop gaming...

That was why we had such a laugh when the first (idiot) psych said ds had ADHD-I. He was playing Star Trek Catan at 5/6 and we're like seriously, that is not ADHD-inattentive, lol. Now they call him ADHD-combined plus the ASD2 and some other stuff. But yeah, go for it, games are good. A lot comes out with games, lol. 

[Garga]

14 hours ago, JessinTX said:

@Garga

So identify with so much you say! Not quite to that extreme thank goodness. But yes WHY does every single thing have to involve a debate and negotiations and a battle of wills. I think I'm much like you. Not about drama. Like predictability and just getting things done in the most efficient and non-disruptive way. So the constant "But Mom, I just...." "But Mom, I have to...." "But mom...." "BUT" "BUT" is EXHAUSTING. And I'm not talking like clean your room or It's bedtime. I'm talking like "Honey why don't you pull up your pants instead of bouncing around with your pants down and falling." or "No you can't keep putting more and more toothpaste on your toothbrush. It will make you sick." Like normal stuff. 🤦‍♀️

——

Oh my yes!!!  I couldn’t think of exact examples when I was writing above (it’s been a long time), but your examples are exactly what I was dealing with.  The simplest and most logical of things (like pulling up pants) was a battle. It drove me bonkers. 

—-

And the hurting people. Peter Pan asked if she's safe... I think she's safe enough. She's not a runner - Thank God - and not like leaping off tall buildings or anything. But the people and things around her not so much. I totally get the defensive posture when she's nearby because as soon as I take my eyes off her she's going to throw something at me, leap on me, crash into me. DH has threatened to start wearing a cup around her. She's given up fat lips more than once. She thinks she's playing and it's all hilarious. 

—-

Yes to all this!  Word for word.  And he’d get a look on his face like, “Geez, people, stop being dramatic. It’s not like I actually hurt you or anything,” and you would be HURTING.  I have to say, the moment he started taking his meds, that “who cares?” attitude went away, ad he could actually realize he’d hurt us and give an appropriate, “I’m sorry” response instead of blowing us off. 

—-

She does like activities and is quite crafty, but you can't give her an activity and think she's going to do it quietly or something. She'll be standing in the chair, standing on the table. Spilling everything. And wants your constant interaction and input. We finally had to quit going to the library storytime because she could not get it through her head that she couldn't interrupt the librarian with every thought in her head about the story - and she has A LOT of thoughts. 

—

Yes, to all this too.  I didn’t know that other little kids weren’t all like him and was shocked when I saw that kids will sit and paint or color or do whatever for like a solid 15 minutes or more.  The jealousy I felt when I realized that all my friends could sit and do an activity with their kids without feeling like a cat in a roomful of rocking chairs, just waiting for the spill or the mess or the galloping away.  He’d be off getting into something else while I’d be frantically trying to clean up the activity/mess he abruptly left.  

—-

You give me hope though. 😀That she can and hopefully will mellow out at some point. DH has also threatened (jokingly) to move out when she hits puberty. 

—

Yes, there is hope!  For sure!!  

 

[JessinTX]

So I spoke with the psychologist that sees my older daughter (for completely unrelated issues) during her regular check-up this week. Gave her a VERY brief overview of history and concerns as I was aware I was taking time she hadn't scheduled for my other daughter, and she said it would be very appropriate to go ahead and have her evaluated. That the things I had noticed combined with her history were definitely red flags. Her office is sending an application for us to fill out. But it will likely be late summer before we get an appointment. Maybe longer depending on how long this COVID thing goes on. They are still doing follow-ups via telehealth but not doing new paitients - so there could be a lot that have to be rescheduled before we can even get in the line-up. 

I did the primitive reflex tests via instructions I found online. At first I was not too sure about them. I didn't suspect that DD would have any trouble with any of the exercises, but it turns out that there were FIVE that seemed to indicate a retained reflex! That's in my untrained observation. The ATNR was most obvious and pronounced. She also showed signs of retaining the TLR, Spinal Galant and Palmar reflex (on her left hand only). And probably the Moro reflex. She had a bit of a hard time with it, but I'm not 100% sure if that's because she couldn't do it or couldn't quite understand what I wanted her to do. It was kinda complicated. I'd think that someone with a retained startle reflex wouldn't enjoy flopping backwards and upside down from the furniture the way she does. So I'm considering buying this kit for exercises https://www.solvelearningdisabilities.com/primitive-reflex-integration-2/. Any thoughts? Or do you think I'd do just as well trying to find free videos or something. Or should I wait until we can get an OT eval?

[PeterPan]

11 minutes ago, JessinTX said:

But it will likely be late summer before we get an appointment.

I know that feels like a long time, btdt, but it will be over quickly and work out. This summer is gonna fly. And a 6 month wait is pretty normal. So I'm glad you're on the list and have a name you trust, whew! That's a big step.

12 minutes ago, JessinTX said:

it turns out that there were FIVE that seemed to indicate a retained reflex!

You've got my jaw dropping here. Well there you go. So it's GOOD you're not doing evals now. It's fine. You work on these for a few months till it's all settled down. Then I would get an OT eval. Now if you can find an OT who kicks butt at retained reflexes (and unfortunately most DO NOT) then you could do that.

13 minutes ago, JessinTX said:

So I'm considering buying this kit for exercises

Oh mercy, these people are so king of google search advertising, lol. I've seen them, and I have no clue. I can tell you they make it sound pretty mysterious and like please plunk your money to make everything better. I hate that part, because you have no recourse if they're *not* good.

I can tell you that the PT I used (after trying a bunch of OTs who used systems that were sort of incomplete or incompletely implemented) was from the Pyramid of Potential. And therent dvd is $35. So I would cross your list of what is testing + with their list on the video. If it's enough, you could start there, downloading it, whatever. Those exercises worked for us. 

I can also tell you the Moro is *foundational* and that someone who does this a lot (not me) would probably have an order they want to go in. Or they would chunk and have you start with a few and then add a few more as the first ones integrate. So what you might do (and I have never done this to anyone else, ask @Kbutton for better advice because her ds had a retained Moro) is I'd start with the Moro and work out your kinks. My ds was a HUGE pain in the butt to do these exercises with. He'd scream, squirm. I basically plunked him on the floor for some and had him watch a movie while I did the movements to him. He basically was getting overwhelmed by the input and his behaviors actually got a bit *more* challenging. 

So it took us a month to work out the kinks and find a routine, ways it worked. It's ok if you have a learning process. Then the next session (a month later) we added say three reflexes. We worked those every day, multiple times a day, for a solid month. Then we came back and added the rest of the exercises. And then we continued for another 6-8 weeks till he was consistently just calm calm when provoked with the tests and exercises. At that point I just did maintenance input to make absolutely sure. (His body was really hard to deal with and I didn't want them to reappear!!!) Some people's reflexes re-emerge when they're stressed. Some people think inulin and prebiotics can help with that.

So see what Kbutton says, but I think if you have a professional who's really good with reflexes they can help you. Musgatova is another system that has a good track record. 

As far as doing only one side of the body, you know, I'd still do the input exercises to both, just me. I just would. 

Well cool. You know that Spinal Galant causes wetting, ATNR is directly connected to ADHD, and some other weird things she's probably been doing that you haven't told us (mouthing? biting?) are also likely to improve. So this is going to be AMAZING. It's a lot of WORK, but this could be really profound. And if you get these under control over the next say 4 months (yes, you can!) and get an OT eval, you're going to be in a different place. Then you'll follow up with the psych and maybe your doc for some meds for what is left. Maybe not even ADHD meds at that point. Maybe *anxiety* meds. Maybe run some labs for D, some genetics. That kind of thing. How does she sleep at night? Genetics and some targeted supplements can tone down behavior too. 

Well I'm excited for you. Keep us posted. Oh there's a really good book Stop ADHD I think. It has exercises. But I think the videos from PoP would work. I just can't say about that other place, might be fine or might be a repeat of everything that is free online. I can tell you what is free online *isn't* what's in the Pyramid of Potential stuff and the PoP stuff worked for us. But there are other systems that work, sure.

[JessinTX]

18 hours ago, PeterPan said:

some other weird things she's probably been doing that you haven't told us (mouthing? biting?) are also likely to improve.

Oh mercy! Did I not mention the chewing - LOL. I think I lumped that under "sensory issues."  This kid is so oral. She chews EVERYTHING. I don't need a puppy. Cause I've already got one. She can destroy one of those little sports bottles with the plastic straws in minutes. My mom likes to buy the girls those big inflatable toys whenever they go to like the circus or zoo. DD4 inevitably ends up biting a hole in hers. Blocks, Little People, whatever. They all have chew marks on them. She chews her nails until they are bleeding. And we have tried all. the. things. to get her to stop. Chewy tubes, chewelry, certain foods, vibrating toys, electric toothbrushes. etc. 

I'll let you know how it goes once we get started on the exercises. 

[PeterPan]

3 hours ago, JessinTX said:

Oh mercy! Did I not mention the chewing - LOL. I think I lumped that under "sensory issues."  This kid is so oral. She chews EVERYTHING. I don't need a puppy. Cause I've already got one. She can destroy one of those little sports bottles with the plastic straws in minutes. My mom likes to buy the girls those big inflatable toys whenever they go to like the circus or zoo. DD4 inevitably ends up biting a hole in hers. Blocks, Little People, whatever. They all have chew marks on them. She chews her nails until they are bleeding. And we have tried all. the. things. to get her to stop. Chewy tubes, chewelry, certain foods, vibrating toys, electric toothbrushes. etc. 

I'll let you know how it goes once we get started on the exercises. 

Yeah, it's one of the reflexes. There are two I think. If you look at that link again that had the list, I think it's Babkin. https://www.brmtusa.com/the-babkin-reflex  So our PT had us *brush* the sides of ds' face and that was for one of the reflexes the PoP tests. But this other one, Babkin, we never tested. I just saw it listed and thought hey why not. And there's kind of rule of thumb (my personal opinion, I'm not a clinician), where if you do something and it's irritating, maybe do it some more and see if it calms down. And since my ds was still biting and chewing and had the speech delays and the writing issues, I was like hey why not...

So I think for that, in addition to everything she had us do from PoP, we simply stroked his hands. Just like we stroked cheeks, feet, his back... Not really a Willbarger protocol but just giving input with lots of different textures so that part of the body would process the input and go ok, used it, did that. So like on his feet, we did different types of brushes, ice cubes, warm/cold, pens, all sorts of thing. On his back, same gig. On his hands, I don't recall doing the ice cubes, but yeah the tips of your fingers lightly, then things more rough. So I had different brushes like a really soft nail brush, a really coarse boar bristle brush, etc. and I'd just brush and brush the part we were working on. It was terribly uncomfortable for him to tolerate, but it worked.

I think I'm saying don't be afraid to *try* things, kwim? And yeah, he doesn't chew at all now. Not at all. This is something you can win on. You may have a really unpleasant 3-4 months working on it, but at the end you'll have won. I was doing that brushing, all those exercises, 3-4 times a day. He couldn't tolerate at first, so we just did what we could. 

While you're doing all that, maybe take some time and read about Interoception. It's probably your next step after the reflex work. So 3-4 months of reflexes, then 8 weeks of hard push to get through the phase one of the interoception curriculum. Then your psych evals. You should be in a much better place at that point and very confident of what you need and what remains that needs meds. 

Does she avoid the sun or anything?

[kbutton]

On 4/17/2020 at 8:35 PM, PeterPan said:

I can also tell you the Moro is *foundational* and that someone who does this a lot (not me) would probably have an order they want to go in. Or they would chunk and have you start with a few and then add a few more as the first ones integrate. So what you might do (and I have never done this to anyone else, ask @Kbutton for better advice because her ds had a retained Moro) is I'd start with the Moro and work out your kinks. My ds was a HUGE pain in the butt to do these exercises with. He'd scream, squirm. I basically plunked him on the floor for some and had him watch a movie while I did the movements to him. He basically was getting overwhelmed by the input and his behaviors actually got a bit *more* challenging. 

Moro is a big deal, and it's very stubborn. I rarely see consistent methods of testing for Moro--some testing seems to evoke it better than other testing. I personally go with the asking the child to walk with their feet turned in and then walk with their feet turned out. What happens is that they try and either can or can't. Then, you watch what their hands are doing. If their hands are not just hanging loosely at their sides, they have Moro problems. Generally you'll see them kink up their arms or at least their wrists, ball up their fists, and turn their hands the same direction as they are trying to turn their feet. They might be able to turn their hands but not their feet. It can be really striking. If it's not striking, but they aren't relaxed while successful, they often can still use some bilateral coordination work. Just my two cents.

Kids with certain kinds of issues might not fully integrate--connective tissue disorders frequently keep kids from fully integrating, but the work can still help. They'll need some tune-ups basically every time they grow. Their bodies just don't have the same kind of proprioceptive feedback as people who have normal connective tissue. All kids are more hypermobile compared to adults, but you might want to look at signs of a CTD just in case. The most common is going to be Ehler's-Danlos. Different CTDs have different patterns of hypermobility. My son's is kind of eclectic, which is typical of his CTD (Marfan). His shoulders and hips go completely in and out of the socket painlessly. If you aren't holding his joints when it happens, you wouldn't realize it. They just seem unstable vs. totally out of the socket! He has some joints that are super tight to make up for the loose ones. Kids with EDS are more likely to be...floppy? One little boy I know who probably has it (they didn't test for what kind he has), has arms that just keep going after he's straightened them. His elbows bend past where they should. Some kids are double-jointed with their CTDs. If this is the case, you might want to find a PT or OT who is familiar with that population so as not to do something that could be harmful. 

It is my understanding that postural reflexes will not develop very well until primitive reflexes are integrated. For my son, this looked like a disconnect between brain and muscle groups. My son had decent core strength, for instance, but put him on his back, and he was like a turtle--he couldn't get up. Working on the reflexes connected his brain and core better. But then he gets unintegrated again due to his CTD. Also, he's not allowed to do things like crunches or sit-ups now that we know, so that connection is less robust. But he's no longer totally helpless on his back. 🙂 

Pyramid of Potential has a really good reputation. It definitely won't hurt. 

Oh, this is weird, but my younger kiddo didn't really show a lot of evidence of sensory seeking and such when he was really young, but it was because things were such a mess, his body hadn't even gotten that far. When things started integrating but weren't under control yet, he started sensory seeking. It was so weird!

For Moro--duck and pigeon walks. There are progressions for this. Then bear walking and other crawling activities. Then the lizard one with alternating sides, leading to the lizard but standing up. There are things you do on your back and front that use arms and legs in various patterns. I think those might be as much for the ATNR and STNR as Moro, but I think it's assumed that if you have Moro, you'll need the other work.

All of the exercises should have a progression of difficulty--adding or changing certain moves as they get easier, and then once a stage is mastered, you can add metronomes or distractions (singing, saying the alphabet, telling a story, etc.) for the easier stages of the progression. 

HTH

 

[kbutton]

BTW, sensory and reflex issues often lead to anxiety later on if not integrated. It's like two sides of a coin. 

[JessinTX]

2 hours ago, kbutton said:

It is my understanding that postural reflexes will not develop very well until primitive reflexes are integrated. For my son, this looked like a disconnect between brain and muscle groups.

This is so interesting! In addition to my 4yo DD that I've been talking about here, I have a 20yo. DD (biological) that is autistic and has a genetic disorder called Soto's Syndrome. And she has the worst motor planning ability ever. Like I can't even explain how bad it is unless you saw it. And from reading all this about primitive reflexes I don't even have to test her to be pretty sure she has them ALL. Or most at least. I don't know how I've made it this far without knowing about this and how fundamental it can be for development! I mean I had heard about this concept of "retained reflexes" but somehow the information I encountered was never put in a way or context that seemed applicable to my older DD. So I've never read about it in depth. 

Funny enough though the OT that works with her does a lot of the stuff that seems meant to target these things. Having do things in prone and such. But now I'm thinking these need to be done much more frequently. Anyway sidetrack.....

DD4 is pretty coordinated and everything. Her disconnect seems to come from like "What do you mean it hurts when I hurl my entire body weight at you out of the blue?" 

2 hours ago, kbutton said:

I rarely see consistent methods of testing for Moro--some testing seems to evoke it better than other testing. I personally go with the asking the child to walk with their feet turned in and then walk with their feet turned out. What happens is that they try and either can or can't.

This is NOT the instructions I found. I'm going to try to find this and try this. It sounds a lot simpler than the one I did. I mentioned I wasn't sure about this one because I wasn't totally clear whether she couldn't do it or just wasn't really sure what I wanted her to do. 

Thank you so much!

[kbutton]

2 minutes ago, JessinTX said:

DD4 is pretty coordinated and everything. Her disconnect seems to come from like "What do you mean it hurts when I hurl my entire body weight at you out of the blue?" 

My kiddo with the reflex issues seemed mostly coordinated at four. It was kind of strange. But I think the CTD features became more pronounced later on, so maybe he was just kind of in a limbo. Kids also compensate really well. I have heard about athletes having issues and not really knowing it--like being able to do things one direction but having more trouble with the other (bilateral coordination). 

Good luck with both your kids on this! 

[PeterPan]

10 hours ago, JessinTX said:

DD4 is pretty coordinated and everything.

My ds was a championship level gymnast, won *first* at state in parallel bars. Retained reflexes.

And yes, Kbutton is correct that there's an order, so primitive/neonatal/infant reflexes, postural, vision, etc. etc. These early infant/neonatal reflexes help the baby be born, learn to suckle/nurse, begin to right himself, crawl, and eventually walk. So when they're not gone around this age (definitely by 5), it's high time to get them used, integrated, and moved on from so the body can do the next things.

So yes, if you were able to find someone with even more training in reflexes, after integrating the primitive/infant/neonatal they would then check vestibular/postular, vision, etc. It's also why you'll hear people say vision therapy "failed" for them or didn't stick. You have to go in order and some docs will jump and go straight to vision. So ironically, sometimes it's developmental optometrists (not all but some) who've taken the time to learn about this stuff to get their clients READY to benefit from the developmental vision work. Or they'll have an OT on staff who does reflex work to get the clients ready to do vision work. There's a lot of *body* work they do for vision. And even once the vision is going better, they'll call it sports vision therapy. So sometimes a sports vision therapist, someone who specializes in sports vision, will be ready to work on the reflexes in a really hard case. If you're looking for options, those are other places to look.

So then, when the vision is glitched, you can already imagine what happens: poor visual memory, poor visual motor integration, etc. etc. And that shows up in the school work. But then you get these dragon OTs who are telling kids to WRITE MORE and not actually going back to address the underlying problems! It's crazy. Rant rant.

10 hours ago, kbutton said:

My kiddo with the reflex issues seemed mostly coordinated at four. It was kind of strange.

I think if a kid has made pathways and found a way to make some happen, compensating, and then you blow that up by saying no go back and do it the more complete way, that's going to LOOK like things are falling apart for a while, yes. But it's a more durable solution in the long run. It's like saying your ad hoc way of doing xyz thing incorrectly works and you shouldn't have to change. Well it works for a few cases, but it won't work for ALL the cases and will become obvious later as incomplete. 

And sometimes it's just screwy. Like not that it's what happened with your ds, but working on verbal motor planning for my ds directed away brain energy to fine motor. He had OUTLANDISHLY good fine motor till we got him talking. We couldn't have both. There isn't brain energy to do EVERYTHING and it was never a "gift" like people try to say this hyperfixations are. It was just a place brain energy was going because it wasn't going where it should have. 

So we all make choices and sometimes it has consequences we didn't expect. Sigh. But we're tough and we've got this. But could it get WORSE for the op's dd before it gets better? I think she'd be nuts to assume otherwise. It definitely got worse for us and was definitely challenging. And given how incredibly under-responsive her dd is for sensory, she will just have to buckle up, hit the gym, buy chocolate, whatever, and get through.

10 hours ago, JessinTX said:

"What do you mean it hurts when I hurl my entire body weight at you out of the blue?" 

So how much is this impacting her relationships? If you say it hurts even though she doesn't feel it, does she get that and care? I'm just thinking you've got a long road there. Take one step at a time. You've got several more things you're going to be doing probably before that calms down and it all comes together. For my ds, that included ABA strategies and getting in home ABA. If she's not catching on, even when you tell her, maybe see about getting her on a list for the developmental ped, getting qualified for some in home services. I'm in the more is more better camp for services and people spending good quality time with our kids.