Gifted Issues Discussion homepage Forums Twice Exceptional New here, with newly diagnosed 2E kiddo

Ang, there's not a definite 1:1 correlation, but a lot of kids with autism spectrum issues have hypotonia.

Christen, I think I get where you're coming from. Mine was a train wreck pregnancy and delivery as well. The difference, for us, is that my quirky kid has a thoroughly neurotypical twin-- so I can't realistically blame birth trauma. (Personally, I kind of like to point to her dad <eg>...though reality is that the apple didn't fall far from either tree.)

And Phroggy-- great last paragraph.

Hypotonia is a nonspecific symptom that is found in a lot of people who have a wide variety of neurological problems.

Re: birth trauma. Obviously you are a compassionate mom who wanted the best for child. Is it really fair to expect more than that of yourself? You don't have the ability to time travel and fix the past, but you do have the ability to do something about the here and now. Is therapy an option you'd consider? It might be good to have a place to process some of this stuff and get in the moment. I will toss out two bits of information you may want to process. First, there may have already been neurological differences that lead the complicated birth in the first place. It is easy to conclude that the difficult birth lead to the neuro problems, but it may have been the other way around. Second, there are many people who have kids with complex neuro problems who had fairly simple births. That's what happened to me.

As far as the stuff your son is experiencing...It is great you are getting help from the OT and the developmental specialist. It may not seem like it now, but bit by bit this stuff will make a difference. It is easy when you first get a diagnosis to notice (and worry about) a lot of stuff you didn't see before. It doesn't mean though that all of it is really worrisome.

The impression I got from your post was that the most difficult part may be anxiety. I'm wondering if he's seen anyone specifically for that problem. We are dealing with a similar set of concerns, and getting help for anxiety was really important for a couple of reasons. First, because the unchecked anxiety was the foundation of a lot of other problems. Anxiety can get in the way of attention, socializing, etc. It was really hard to make progress in OT with an anxious child. One lucky thing is that your son has a good brain and is capable of learning new things. It is possible to learn to be less anxious and to cope better with fears. Working on this now will help him for his whole life. If you have not already done so I would read the book Freeing Your Child from Anxiety and ask the pediatrician if there is a good therapist in the area who works with anxious kids. You may want to ask specifically for cognitive behavioral therapy.

This is getting long so I'll wrap up with just one more thought. How is his diet? Have you looked at all at supplements? This is anecdotal but I've seen many 2E kids (including my own) improve with some brain support type supplements. This seems to especially be the case with kids with stimming and CAPD type symptoms. Fish oil is often the most helpful supplement. Nordic Naturals sells quality mercury tested oil. It might also be worth investigating zinc and iron deficiency. Those can be linked to stimming behavior. We saw mouth stimming type behaviors disappear overnight with zinc supplementation. (and like a lot of things that suggestion came from another mom, not from a doctor!)

So we've finished the OT evaluation, and it was determined that he could benefit from OT but it wasn't horrendous. He doesn't qualify for OT through an IEP because he missed it by just a few points and she said that there was no way she could fudge the testing to have him qualify. She will be sending me a report with specific things that we can work on at home, and she spent a good amount of time explaining her findings.

We are in the middle of the language assessment, and my younger ds has a speech IEP and this is actually his speech therapist. She and I spoke after the first portion of ds's testing and said that his pragmatic language portion was extremely low, and she had some more testing that she wanted to do before giving me the final results so we have our appt. tomorrow.

I did call our insurance and found out that they cover OT, as well as interactive metronome at a really high percentage of coverage so we're going to wait until after the IEP assessments are done and see what if anything will be provided through the district and if not we'll follow the recommendations and provide the help for him. I'm looking into finding someone to work with him through the anxiety, because that is fairly significant for him and I'm hoping I can find someone through our insurance that also offers social groups as well.

We're very careful about diet in our home (all organics, many raw foods, and no food additives/coloring) but it can always be improved. Unfortunately, whatever sort of rules and ways of doing things in our home are done the complete opposite way in his biological father's home because he feels we offer too much structure so my ds gets to eat total garbage on his visits with his father (they stop for slurpees on the way to the freeway, and then eat fast food for dinner each and every visit). I do have some Nordic Natural's krill oil for myself, so I'll investigate giving it to him as well as zinc and iron.

Hi Christen99,

I just "met" you on the other thread. Hugs to you. You sound like you're doing a terrific job, so take heart.

I'm not sure if this will help, but these are the nutritional supplements recommended to us. My son has gross and fine motor skills issues, and is mildly ADHD.
- DHA fish oils
- Vitamin A (small dosage)
- Probiotics

You may want to speak to other people who are knowledgable about your son's condition to see if these could be helpful to you as well.

Cheers!

Welcome Christen99!

Sounds like you have 2 lovely sons who are highly gifted. I had to smile over 2 parts of your post which exhibited signs of giftedness:

1) Jumping in with both feet. When my DS13 was first given a diagnosis, it was NVLD, so I read every book I could find on it. (At this point we've had several other consults, and think we think NVLD was a misdiagnoses, due to the tester just not getting PGlets, but he currently has a diagnosis of ADD, which seems to fit pretty well. Our local private psychologist said something like: 'certainly he's very bright, and may be having trouble handling boredom, but his big problem is his gap between verbal IQ and Processing speed, therefore NVLD. Wrong: His big problem was being 7 years old spending 6 hours a day in classroom with no one who spoke his language and nothing to do)

Anyway - I sure read a lot of books, and tried lots of the parenting techniques and they were quite useful! OT helped a lot for the fine and gross motor delays.

2)Perfectionism. As a group, we hold ourselves to a 'higher standard' than anyone could hope to live up to - have looooooong memories - and are slow to forgive any errors, we feel we may have made. It is completely true that the doctors are the ones responsible for making the medical decision!!! It is also true that they will do the best they can in each case, but that in a few cases, things will not go as well as we would like. We have a hard time 'understanding' this lack of perfection in others as well. I think it is from our own experience growing up without reasonable frame of reference. Either we were the oldest child, and looked to classmates, parents, characters in book and younger siblings - all ususally hopelessly poor references, or we were a younger sibling - comparing ourselves to the towering godling of the older siblings, but really, how many of us grew up with classrooms full of young people who are similar in age and IQ to compare ourselves too?

Another aspect of this perfectionism, is that we have very strong imaginations, and the idea is more 'present and real' to us than to normally developing people. I told my friend it was like having amphibian eyes - we see what is above and below the surface of the water at the same moment, and for many of us, learning to love 'what is' is a major life lesson.

There are some differences between us, Christen99, that make me smile too. You pulled you kid out of a picture perfect classroom setting, because you clearly knew that you wanted your son to learn to challenge himself! I was totally in denial about my strong desire for this as well. At the time, DH and I was all about DS learning to be a good classroom citizen - we told ourselves that we knew he would be smart, so we would focus on encouraging him to be appropriately social. We totally bought the story that the schools had taught us as children - "it is appropriate for the school to teach to the middle and appropriate for the smarties to learn to occupy themselves for the good of the classroom." Lucky for us, DS was not willing to go along with our plans - he innately wanted to learn at school, and felt it was his right, and let everyone know he wasn't satisfied through his behavior. We had a lot of school meetings to try and figure out 'what was wrong with him.' ((eyeroll))

One piece of advice that I wish someone would have given me, was not to accept the diagnosis as limits, only as starting points. An example is inflexibility. My son was inflexible as a child, although not as severe as you describe yours, and I remembered with great resentment, how much I disliked being pushed through my own inflexibility when I was a highly sensitive gifted child and vowed that I would be more 'understanding' of my child, when I grew up and became a mom. So when my son fussed at his socks and tags, I felt great justification for my remembered resentment, and gleefully cut out the tags and bought 14 pairs of the one type of sock that was ok this year. I finally had 'proof' that I wasn't 'making it up' back then as a child.

This was great for me, and it strengthened my relationship with DS but I wish someone had come along and said: 'Yes, you were, and he is, much more sensitive to physical stuff than average, it's called OverExcitability, and it's common in gifted people -BUT - brains can rewire themselves, and flexibility is a virtue - AND, you, as parent, can go a long way towards helping your son grow more flexible, by kindly insisting that he bear the various small discomforts or life such as itchy clothing or changes in schedule, at least for a short time, and providing encouragement that this is a sign of maturity that the can be proud of. Of course since it really is true that he is more sensitive than ND kids, praise even the smallest marks of flexibility - don't wait until he can do what ND kids can do - praise it when he even hesitates before throwing a fit over something not matching his idea.

Chrisen99, I don't know if these specifics apply to you, but I'll be you recognize the tone of 'I want everyone to have all the possible information that is available - NOW - and it is meant as a gift, not as any kind of put down. Feel familiar?

So, welcome to the board - welcome home!
Grinity