Gifted Issues Discussion homepage Forums Twice Exceptional Tomatis Listening Therapy, OT and Balametrics

So, just some thoughts and a request for thoughts, insight, etc.

I have had DS doing this combination OT therapy - it's a program of Tomatis Listening Therapy while doing OT and some balametrics therapy. DS is wrapping up his "2nd intensive" then he has a 4 week break and then his last 2-week "intensive." I am not sure if they have started on the Balametrics yet. So, I knew this therapy could be 'snake oil' and I assumed the risk. Nonetheless, I am still disappointed at present. I haven't seen enough overall improvement yet and I am a bit disappointed and anxious (but not necessarily surprised). Just wondering if anyone is familiar with these therapies, have any experience with them, etc.? Perhaps I am expecting things too quickly? Positive or negative opinion - both welcome.

The place DS is going has a good rep where I am. I have heard good things, anecdotally from other parents in the community, about the particular place DS is going and insurance often covers/remiburses, which is generally a good sign, I thought (though it such a pita it's not really worth it, imo). So that is why I took the chance. The woman who owns/runs it is Maude LeRoux - she has written a few books. I don't totally regret it (even if it proves to have been mostly useless) because I'd rather do it and know one way or the other than to have always wondered and wished we hasd tried it.

So, basically, the premise is (after they evaluted DS and looked at all his tests, etc) that my son does not have adhd/add but a sensory processing disorder that is causing(?) morphing into(?) an executive functioning disorder as well as affecting processing speed etc. His motor/fine motor delays caused by his hypotonia (ehlers danlos) affected his development, etc and need to be addressed too through this therapy (for example, his sitting in W-position a lot due to hypotonia resulted in less crossing the midline resulting in some of the learning problems we are seeing now).

Anyway, I am at the point that if I don't see some major changes soon and if the eval by the neuropsych in the fall shows little change and shows possible ADD/ADHD, I am going to give up in therpies and start looking into meds.

Okay, well, perhaps there is hope. My mother in law watched the kids today and I mentioned that DS needed to go to therapy tonight. She has no idea about what therapies we are doing or that we are trying something new. She just knows he has been going to OT for the past two years for his fine motor delays. Anyway, she said that the OT must finally be working because she noticed how much better DS's fine motor skills while they were playing Kerplunk. She said he was very good at it. She also talked about how great his behavior has been lately - how much more flexible, less frustrated and more in control of his emotions he is .. She mentioned he seems to handle disappointment much better lately.

So I guess it is making a difference. I have been consulting on a case the past three months - so I haven't been around to observe him lately.

Irena a couple of years ago I attended a conference on 2E issues. The keynote speaker was a paediatrician who sees a lot of gifted kids with ADHD. How he talked about and explained ADHD completely changed my perspective. Completely. One of the things he talked about is that when he sees kids coming in with auditory processing issues, visual processing issues, SPD, etc particularly multiple of these issues, his response is not that those conditions aren't real - they absolutely are - but that they are symptoms not causes. A kid with a cluster of neurologically odd issues (my term!) is almost certainly a kid with a more global neuro-developmental issue that ties it together (ie ADHD, or possibly ASD). And he sees a lot of kids whose sensory processing issues simply disappear when their ADHD is treated. He spoke for over an hour and I've written a paragraph, so obviously I've barely touched on what he had to say that was so compelling and I've paraphrased badly.

But what this leads to is - there were so many parents at that conference who spoke about how they had dragged their child from pillar to post looking for an answer, either being told their child was too normal for ADHD (but had SPD, or irlen syndrome, or, or, or), or being unwilling to be accept that it was ADHD when this was suggested. So many mothers in tears over the years they refused to consider ADHD when retrospectively it was the answer that made sense, tied it all together, and medication was the only thing they'd ever done that made an appreciable difference to their child.

Not long before this conference I was talking to my best friend who knew her son had ADHD, but didn't want to label him or put him on medication. She reminds me to this day how I said to her "Oh but even if he was diagnosed you would NEVER put him on medication would you?" Now my own child is on medication. And I worry about it everyday, it's a big deal. But she is so painfully, obviously better off ON medication that every day I conclude the consequences of not treating are likely to be worse than the risks of medication. The very first day, when I asked her if she noticed anything she said "I feel better, I like it, I want it to last all day, every day." This reminded me of the woman at the conference, who stood next to me with tears streaming down her face and told me how after years of avoiding an ADHD diagnosis she finally gave in and tried medication and half an hour after her first dose her daughter said to her "Mum, my head and my heart feel right for the first time in my life."

This is exactly where I think I am headed. Fortunately, I don't feel like I have wasted too much time or energy because he is only 7 and ADD/inattentive (most likely if he does have an attention deficit) is just sort of becoming evident... (he doesn't have the hyper type that is for sure). I am getting there but of course am afraid of meds HOWEVER, if he really has ADD the meds could be such a God-send and I'd hate him to suffere unnecessary when there is a medicine that will alleviate the suffering ... it's just hard, you know... Well, I am definitely waiting to see what the neuropsych comes up with her in eval and that's not until fall. We'll certainly finish this therapy. And we'll see. But thanks so much for your thoughtful post and insight and advice - very appreciated.

MumofThree, What was his name? Do you remember?

Dr Mark Selikowitz.

We've not used him as our Dr as he's interstate. Note that in Australia a Paediatrician is more specialized than in the USA, from what I understand at any rate. Most normally deceloping / well children here don't see a paed often, if at all. They usually get seen by one briefly before leaving hospital at birth and then, if they are fairly well, often never again. GPs provide primary care. But only a Paed can prescribe stimulant medication.

I am thinking he is either ADD or dyspraxia/developmental coordination disorder. Just as a vent, if I find one more thing wrong with my poor child I am going to need to go on meds myself ... We have what looks like possible dyslexiaand/or dysgraphia, either ADD or dyspraxia and he was just diagnosed with Ehler Danlos (incidentally, the geneticist said in her report to keep an eye out for developmental coordination disorder because it is very often co-morbid with EDS. She didn't mention this at the appointment so I didn't get to ask her more about it). On top of all this, he is so amazingly intelligent, extremely articulate and perceptive. Just a really profoundly thoughtful and creative guy. I know many of you, get it and btdt ....

Ahh thanks... I am just going to look up if he has written anything on the issue, etc. I am interested in his thoughts and theories on the subject.

Whoa he came right up:

http://www.amazon.com/ADHD-Facts-Mark-Selikowitz/dp/0199565031

I can't access my conference notes from my phone but I'll try to remember to text them to you next time I'm at my desk.

Thanks, MumofThree, I would appreciate it that!

ITA with Mum3. Resonates with our experience here as well.

I tend to be skeptical of therapies of the Balametrics/Tomatis/Copyrighted Method with Limited Evidence sort, but I am not a neurologist etc....

DeeDee

I had to join this forum because I really needed to share my experience. My DS is turning 7 at the end of the month and we have been on a roller coaster ride with him pretty much since he was born. A brief background: He was always different than the other kids his age. He was a fussy baby that had issues with noise, clothing textures, foods, etc. We couldn�t have music on in the car, in the house or he would cry bloody murder. He started talking in full adult sentences at the age of two. He was continually meeting milestones well before his peers. Later we took him for testing by a Child Psychologist and he was found to be gifted with an IQ of 127. The Child Psychologist said that she thought his IQ might be higher than was reflected during the test, as he shut down at the end of the test because he thought it was boring. She tried to get him to complete the test but he refused. She said we should retest in a few years. You think as a parent "Wow! Great! Problem solved!" NOPE! Not even close.

He�s had nothing but difficulty in school. He had a teacher last year that was pushing for an ADHD diagnosis. It is often the �go-to solution� for kids that are hyperactive and unfocused; particularly boys tend to be this way because they take longer to develop their frontal lobes. Anyway, we took him to a pediatrician who after a 15 minute observation decided it was ADHD. We thought, okay, perhaps we should try medication. It only made sense! We tried 3 different meds, and the poor kid was crawling out of his own skin. He couldn`t STAND being in his clothing (soft cotton, no tags! and he wanted to take his clothes off in Walmart because the clothes were hurting his skin!!) We went through absolute Hell last year. We took him off of the meds. Apparently if it is ADHD, meds are supposed to work right away. "Like a light switch" - my friend says who has a daughter with ADHD. She is now 14 and the meds continue to work beautifully for her. The meds worked immediately right from the start for my friends daughter. So, we were at a loss.

We couldn't figure out why our son was so hyperactive and unfocused. Then we started looking at the symptoms. He was tiptoe walking, sensitive to noise, touch, certain clothing and he had fine motor skill difficulty. We then discovered Sensory Processing Disorder. Autistic kids can have a Sensory Processing Disorder, as can ADHD kids, as can gifted kids, as can any kid. His Sensory Processing Disorder was appearing like ADHD, because often children with ADHD have a Sensory Processing Disorder! (of interest, it has been discovered that Sensory Processing Disorder can be �measured� during a brain scan. http://thesensoryspectrumblog.com/2...or-sensory-processing-disorders-in-kids/ This shows that is indeed physiological and has a biological base and affects the Parietal, Temporal, and Occipital lobe, which is not the same lobe that is affected when referring to ADHD. ADHD is a frontal lobe issue).

That�s why the meds didn't work. If anything, they were making his already very raw sensitive nervous system even MORE aware of his surroundings! Ta Da! Problem solved. (Oh, if only it were that simple!) It still didn't make any sense. Why was he so hyperactive and reactionary? Why was he so unfocused? We did hours and hours of research trying to make sense of everything. That's when we discovered that our DS had a food dye allergy! And synthetic food dye can cause ADHD type symptoms! Couple that with a very sensitive nervous system, and you've got a mess of a kid. Since the summer, we cut out ALL food dyes (Tartrazine, Yellow # 5, being the absolute worst of them all!) And what a difference! It's been night and day with the ADHD symptoms! They are virtually gone! But we were still having issues with the fine motor skills, the frustration in class. Cutting out the food dyes was not enough.

We looked into various treatments for SPD, and decided on the Tomatis Method. I was like everyone else: Extremely skeptical. This just didn�t seem like it could work. There was no real research done. But, we thought if we don�t try it, we will kick ourselves for not trying and always wonder if it could have made a difference. We have done one loop (30 hours of listening) and are at the end of our 4 week �integration� period and will be starting our next loop this Saturday. Things we have noticed: Our DS is less reactionary. When he does react or get upset it is extremely brief, whereas before it would last for A LOT longer! His fine motor skills are improving. Are they perfect? No. But they are certainly better. He is more focused when he is reading and is less frustrated when he doesn�t know a word. Instead of giving up, he actually tries to phonetically sound out the word. Before Tomatis it would have ended in tears and him screaming. His teachers have said they have noticed a difference. He is no longer covering his ears when he hears loud noises. The tip toe walking has decreased by 95%! He used to always walk on his tiptoes when he was anxious! He has definitely changed. Is it perfect? No. But we still have another loop and we are hopeful that we will continue to see positive changes. I can say with certainty that we are glad we did it. We have definitely seen benefits. I just wanted to share this because this can be a very frustrating road to be on, and maybe our experience can help someone navigate through some rough terrain. Sorry for the long post but I just want you to consider our situation before you consider ADHD.

Just seeing this now! Thank you for sharing your experience RegisteredNurse! And so glad your little guy is doing better!

My son did the whole tomatis thing combined with balametrics, etc. I have to say, it does seem to have helped. I am glad he did it. The little things, too, that came out of it - e.g., his knowing his left form his right (like 95% of the time LOL) , being able to do jumping jacks, stronger posture, etc. It seemed to really help his coordination. Oddly (actually the director says it's not odd at all but I find it odd) his reading ability just sky-rocketed midway through... like some wall or something had been lingering/getting in the way was finally destroyed. His behavior is better, anxiety down. It's weird - it's like a bunch of little things but all together they make for a nice change and for a boy more comfortable in his body.

They recommend doing on intensive of Interactive Metronome to finish up but I just don't have the money and DS really doesn't have the time right now. It's only for two weeks but it's two hours every day for those weeks so I like to do it on a holiday. I was thinking of having DS do it over Christmas but not sure... I am wondering if I can leave it till summer.

Anyway, welcome! And thanks for your story!