Searching in the Dark. Got a Blue Light Bulb to Help?

As a parent, I worry.  As a special needs parent, I worry.  I want to assure that my son has every opportunity that any other child would have to succeed.  I want to make him ready for the world he will face as an adult.  I want to steer him toward independence, to be capable of caring for himself one day.

My son falls within the higher functioning end of the spectrum.  My son is verbal, uses some appropriate language and sentences and is cognitively, average to above average in intelligence.  He suffers meltdowns and repetitive behaviors, but less than others.  He does have language difficulties and perseveration.

Being part of the autism community’s discussion within the blogosphere and on Twitter, I have accumulated more knowledge than I ever had when my son was first diagnosed.  I have seen videos and read stories of children who are also affected by autism, some high functioning like my own son.  Sometimes, profoundly affected.  This community has provided immeasurable insight and education to me and I am extraordinarily grateful.

My son’s future is a mystery to me.  He is not quite ready for kindergarten, socially and behaviorally.  He is ready cognitively.  Will he go in the fall?  Will he continue intensive ABA instead?  I don’t know.  Will he attend kindergarten in a typical class with an ABA aide to help him?  Well, that would be the best of all worlds but is it feasible?  Will that be funded?  I don’t know.

Playing with others.

Recently, a mother asked me if I had signed up my son for kindergarten already.  She also has a child with autism.  Her son is signed up.  Mine is not.  I’m just trying to get my son into a private preschool class for more than 15 minutes of circle time, three days a week.  After voicing my concern over this, my ABA provider agreed to expand my son’s preschool day to 45 minutes, three days per week.  That started last week. Will he be ready for kindergarten by August at this rate?  I really don’t know.

Even though I do know so much more now than I did when my son first received his diagnosis, I feel like I’m in the dark.  It’s like being thrown down a well when receiving the diagnosis and grasping a rope to climb out.  I’m at the bottom, inching my way up in complete darkness, with my son clinging to my back.  In the dark of the well, I’m listening to voices around and above me that are faintly trying to help me out. And just when I think we are making progress, I feel my hold on the rope slip.  We fall back down a few feet and there is nothing for me to do but start my climb again.

What are the options for my son?  No one has discussed any, other than speech, occupational and behavioral therapy.  He is receiving all three.  I have had only a couple talks with his pediatrician and that was before he ever received his diagnosis and after he started therapies.  She is a kind woman who wants to lend her support but really has no in-depth knowledge to add to this equation.  She simply lacks expertise.

I’ve tried reading scholarly studies, including one that makes suggestions for the involvement of serotonin in the brain and treatments that may work.  These scholarly articles are so full of the foreign medical language that it’s like I’m trying to perform do-it-yourself surgery.  Nevertheless, I plow through and actually thought I had found something exciting but I did not.

What I found was a study showing the regulation of serotonin in the brain of people with autism.  As much as I could make sense of this Yale study, the amount and reabsorption of serotonin is not the same in autistic brains as in NT brains.   In fact, it appears there is some problem with tryptophan that affects use of serotonin in the autistic brain.  What I found was information that many people already know.  That is frustrating for me because again, I feel like I’m slipping further into darkness.

What I found was the FDA’s 2006 approval for the use of an antipsychotic medication called Risperidone in autistic children and teens with severe, enduring problems of tantrums, aggression, and self injury to help with this serotonin imbalance.  I know several parents who use this medication to help their children already.  It’s nothing new, nor is it a “cure”.

It was never offered to my son and frankly, I don’t think he would qualify for this kind of intervention.  To tell you the truth, the crazy mommy in me wants to give him some more turkey in his diet to see if the increased tryptophan has any effect on his behavior (I know- kooky, but harmless).  And I’ve actually tried to get him to eat some but he is so very picky about what he eats that it’s going to be difficult.

I also read about the use of hyperbaric oxygen chambers.  I remain excited about this possibility.  I have not heard anyone discuss this option.  But what I have found is this Scientific American online article which recounts findings of a study that shows:

…those who received 40 hours of treatment over a month were less irritable, more responsive when people spoke to them, made more eye contact and were more sociable than kids who didn’t receive it. They were also less sensitive to noise (some autistic children experience a kind of sensory overload from loud sounds and background noise). The most improvement was observed in kids older than five (the study included children ages two to seven) who had milder autism.”

The study appears well grounded.  The executive director of the UC Davis MIND Institute, a world renown and well-respected center where my own son was diagnosed with autism, seems to find it promising.  The co-author of the study says that the effect of the oxygen treatment may be that “the pressure may reduce inflammation believed to restrict blood flow to regions of autistic children’s brains that control speech, or improve its ability to absorb oxygen.”

To me, this is exciting.  Again, it is not a “cure.”  But, I plan to look into it and report back.  I’m thinking it would have to be a serious desensitization process to get my son into one of these chambers and involve ABA intervention.   To me, it looks worth it.

So, all this being said, I’ve come out of the darkness with turkey and oxygen to help my child.  Do you see why maybe some awareness might help some of the families who are faced with the daily worries and struggles of autism?  Awareness can lead to discussion and understanding.  Understanding may translate to funding.  Funding can lead to studies that can find treatment to lessen the severity of the symptoms that hurt my son.

Can you see how desperate I am to help my child and why I think a blue light bulb, in unity with thousands of other blue light bulbs might make a difference?

While I was writing this post, my son came out of the other room with his pants off and was running around in his dinosaur undies.  I asked him if he peed.  He had not.  When I asked where his pants (shorts) were he ran into the other room, brought them out and said, “New pants!” to me.  He was upset.  He could not communicate what was going on.  The pants were fine.  What he was doing taking them off and deciding to run around in his undies is beyond me and made me laugh but to him, I suspect this was a sensory issue that he could not communicate to me.

Two seconds later, he was asking me to find a toy called “Rip” (Handy Manny) in his toy box.  I did not even remember him getting any such toy.  I told him I had no idea what he was talking about.  But indulging this whim, I walked over to his toy box and, sure enough, there was Rip, whom I had forgotten about, but dino undies boy had not.  Before today, he had not played with this toy for about a year.   He has an amazing memory.  It would be nice to expand the strengths he has and minimize the deficits he suffers.

Perhaps, a little eccentricity runs in the family.  I want to feed him turkey in a hyperbaric oxygen chamber and he wants to run around in his dino undies, playing with a toy chainsaw with eyes.  We’re bound to discover something revolutionary together, don’t ya think?  Maybe, to help us out, you could put out a little blue light bulb and start a conversation.  Someday, it could lead to methods other than I can come up with now to help us all.  That would be nice.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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14 Responses to Searching in the Dark. Got a Blue Light Bulb to Help?

  1. Christy says:

    I hadn’t heard of the oxygen chambers- sounds interesting. I agree that it would be torture trying to get an active preschooler with claustrophobia to get in something like that though.

    I know what you mean about how frustrating it is. I’ve always thought that at least with other medical problems or conditions there is a prescribed treatment plans. You just follow the steps and are fine. Not so much with autism- with us it was pretty much like yeah, he does have autism, good luck with that, you can go home now. And then we were alone with it all.

    So glad I’ve met all of you bloggers. It really, really helps.

  2. jnettlee says:

    Good post, Karen. We spend our lives studying and researching, don’t we? So many questions, always. So few real answers. Some things work for some kids, but not all. Trial and error. Keep doing what you’re doing, and never give up the good fight for more and better information !

  3. You paint a very nice picure of the the eccentric side of Autism, turkey in a Hyperbaric Chamber, and Dino-Undie boy…:) Love it.

  4. Heather says:

    I’ve been dying to try HBOT (hyperbaric oxygen therapy) with Brian- but financially it hasn’t happened *yet*.

    I love your post- each blue light is yet another person to bring to the table (i hope) and throw ideas off of each other.

    I’m not sure how willing you are to jab your child (i was really NOT willing at first) but I just started Brian on B12 shots about a week ago now and he has been talking up a storm the past few days- coincidence? I’m not sure…

  5. Susan says:

    Reading your post reminded me so much of how I felt when my son was pre school age. He is also on the high end of the spectrum and has average intelligence (above where mathematics and computers are concerned) He started pre school with an aide but when we moved to England from Scotland he lost all the help (different councils are better than others in the UK at providing services). He started proper school, part time at first, with staff who were very understanding and got there slowly.

    He is now 14 and at high school, coping better than I could ever have imagined..we still have ups and downs, but he is doing well in class, has some friends (ok, they call him their friend but sometimes dont think he would notice if they just disappeared), he has developed a dry sense of humour (another thing i never thought he would achieve) and is now talking of his plans for going to college to study computer game development.

    He still has a very limited diet, its still a battle to wash his hair and get it cut, he still needs time to himself after a day at school or a busy day, still hates new clothes etc..but can now picture him at college, getting a good job and living independantly (with me checking he washes lol)..something i could never have imagined when he was your son’s age..

    So stay strong and take it one day at a time…it does get better xxx

    PS..he also has an amazing memory, last year he described a caterpillar birthday cake he had for his 3rd birthday, right down to the colour of its eyes!!..i cant remember, but sure he is prob right 🙂

  6. Erica says:

    A friend of mine attended the 2009 DAN conference in Dallas, TX where studies were presented that showed HBOT to be ineffective. Those reports are also online, for what it’s worth. And so it goes… sigh. :-/ In the end, we each just have to try what seems reasonable to us, and hope we can find something that helps our children in the process.

    The year before kindergarten is a hard one for most of us, I think, because there is often so much uncertainty before the actual transition takes place. Once they do get on the school path, though, and you can kind of see down the road a bit, it gets easier. Hang in there! 🙂

  7. Big Daddy says:

    We’ve been down that dark well ourselves before. You can never know or do everything. We’ve done our best but there is always more. Sounds like you are doing just fine.

    That said, I want to have somebody feed me turkey in a hyperbaric chamber thingy. Better yet, just feed me pizza in bed.

  8. Lizbeth says:

    The answers will come to you. You know him best and will know what to do…we struggled with this one and did a tapered start to school. Gradually increasing his time there and by, like, Christmas he was worked up to going 1/2 day. When it got to be too much we brought him down to 4 days/week but kept the time at school per day the same. Hope that helps some–L

  9. Melody says:

    You know what’s best Momma. Your instincts and your research are spot on. That is what we do as parents of special needs kiddos, we research and learn what is best for the rest of our lives. Sometimes I think I could likely end up with a PhD at the end of all this (wait, is there an end) if I could only keep track of it all and put it into some cohesive body of knowledge to present to some willing program of excellence. lol 🙂

  10. danidawn says:

    I have heard of both of those studies, as well as many more. We will go to the ends of the earth to do what we think is best for them.
    As far as the kindergarten thing, I do not have Patty enrolled either, nor do I even know if she will have the same level of services she gets now. I pray she will be able to stay in the same program she is in now.
    I am so greatful for all the support I have found through searching, researching and relationships I have formed on Twitter.

  11. Broot says:

    I figure anything is worth trying if it isn’t going to do any harm. And I think extra turkey and a hyperbaric chamber (if done properly) won’t do any harm. 🙂

    And just like the people above have said – you know him best, so you have an excellent idea of what will work and what won’t. *hugs*

  12. eof737 says:

    Karen you are doing plenty and the right things. I do think it is not a bad idea to ask the questions of his doctor and teacher and request some answers.
    I love the humor in this line… “I want to feed him turkey in a hyperbaric oxygen chamber and he wants to run around in his dino undies, playing with a toy chainsaw with eyes.” find a moment to enjoy the ridiculous and laugh… You are doing a great job! 🙂

  13. Karen — I so completely sympathize with you on this one. Working with the MERLD diagnosis for Kaia, I’ve been digging for any research I can possibly come up with… and mostly coming up empty handed. I’ve been supporting the autism awareness cause because I’m desperately hoping that the light will spread — even just a little — onto related neurological disorders like SPD, ADHD, etc.

    Here’s to burning our blue light bulbs all year long sister!

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