A Picture is Worth a Thousand Words

I wish I could find time to write here more often.  I don't know how other special needs mom's manage to write daily. I am in awe of them.  I really am.  I was trying to figure out where my time keeps disappearing to and I decided to lay out Little Man's schedule of appointments, consultations, and therapies.  I finally gave up on doing it in just list format because I kept getting confused and missing things.  So here's my visual representation: items in Red are things that he does at least once a week (some like Speech and OT are everyday), Orange happen monthly or every other month, Yellow at least 2 times a year, and finally the White are one off activities.  (We usually end up with one of those a year.)

Image is a word web created by me

Because we live in the middle of nowhere most of these require at minimum a 20 minute drive - some as long as an hour.  It averages out to about 12 hours a week.  OK - feel less guilty about the lack of blog posts now.  I'm sure that those other special needs mommy bloggers are carrying loads just as large but you know what - this is crazy for anyone!!  We all need a nap!

It is not uncommon for a child with FASD to need care webs as complicated as this.  True we could crop some of the items - he does not have to go to Hippotherapy and Music therapy and Play therapy.  But many  children with FASD would have CPS appointments, and SSI, and other items to fill in.   We do things like that in part because Little Man is not able to participate in soccer, or cub scouts, or other typical after school activities.  We've tried and they just do not work for him.  He really enjoys his time with the play therapist, he loves the music and the riding.  They are his "extra curricular activities."   They also have the benefit of really helping him develop better sensory integration and social skills. So I'm not whining - or at least I'm not trying to.  It honestly did surprised me how much time it all takes added up.   Now if I put up a list of housework and errands I do - that would be whining!

Do You See What I See?

We went to the developmental ophthalmologist for the first time today. For those like me that didn't know the difference between a developmental ophthalmologist and a regular ophthalmologist, a developmental ophthalmologist is an eye doctor who has completed two to three years of post-graduate training and is credentialed as a Fellow in the College of Optometrists in Vision Development, or F.C.O.V.D.  

We made this appointment at the recommendation of his occupational therapist who mentioned that she had noted he has problems with eye tracking and with shifting vision from near to far.  Little Man already sees a regular ophthalmologist and wears glasses.  Since we (and Little Man's teachers) have seen the same problems we've mentioned his issues there but the Dr just assures us his proscription is correct, so we thought it would be a good idea to go ahead and get the developmental screening done.  He clearly has more going on than just visual acuity problems.

As expected Little Man showed signs of learning related vision problems in his screening.  If anyone is wondering if someone they know may be having problems, the symptoms of learning related vision problems include:

• Headaches while reading or writing

• Blurry vision when reading

• Difficulty smoothly reading across a line

• Skipping words or entire lines when reading

• Difficulty copying from the blackboard

• Avoiding reading and writing

• Poor reading comprehension

• Short attention span

• Moving one’s head excessively when reading

• Poor handwriting

• Burning, itching, or watery eyes

• Bumping into things

• Holding books too close or too far

• Squinting

• Difficulty recognizing faces

Little Man was diagnosed with Ocular Motility Dysfunction and Accommodative and Vergence Dysfunction, specifically. This is of course in addition to his overall sensory integration issues with coordinating visual input with spatial, auditory, motor, or tactile stimuli.  I can’t say we are surprised.  Issues with the formation of the visual system (and the ears although that is a whole other series of posts) is common with FASD.  Up to 90% of children with prenatal alcohol exposure show ocular manifestations (Strömland, 1985, 1987)

So now we are trying to find some way to fit regular follow up with another specialist and weekly vision therapy into a schedule already crammed with OT, PT, Speech Therapy and too many specialists to remember without “the list.”   I am never ever unwilling to do anything Little Man needs. I sure do wish there were more hours in a day though. Sigh.

Exercise and FASD

I recently read a review of  SPARK: THE REVOLUTIONARY NEW SCIENCE OF EXERCISE AND THE BRAIN by John J. Ratey.  In the review written by Rich Haglund I was caught by this particular paragraph:

Participation in … physical activity before school started led to significant academic achievement. On the Trends in International Mathematics and Science Study (TIMSS), Naperville students finished first in the world in science and sixth in math, behind Singapore, Korea, Taiwan, Hong Kong and Japan. Because Naperville is a “demographically advantaged school district,” Ratey looked at poorer communities where Naperville-style PE programs were applied. In Titusville, Pennsylvania, similar results occurred. Since implementing the program, scores in Titusville went from below the state average to 17 percent above the state average in reading, and to 18 percent above in math.  

I was hooked and went looking for more information.  I hoped to see if there was any cause to think that this general result would prove applicable specifically to children with FASD.  In the words of John Ratey himself I found this:

“Exercise turns on the attention system, the so called executive functions-sequencing, working memory, prioritizing, inhibiting and sustaining attention…. On a practical level it causes kids to be less impulsive which makes them more primed to learn.”

Yowza – sounds tailor made for the FASD brain doesn’t it.  Anytime something sounds too good to be true I like to dig further to see who the source is and if there is more than just their voice.  John Ratey is an associate clinical professor of psychiatry at Harvard Medical School so I am pretty comfortable there.  I also found information on research by Dr. Brian Christie, a neuroscientist at the University of Victoria into the Exercise / FASD link.

Dr.Brian Christie  (link to the article) and Dr. Chris Bertram are hoping to prove that exercise and use of motor skills strengths can positively change the FASD brain specifically.  They have already completed animal studies on this connection and currently have a study of the impact on human subjects going on right now.

In the documentation for their animal studies they note that exercise has been used to improve the brain in other brain disorders and to help those with traumatic brain injuries for years, with much success. So logically it should follow that the same could work for FASD. You can find more info on their current study here .  They are using cardio bikes connected with video games to hold the childrens' interest in exercise for the required length of time. 

In their animal models of FASD, the scientists behind this study have been able to significantly reduce neurocognitive deficits by having animals engage in regular cardiovascular exercise. The results are dramatic, and are coupled to an increase in BDNF (brain-derived neurotrophic factor). In the present study they hope to take the first steps to translate this work into the human realm.  I only wish I lived close enough for Little Man to participate – from the video they have posted of the game element he would love it and even if it doesn’t yield the same spectacular results in humans that it does in mice *** it couldn’t hurt.

Unfortunately we don’t live anywhere near there, so what can I - as parent - take from the research that is being conducted into exercise, motor skills, and the brain?  Well there are a few things I can do right now:

1. Make sure Little Man is getting enough exercise, at minimum one hour a day. 90 minutes is actually the amount recommended by doctors for ALL children so that may be an even better goal for our children effected with FASD. (I’m betting this won’t be a problem for those whose children also have ADHD)

2. Build on Little Man’s strengths. Allow him to do physical activities he is good at instead of insisting on practice of skills he doesn’t have.  Little Man LOVES to run.  His ball skills for kicking, throwing, catching, bouncing etc. are not so good.  I know at school they make him work on dribbling, hand and foot, and playing catch.  Great, good – for skill development but for just getting the heart going and neurons growing – hell let him RUN.

3.  Pick up and read a copy of Spark to see if I find more ideas!

*** Unfortunately, it is not expected to be AS successful in humans since our brain structures and function are so much more complex but it is still expected to yield positive results.  I can’t wait to see the outcome.

So tired!!

Sorry guys - its been a busy few days here and today is just not going to be the day I catch up.  Little Man had a flare up of the infection around his eye that is a lingering issue since he broke his nose early this year.  We went to the emergency room last night to go through the disgusting process of draining it off.  Normally that could be done at the Dr's office but it built up so fast we were afraid to let it go overnight.  We definitely don't need a rupture of the skin which just allows more infection. 

So mama had about 3 hours of sleep last night and spent most of today chasing around at follow up appointments, getting multiple scripts filled - looking for specialty glasses that allow him to see but do not put any pressure on the  bridge of his nose where the infection always seems to start from, etc.

If its not one thing its another.

What can you do?

Little Man had surgery today.  He broke his nose this spring and as a side issue to that he developed a cyst between the bridge of his nose and his left eye.  After multiple rounds of antibiotics and draining the fluid from it by needle once, the doctor finally decided the only way to fix the issue was to put him under general anesthesia and excise the cyst. 

I think any surgery for a child, no matter how minimal, is emotionally fraught for the parents.  I may be biased but I think with a special needs child there are – well - maybe not more worries but special worries.  Because Little Man understands and operates younger than his 6 years it was very hard to explain to him what was going to happen.  I know his ENT doesn’t see him enough to understand his limitations so it’s not all that surprising he was unprepared for how freaked out Little Man was by the anesthesia mask.  I did warn the doctor that although Little Man listened calmly to his description and seemed unconcerned, that it was not going to go smoothly once we were in the operating room.  I don’t think he fully believed (or maybe just did not fully appreciate the magnitude of) my warning until I was pinning my screaming, flailing son to the gurney while he and the nurse tried to still his thrashing head enough to get the mask in place.  I cried the whole time I pressed his little body down and sang his favorite lullaby and eventually he succumbed.  I then cried my way out to the waiting room. 

Unfortunately - in addition to the delightful start to the process - Little Man had a reaction to the anesthesia and stopped breathing during the surgery so they had to intubate him.  What was supposed to be a 30 minute procedure ended up taking an hour and a half in the procedure room itself and four hours in recovery.    Little Man appears fine now, other than a sore throat and some itchy stitches (and he would have had the stitches regardless).  Mama however is traumatized by guilt - for restraining him while he cried and begged me to help him and they gave him the gas that could have killed him, by the scar he is certain to have, and by his pretend play since we got home, where he holds down his screaming teddy bear and smothers it with a pillow.  So much of my parenting is second guessing.  Is it like that with neuro-typical children?  I don't have any so I just don't know.

What could I do though?  I could not leave the cyst unaddressed.  We had tried that for months and at one point it swelled so large that it was affecting his vision.  That is when they did the needle draining.  Maybe if we'd done this sooner he would not have the scar.  It would not have gone any easier but I didn't gain anything by waiting either.  I guess I could have let strangers restrain him.  But wouldn’t that just be sparing me – not him?  I guess I should have tried harder, more, longer to make sure his specialist understood how the process was going to effect him emotionally.  I get so tired though of educating sometimes - especially the doctors and educators.