Saturday, November 8, 2008

Bry Bry... (Be warned this may be long.)

I thought i would blog a bit about "Bry" more for my own sake to "think" over some of the "things" that may or may not be going on with him

When Bry was just over 2 yrs old the Family Practice Physician Assistant that I saw called me one night (from her home).  A few days earlier I had seen her for some reason or another.  I love Mary and miss her deeply.  She was always right on the money.  Why she wasn't a doctor is beyond me.  I know she was pationate about her work, I know she loved her patients, I know she saw my family, the crisis that we were in at that time and acted upon it.

It wasn't a very good time in our life.  Few months before both my dh and I had gastric bypass.  I had several 'issues' post operative that led me to be seen in her office many times.  Each time I had in tow a 2 yr old who was always crying.  If there was to much noise.  If there was to much 'movement and/or commotion'.  The crying never ceased to stop.  If it were just him and I at home - well it would stop.

Mary had tried telling me from time to time maybe we should have him evaluated.  I just thought it was due to the extreme stress going on in our life at that time.  This particular time when she called she says something like this...."Gala, I've been thinking a ton about you and the kids.  I'm concerned for each of you.  After thinking about it for a long time the last few days I decided to make a few appts for Bry and Ab...please (she must have said it 10 times) please...please...don't be mad at me.  If you don't want to keep the appts. you can cancel or let me know and I will cancel them for you..."  She made an appt for both of my children to see a pediatric neuro-psychologist and neurologist.  Ab was having some issues in school that seemed (still does at time) that she might have had an auditor.y proccessing disorder.  I keep the appts because well...there might be some hope after all right?

Well, what the neuro-psychologist said got the ball rolling.  He called the Birth to Three referral line while we sat in his office.  With in a few weeks we had Birth to Three coming in to evaluate.  We had all kinds of different things going into place.  Sensory Proccessing Disorder was most likely a definate and just observing him he could tell the tell tale signs/symptoms that he exhibited.  Because of his age it made it harder.  We saw the neurologist a few months later. She echoed everything the first doctor said and then some.  While in her office she just sat and watched this child and shook her head.  Saying "he has no sense of saftey boundry, no boundries about what is around will need to be very vigilant with him especiallyy during his younger years because he could get hurt...seriously hurt"...

Over the last few years we have implemented, tried, tested, ect ect many things that would/could help this child.  We have found the thiings that work and used them .  We have found what didn't work and said 'forget it'. 

The one key thing that I believe strongly in is the occupational therapy.  By the time Bry was just over 3 yrs old he had used ALL of the OT he could EVER use for our specific insurance. He had maxed out the 35 life time visits.  We were told "that's okay...he can get OT at school".

True - he does. However, nothing like he did at the clinic he used to go to (where I also used to work until last summer). 

He loves school.  Does as good as he can in school.  Last year at the beginning of the year we had some issues with biting.  I firmly told the principle to NOT CALL me again and tell me my son had bit someone when it was clear to me his IEP was not being followed.  My son had never in his life bit anyone and I found it very upsetting that he now goes to Kind. and starts biting.  IT was BS in my ever so humble opinion.  Interesting enough - Bry never bit anyone else again at school to this date.  hahaha....

It is clear to us that school on many levels is very good for Bry.  He loves children. He loves playing.  He seems to love learning. 

The part that is so hard is it is to much 'input' into his brain. 

Last May we had to have him re-eval'd by the neuro-psychologist in order to keep his IEP services. Because S.I.D. is not a dsm true dx... he 'dx him with something else'.  Was very very clear in his report to the school that this child does not, nor will he probably ever need medication. He creates enough natural stimulation on his own...  His dx is "ADHD sub-type secondary to severe sensory integration dysregulartion problems".  This was only because on the SID alone he would not have qualified for school services.  He fits the less than 10% of popluation who has ADHD as a secondary dx because of the sensory problems.  What does this mean...really....nothing. It means that I have a child who appears to the general person as being naugty, not listening, just being off the wall and crazy....

To me - it is frustrating and heart breaking all in one.  There are many days I don't know what to do becaus I'm so frustrated and get so mad.  Then I feel guilty because I know he can't help it.  One of the things that has been and still remains a huge issue is parking lots.  He bolts to the car or store w/o looking, never stops.  Time after time after time we have told him, grabbed hiim by the coat, yelled, scolded, taken away no avail.   Some days I 'm able to remember that htis is truly a problem and he needs lots of help and other days I just get pissed off because why did I just tell hiim to stay next to me and now he is 10 cars away running to our car int he cold, rainy dark night....

I know that these things happen a lot less when....
He has not been in school.
He has not been in a situation where his engine is already really high.
He is with just me or my dh...
and many other things.

Every day we pick up a chidl who is crying.  Well, now we dont' .  His babysitter does and he holds it together even while Luke is here w/them.  However, as soon as we get home from work and school - he lets out and it can go on forhours.  If w have to run to the store or go out to eat - most times at night it drives us very very batty because he is so off the wall, and/or crying or something.

I have thought that HS might be a good option fo rhim. I've doen research. I know there is a strong HS group in M where I live. i know that we could socialize in a good way and my  kid would learn so much.

The issue is-- I work. My dh goes to college, graduates in December and most likely will go back o work.  Part of me thinks that he...dh could realistically - HS Bry and it would be a great thing for both.

We ahve talked to his teachers.  They all say he is doing farily well.  Of course he doesn't cry at school because that is not cool....right?

This got a bit longer than planned.


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