test results and future appts

We just finished the IEP in two 2 hour meetings. Geez.  We have goals in place and up to date testing completed. Calvin still qualifies under Other Health Impaired but we added ED as a second category.  One of the funny things reported in the IEP was Calvin saying he "never has baths or showers"! Ha! He wishes. It is a fight to get him cleaned up once or twice a week and it is a not so secret dream of his to never have to shower. Come summer that dream kind of comes true since we count swimming as close enough. Sometimes I even take shampoo down to the pool for him. :)

Anyway, school is going well, generally speaking, for Calvin. We are lucky to have him at a school where he appears to be achieving stability and enjoying some measure of success.

June 6th we have our appt with the neurologist to discuss results of the video EEG.  However, on the last day of the video EEG last week, the dr. who discharged Calvin from the hospital said she reviewed the entire test did not see any epileptic discharges during his stay, meaning that his seizures are well controlled with his current medication - and that his behavioral fits are probably not results of sub-clinical epileptic activity. There were a few other things discussed but I will wait until we have our real appt to see what shows up on the official results before writing them here.

Knowing that. we are going ahead with the next step which is an appt with Dr. Max, a neuro-psychiatrist in town. The only bummer about him is he is a pay out of pocket guy and not contracted with any insurance. The first visit is 3 hours at $340/hour. Makes me thankful for our great insurance that covers almost everything else we do. We have had great insurance our entire married life!

We also have our appeal meeting with the regional center to try and get Calvin accepted there. I spoke with a representative at area board 13 and they gave me a few tips going into the meeting. If we don't qualify under epilepsy she recommended we ask  to be considered under the "fifth category" (not published anywhere) which is for children who "present like a disabled" individual even if they lack a compelling diagnosis. In my onion whether it is through epilepsy or this other category I think we should be accepted.

We also recently started working with a new behavior agency. Our case manager is a man, Matt.. I really like him. I also like that he is a man. Calvin responds well to men.  He has put a plan in place and we will work 2x a week to start. Once we are in full motion we will hopefully be able to cut back a bit.

Life is busy.

Another thing that has been on our mind a lot lately is how to achieve balance with Calvin's special needs and those of our other children.  We have been told more than once that the heaviest burden of a special needs child falls with the siblings, not the parents. Given how overwhelmed I feel I honestly cannot imagine that it is worse for the girls. It pains me to think of it.  The new behavior therapist, Matt will be doing is setting up a behavior plan for all 3 of the kids (who are old enough to participate). The girls often feel left out and say "no fair" at all the attention Calvin gets when he goes to OT and receives rewards for simple tasks that they do daily, which are a struggle for him. I have explained to the girls that Calvin's brain is different and he has different goals than they do and I hope that they are strong enough and resilient enough to accept this without being bitter and resentful throughout their life.