if you can't beat 'em, join 'em

For a couple of years I have been somewhat bitter about high functioning autistic children who receive tons of services, are able to function in mainstream classes and are making positive progress with exceptional support and help while I have watched my own child make backwards progress over the course of 3 years move from mainstream school to a position where he will probably never be in mainstream school again.    I have tried to get him supports and services he needs but he has been denied services by insurance and regional center.

Most people who know Calvin assume he is autistic. When we are out in public and he is on the ground crying or throwing a fit we say, "oh, don't worry, he'll be fine, he is autistic" and then people say, "oh, I understand." Calvin goes to a school with a population made up of more than 80% autistic students, all of whom are getting great therapy in their homes to support their difficult behaviors.

Well, after trying for years to get what I need for Calvin through the avenues I knew I finally decided that the only way to help him is to have him formally diagnosed as autistic as well.  While his true disability stems from his brain damage, he shares enough characteristics with the autistic population that he easily fits within the DSM criteria for a diagnosis. Last week he was diagnosed with autism by a psychiatrist.  Now we will (hopefully) move forward with behavior therapy in our home and maybe even re apply to the regional center in a couple of years.

long week

Calvin has a new trick. He falls asleep on the bus ride to school and then is too sleepy to wake up, or is pretending to be too asleep to wake up. I'm not sure. He was legitimately snoring and drooling on a couple of occasions..... who knows

This week so far 4/4 days I have driven down to his school to get him off the bus, or on one day because he wouldn't get on the bus at home so I drove him in. I also did this 2 days last week.  If you're wondering if my house cleans itself or if the groceries shop for themselves while I am gone, the answer is no.  It is a 9-noon affair each day. Sometimes it is 9-noon in and of itself if I get there and he refuses to go in to school; then I just sit in the car and wait for him to decide to go to school.  Sometimes, the 9-noon includes my recovery time afterwards such as walking the beach which is what I have found to be the best way to make the most of driving 30 min down to san diego and not being angry about missing my entire morning.

One of the medications Calvin is on makes him sleepy. We have now lowered the dose twice. So, now we're back to a dose that isn't even effective.  I might try going up a 1/2 dose in a couple of days and see if that is any better.

Could be worse.  I see so many people with many more serious troubles than I have and can't help but feel grateful for what I have. I was talking to a friend this week who has had severe trials in her life. She said she thinks if we all put a shoe in the middle (representing our trials) there wouldn't be many of us that would want to take somebody else's burden.  Each of us becomes accustomed to  the kind of experience we are going through even if it is hard.

There is a 3 part video on mormon messages here that is very good.  It describes how we learn to rely on the Lord for our daily needs. Elder D. Todd Christofferson shares a story when he was going through a personal trial and had to completely rely on the Lord to help him get by day by day. Without this experience he would not have learned this lesson.

I sometimes wish I could be more like those described in Alma 32, "and blessed are those who are humble without being compelled to be humble."  I guess I am one of the more stubborn ones that needs more reminders to be humble.

children's hospital

Today we had a regular follow up visit in neurology clinic. I am always so humbled when I go to the Children's Hospital.  There are so many families with children so severely handicapped. I find myself feeling extremely grateful for the blessings that I have and feel a prick in my heart for ever thinking that my life is too hard.  I look at other parents who are FULL time caretakers. They don't have time for anything else, I see other parents of children who are terminally ill, I see parents whose children never speak, never walk, never progress past diapers. 

obituary

A friend of a friend died this week. This morning I said to Dave, "Oh, we should look up the obituary."

Calvin said, "BITCHuary! Awesome. What's that?"

Mom said, "no Calvin, Obituary. It's what you write about somebody after they die telling how they died and where the funeral is."

Calvin, "oBITCHuary"

I had to laugh. Never really thought about this before but it definitely adds a new twist to reading obituaries!

regional center

Judges decision came this week. He determined that Calvin is not eligible for Regional Center services.

 

I have a 12 page document that summarizes the Judges review of Calvin's file.

 

 Here are the concluding paragraphs:

 

 "The weight of the evidence does not establish that claimant's epilepsy is driving his behavioral problems and as a result, the evidence does not establish that claimant's epilepsy constitutes a substantial disability.

 

Dr. Nespeca, claimant's treating neurologist, was unable to conclude, based on the 48 hour EEG, that claimant's epilepsy is the cause of his behavioral problems. In addition, Dr. Max, the neuropsyciatrist who evaluated claimant following a referral from Dr. Nespeca, specifically found that claimant's behavioral problems were not the concurrent manifestations of his seizures, per se.

 

The opinions of these physicians are credited over Dr. Marshall's testimony......Dr. Max's and Dr. Nespeca's opinions are given greater weight than the opinions offered by Dr. G, claimant's father."

It is upsetting. The main reason it is upsetting is that we feel the judge made a mistake. It isn't that he doesn't think Calvin is too high of functioning, or isn't disabled. It is that he believes Calvin's doctors said epilepsy isn't causing his disability. There, he misunderstands the dr's notes. If I had it to do over again I would have asked Dr. Max and Dr. Nespeca to add a letter describing how epilepsy contributes to Calvin's disability. Anyway, not sure what we're doing next.  Just moving forward day by day.