I was going to sit down and let you know about a very important prayer request. But God answered it today. So now it's time to celebrate!!! I am feeling very excited at this moment. Here's the story:
I have been trying to get extra Teacher Assistant time for Mason at school. He has only been allocated 2.5 hours and he is there all day, so that means time has to get pulled from other kids for safety reasons. Although he does have someone near him all the time, 2/3 of the day he and other children share this person. Sometimes there are only a couple of adults in the special ed room, which does not insure that someone is near Mason. As he is having between 8 and 13 seizures per day, he needs someone right there for his safety. Getting extra TA time at this time of year is nearly non-existent. So I knew that getting this would need divine intervention.
The first miracle was finally (after weeks of trying) getting an appointment with the person at the school district, which is slated for this Thursday, April 7. Well that person went to our school yesterday (Monday), and the special ed teacher was told Mason would get one more hour per day, starting today. This is still not full one on one, but will make the end of the day
a lot more manageable and give a little more attention to the other students who also need TA time. Can you imagine getting 7 or so children with special needs ready at the end of the day to go home? I find it exhausting with one!!
And, Mason will get the full time amount for next year!! 5.5 hours. Yeah!!!!!! The meeting is still on for Thursday, but she doesn't know that I know.
Another surprise we got last week, and I need more details yet, is some one time only unexpected funding through Mason's social worker. It is designated as behavioral intervention. There is a contract with an organization that will analyze his behavior and figure out strategies to work with him.
So, wow! Isn't that exciting?? God tends to do the unexpected. And to answer this prayers early, well, that's unexpected!
So some of this very thrilling news came on a very difficult day. Yesterday morning Mason had a 45 minute seizure before school. It consisted of two seizure types, blinking, and myoclonic jerks randomly throughout that time. These happen several times per day, but not often that they last that long. During this time he smashed his chin on the bathroom sink so hard that he
has a big scrape on the bottom of in. I heard the smack and it sounded awful. I was only an inch away from him and could not prevent it. That jerk came on so suddenly. The duration of this seizure made us miss the bus, so I drove the kids to school. When I got there, there was a van
blocking the handicap parking spot, I showed the woman my handicap pass, and she refused to move. She ended up moving back a foot or so, but not nearly enough space for me to get through. Then she took her child in to the school. This is also a drop off only lane. So I sat there waiting in shock and disbelief. When she finally came back, and left, I pulled in and burst
into tears. I had to go into the school that way. Beat red, face wet (I couldn't stop crying, nor could I wipe my tears for holding onto Mason and his stuff). someone asked me if I went and talked to her. No. I was actually speechless, believe it or not. That's probably a built in
mechanism that kept me from tearing a strip off her. I was a smidge angry.
Then at the end of the day, Mason had a strong Tonic seizure (stiff for 45 seconds) where he has difficulty breathing, smashed his head on the computer where he was sitting. Poor kid. I picked him up at school, where he was still groggy half an hour later from it.
Several weeks ago he also started having Tonic Clonic seizures. (Grand Mal) So now he has five different types on a regular basis We continue to mess around with his meds. He may have a day or two here and there that go down to 6 maybe, but medically he is not in a good place right now. His behavior was extremely bad a couple of months ago. Very hyper. And generally difficult. So much work. That has been easing up, and I actually enjoyed him over spring break! Christmas was that last time that was possible. He is still a lot of work, but does have longer periods where he will play well. (it was down to about 20 seconds attention span to play, for several months)
If you are interested in learning more about Mason's type of Epilepsy:
http://www.epilepsy.com/epilepsy/epilepsy_lennoxgastaut.html
What I keep finding interesting over the years, is that even though this medical problem has not gone away, usually in those darkest hours, there is an amazing, unexpected banquet that comes before me. Cool, eh?
Even though I walk through the valley of the shadow of death, I will fear no evil,for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. Psalm 23
a wonderful husband, special daughters, and a cheerful-in-spite-of-it-all
son. Add to that all our friends and family supporting us like this.
Blessed be the name of the Lord!!!
No comments:
Post a Comment