Today I explained all the different ways I had thought we had problem solved his situation and helped to make him happier again, to one of our case workers. It is a bit daunting to have worked through so much and still have no answer. In reality until Simon can communicate with us, we won't really have any answers will we?
We took Simon to see a "behavior" doctor because we wanted help with his hitting himself. when Simon is upset he will take both fists and punch himself in the face as hard as he can. when you grab his hands to stop him, he picks up his head and throws it into the floor. So we thought, hey, it has been 2 years, maybe we should see if some of this could be corrected with drugs, heck, lots of people have their kiddos on drugs and they seem to help.
Well, we started noticing some changes....Simon gave Jon a high 5!! It was amazing. Simon would also stop at the front door and reach for the door knob to say he wanted to go outside, which was awesome. But along with those 2 things came shaking. His arm would just shake sometimes....then it was both arms, then both arms and legs. Then he had a seizure at school. So, we got a EEG and we were told it showed, "epileptic activity", so we waited 3 weeks until we could get into see the neurologist. I was sort of a wreck leading up to that appointment, so much so, that when the doctor said, "that test didn't show a seizure, it just showed Simon is more prone to those than other people" I was kind of upset. I know I should have been happy at that point, but I was like, "what?? Why wasn't THAT explained before?"
We have Simon set to have a 24 hour eeg in December to see if we can catch him NOT having seizures, at least that is my hope. When the doctor told us to schedule that, my hubby said, "dibs" and I said, "whatever, we are getting sitters and we are both going." For the special needs parent, sometimes appointments an hour away are like little mini vacations or the ever elusive, date. I thought my friends, the Schmeeckles, were crazy when they told us that 2 years ago, but we have found it to be very true for us as well. We take time off work, get away from our community, and those we do ministry for/with, and take a small road trip. We have time to talk and hang out alone....at least with only 1, non-verbal, kid, and it is nice. this time we will be checking into the Rainbow House the night before, that place is so amazing....it is another blessing that nearly makes me cry.
Anyway, we have weaned Simon off that drug and I have a week to pray and think about what we want to do, before his next behavioral appointment. To be honest, I am thinking of canceling and just trying some supplements, at least those I would know what the side effects would be, NOTHING.
All that to say, we had thought maybe he was upset because he was having seizures, but that wasn't it. So we took him to the dentist. Because Simon has been gaging and vomiting when we brush his teeth...so we haven't been doing it as much as we should. So we thought, well it could be his teeth. They pulled 2 teeth in the office. They said that he had a cap that was sitting right on his gum :( He also has lots of adult teeth trying to come in but he isn't wiggling the baby teeth out of the way. That night Simon was wonderful, and we thought YEAH!!! FINALLY he is better. But the next day he wasn't better....
The school had been saying that they wanted Simon to wear his hearing aides on the bus because he seemed agitated when they took them out. (full confession, we have NOT been using the hearing aides at home...because we kept losing them) So I thought, well maybe he is upset because we don't' put them in at home. So I put the aides in and he was HAPPY ALL NIGHT. And I thought, YES, this was it, he is fixed. And for about 2 days he was better....then he wasn't. So, I don't know....is he in pain? IS it the teeth? is it his eye? Or is he having emotional problems? Pray that something gets figured out...when he is happy, he is happy, when he is sad, it is the worst thing you have EVER seen.
Simon had a heart check up this week and it was wonderful. I was reminded how much I LOVE his heart doctor. She is amazing, she cares so much about Simon's story. She was one of the first doctors that saw him when he came home, so she can see the before and after and she really really appreciates it. If you ever have a heart problem in Lincoln, she is your lady. Simon's heart rate was down and he still doesn't need his heart cath yet!!
School is going really well. I love that so many professionals care about my son's well being. Simon seems to really like it and it has also been really good for us. I am amazed at what he is doing at school. We had a wonderful parent teacher conference where the speech teacher told me that Simon is mimicking her "MMMM" 80% of the time. WHAT??? WOW!!! She also has been holding up 2 objects and asking Simon to point to the "spinner' and apparently he has been doing that too. Reports like this make me think we need to start asking him to do more at home. But it is also hard because for some reason, kids like to give the ones closest to them the most grief. I can't count the times I have heard, "he was fine until you walked in"....yes he saves his self abuse for me :) The homeroom teacher told me that kids in Simon's class take turns reading to him, and that he seems to calm down and listen to them. I love when we are walking around and kids yell Simon's name and say hello, in the hallway of school or in the neighborhood. It warms my heart.
We have lots of appointments coming up in December so I hope it doesn't snow too badly here... I will do my best to keep you all up to date!
Please pray for us as we deal with Simon's emotions. If it is pain, pray we find it quickly. Pray that God keeps providing for our family as we are going through some tougher times. Thanks for your
I will leave you with some pictures from one of Simon's birthday parties. Simon turned 11 on the 25 of September. He is pictured with his Aunt Rachel who helped him open his gifts....he got a LOT of jeans and pants. We go through a lot of those around here and I can't really do laundry too often. Thank the Lord for used clothes!!!
|Simon will forever share his birthday parties with his father whose birthday is on the 24th and his little sister June, she turned 1 on the 27th!! What a week for our family!! (Ishmael loves birthday parties!)|