Tuesday, September 28, 2010

Nate got in trouble......

Every day, I get a note in Nate's backpack telling me what he had for lunch and what he had for snack. We use this information to ask questions about his day. We usually start with concrete questions about his lunch and snack. We are working on his ability to answer questions about his day.

Yesterday, his note said that he did not get snack. Apparently, he did not use his words to ask for a snack. He had to sit there and watch his friends have snack without him. I think that's great! Even though he is special, he still needs to follow directions and be help accountable for his actions or, in this case, lack of actions. I can't think of a more meaningful consequence for him than to have to watch his friends eat and enjoy a yummy snack.

Today, Nate did not come to line up at the end of recess. His teacher had to call him several times while his friends were lined up and ready to go inside. When Nate finally came over, his teacher made him sit down and told the rest of class to go play more. Nate had to sit and watch his friends get more play time. His teacher told Nate that when it's time to come in, he needs to listen and follow directions. Again, a very meaningful consequence.

I applaud Nate's teacher! He has to learn and sometimes it is difficult to dole out a meaningful consequence to someone who is impaired. We expect Nate to follow the rules and expect him to have consequences when he doesn't.

Tuesday, September 21, 2010

I hate autism because........

Nate is sick.....we didn't know he was sick....he seemed just fine. His teacher emailed me yesterday that Nate didn't eat any lunch and fell asleep during Music Therapy. This is not like Nate, he never misses a meal and has to be medicated to sleep.

I called the doctor and Tim took him in. He has an ear infection that has progressed so much that his eardrum was blistered. Tim said the doctor looked a little upset and tried to kindly ask, "Did you really not know he was sick?" Tim replied, "This is the child who walked around for two days with a ruptured appendix."

So this is one of the reasons that I hate autism......My child can not tell me he doesn't feel well. We have to rely on watching his behaviors and trusting our instincts. I am grateful that the teacher emailed me. I forgot that he was in a new building and not with the people who know him so well. His teacher now knows the signs when he does not feel well.

Friday, September 10, 2010

dental work

Going to the dentist is a NIGHTMARE! Nate and Noah just cannot tolerate it. Noah starts screaming the minute we pull in the parking lot. Nate is getting better. He just says, "No thank you" over and over again. We can still hold Noah down to get his teeth cleaned, but not Nate. So, every two years, we take Nate to the hospital for dental work.

This is not an easy process. First, we call all of his doctors to let them know he will be under anesthesia and see if they want any blood work done. (If he can't tolerate the dentist, can you imagine what he's like with a needle?) We then have a pre-surgery physical. At this physical, Nate was 5 ft 8 in and 156 lbs. He and I are exactly the same size. Thank God he is not violent. I wouldn't be able to control him. Then, I have a lengthy discussion with the doctors to see how they can best help Nate get through the anesthesia.

Luckily Nate was the first surgery today. His procedure was scheduled for 7:45 am and we had to be at the hospital at 6:15. He knew something was up when we pulled in the garage. He really fought the blood pressure cuff today, but put on the gown without a fight. The dentist came in to tell us that he planned on pulling one tooth, taking x-rays, and cleaning his teeth. Nate was also having some fasting bloodwork done. The nurse thought I was joking when I asked for a haircut and a facial......I wasn't! I wanted him to get a flu shot while he was asleep, but the hospital hasn't received theirs yet. I think someone from the hospital should now have to take Nate to get his flu shot.

Two other doctors came in to start the meds. They each had a syringe that they shot up his nose. It took 5 of us to hold him down. The medicine made him groggy, but did not put him to sleep. They came back with a gown, booties, and cap for Tim. Tim had to help get him into the operating room and hold Nate down while they put the mask on him to get him asleep. I still don't think Nate has forgiven Tim.

He was in surgery for a little over 1 hour. They can't start the iv until Nate is out. This time they put it in his foot. I think that was better than the hand. They called us as soon as he went to Recovery. It's very tricky in Recovery. They have to get the iv out befor Nate wakes up and rips it out, but it has to stay in long enough to give him fluids. This time he slept for over an hour after surgery so they were able to leave it in longer. The first time they wrapped the iv and his arm so tightly that he started banging his arm on the bed rail and hurt himself. Nate did not have any cavities....this surprises me. I brush his teeth every day, but his oral motor skills are so poor that he can't pull his lips back far enough to get a good brushing. They only pulled one tooth. Since Nate can't tolerate braces, the dentist will pull teeth from the back to keep the front 8 straight.

As soon as Nate woke up he was ready to leave. He barely tolerated the post op exam from the nurse and was insisting on leaving. "I want bye bye doctor." Luckily, he did not need stitches in his mouth. He has found the wound with his tongue, but I hope that it will be much better tomorrow. He had pancakes for lunch (soft food), but was ready for pizza for dinner.

This was a long, hard day. It was physically and emotionally draining. I think the last person Nate wants to see again is the dentist.

Friday, September 3, 2010

enjoying the ride

Things have been crazy busy with school starting. It was worse this year because my school started before the boys' did. That made it difficult to get into their classrooms with all their stuff and have lengthy discussions with their teachers. We took Nate and Noah into each of their new schools every day for over a week to help the transition.

I am convinced that Southview is the place for Nate. I actually got an email from his teacher last week that said, "Nate fits in really well here." I have NEVER been told that he fits in anywhere! I can't tell you how that made me feel. Even though it is difficult to tell, I am convinced that Nate is happy. He just seems less stressed. I am told that he really enjoys the cooking. They made pancakes on the first day of school and I think he was sold.

Noah is also off to a good start. He has only had tantrums on two days.....the first day (expected) and yesterday when they couldn't go outside for recess due to rain. He also has stayed dry more days than he has had accidents. He has not kicked or hit anyone. He was able to go to the library with his kindergarten class and check out a book. He eats a school lunch in the cafeteria....I am not making his lunch every day and he is expanding his food choices. I keep chicking in with his teacher and she keeps assuring me that his is doing well. I always ask her, "Noah Hill...you know blonde hair, tall....?" I have to wonder if part of the difference is fewer kids in his classroom. Noah is in the "autism room" with only 5 kids and 6 adults. Last year, in preschool, there were 15 students and only 5 adults.

Both boys are receiving two hours of speech and one hour of OT a week at home through Tim's health insurance. That has been fabulous! I also just spoke to a representative at the insurance company that assured me that they would put the Autism Bill into effect January 1st instead of October 1st. The law states that the servies must begin on or before the anniversary date of the policy. I freaked out when I learned that our anniversary date was October 1. That just seems cruel, doesn't it? The Autism Bill will provide ABA for $40,000 per year per child. I am hoping that it will help increase the number of speech and OT visits per year and allow for Music Therapy.

I am not used to things going so smoothly. My boss even commented on how happy I seemed. My reply was that if the boys are doing well, so am I. I am so used to constantly having some sort of battle to fight that I almost don't know what to do. Right now I think I will just sit back and enjoy the ride.