Doctors and Dentists

The reality of Autism is even when gains are made- and they feel really big- they can seem small in the big picture. While Robbie has made gains in communication and language, there are still areas that we struggle in. While at the pediatrician this week I was told Robbie is physcially in great shape- but he stressed physcially. At 7 years old Robbie can not "read" the eye chart- or stand still long enough to follow the directions. He will not allow anyone to take his blood pressure- even though at every appointment (Neurologist, Gastroenterologist, pediatrician) someone tries. To give a shot he needs at least 2 people to hold him down, as he will kick and scream. He does not really have friends. That was a question I was surprised to be asked and sad to answer. Of all the doctors appointments- the dentist is the worst. Yes- no one likes the dentist but for most neurotypical children it is not that bad. Lexi will sit and allow them to clean her teeth knowing she'll get a new princess toothbrush and a toy at the end. Robbie screams and runs.(And his dentist is wonderful with him, as wonderful as she can be) She is patient and quick. This morning we had an emergency trip to the dentist due to a toothache he had been complaining about for 3 days. This morning was the worst. He tried to open the car door while driving, was kicking the seat and crying for his blankie and bear. It was difficult to calm him down. Once at the dentist he cried in the parking lot but seemed ok once he saw the toys in the waiting room. Then- it was our turn to go back. He followed the nurse- for about 2 seconds and then screamed and ran. ( The poor children in the waiting room) It took about 10 minutes of maneuvering from myself, the dentist and nurse to get Robbie in a room. I agreed that holding him tightly was the only way the dentist could get a peek at his teeth. Long story short, at least 1 cavity, 6 year molars coming in and a few other dental issues. Robbie will need to go to the hospital operating room and be put under anesthia for them to work on his teeth. I started crying. Partly because I am very pregnant and full of hormones, but mostly because of a situation that happened a few years ago. When Robbie was first diagnosed I worked in medical device. One of the hospitals I spent a lot of time at had a dental suite in the OR. I remember seeing patients wheeled in who were very unhappy and obviously special needs adults. The oral surgeon at the time very nonchalantly said most were autistic and my child would probably have to be put under for dental work as well. It was a tramatic time and a difficult thing to hear. Now - here we are and all I could think of was those patients- who seemed so much more severe than my son could possibly be. But- maybe not. The dentist misunderstood my tears and thought I had reservations about putting him under for dental work. I explained I know that is we need to do- it just makes me sad. It makes me sad that my son will need to go to the hosptial for dental work. It makes me sad my son does not have friends. It makes me sad my son still has a hard time communicating and it makes me sad that sometimes watching my son stimm and jerk and script movies cause people to stare or worse ignore him altogether. Sorry for such a depressing post- but some days Autism just makes me feel sad.

Another Doctors appointment

Yesterday Robbie and I went to the neurologist. Partly for a check up to keep his records current- yes he is still Autistic- and partly to discuss potential ADHD and anxiety. I am not thrilled with the NP we saw but in their defense I guess there is no miracle cure, pill etc- or someone would have found it. While he is hyperactive his teacher stressed how well he has been doing this year and that while he is hyper he does sit and focus for the tasks he needs to complete. We discussed the same medications we had tried and taken him off and ended up deciding that behavior modification was the best step at this point. We may try something new in the fall or next year- who knows. While waiting Robbie and I were playing in their "playroom". Another boy came in to see what we were doing. He was about 10 or 11 years old and spoke only to me. He asked what we were making ( star wars potato head) and then showed me a few pieces he had found in the toy bin. He left a few minutes later, but he got me thinking. I have struggled with trying to get a glimpse of Robbie's future. I was not familar with Autism before his diagnosis and have very little to compare him to. And- as his new therapist says- Take most of what you know and expect from an autistic child and throw it out the window with Robbie. The biggest heartache for me has been the unknown. For my husband- (forgive me Rob) I think the biggest heartache has been and is what he sees every day. He works with special needs teenagers- many of them on the autism spectrum. Some highly functioning and others..... not so much. He sees his biggest fear every day. Wow- that has to be to tough. Back to the boy I saw in the neurologist office. Previously I could not see Robbie reaching the social and communication level of this child. Today I can. This boy as I mentioned- only spoke to me- not to Robbie his "peer." That is common for children on the spectrum. Speaking to adults is easier for them. The good part is he was articulate and able to communicate. As Robbie got on the bus this morning he said "hi Guys!" to his bus driver and the aid. That is a first. It made me smile. :)

ANXIETY

Robbie's language has been exceptional over the last few weeks. He has been speaking in fuller sentences and answering questions- some of the time. Robbie frequently (every day) scripts movie lines. I have asked him- for years- what movie he is reciting. I have never gotten an answer until this weekend. He was asked on a few different occasions and each time answered with the movie title or character. Why is this such a big deal? This may help us turn his stimming behaviors into learning opportunites. If we understand what movie he is engrossed with- we can redirect more appropriately. For example- if Robbie is reciting lines from The Incredibles ( a favorite) than we may offer to draw superheros or robots. We may find the appropriate action figures and try to engage in imaginative play. It brings us into his world and allows us to bring him back to ours. Why is this piece titled Anxiety? The one constant has been Robbie's increasing anxiety. When asked to complete a task- getting dressed, especially trying on a new shirt, putting something away, washing hands, - there is an immediate "no" response, screaming, running away and you can see the anxiety in his body language. Once he calms down and we explain a few more times what we are asking- he usually complies. The fight or flight response in Robbie seems dramaticly heightened. This is a common thread in Autism. The question is - what do you do? Currently we are trying to slow things down and explain more thoroughly. We use picture prompts if available and also do light yoga and stretching. These tools help. Should medication be next? We had tried a few anti anxiety meds a few years back with little to no success. But that was a few years ago. I am reading a book titled "What color is monday? How Autism changed one family for the better" by Carrie Cariello. The author is a mother of 5 children, 1 being an autistic boy. She writes about the anxiety her son deals with and how medication has helped. There are many similarites between her experiences and ours. I Have scheduled 2 neurologist appointments to discuss options. I am hoping they will be able to guide us in the right direction- although so far they have no answers. Hopefully a little more trial and error and parents intuition will lead us in the right direction to help Robbie maintain a more peaceful existance. Wouldn't we all like that? A line stolen from "What color is Monday" - Because with life, with yoga, and especially with Jack, all I need to do is believe, breathe, and stay in the room.-

Gain and Loses

One of the frustrating realities of Autism is regression. Things will be going smoothly and than suddenly skills seem to be lost or situations you felt were controlled are again- out of control. Last weekend Robbie wanted to go to the lake. I told him we would have to go later because we were doing other things around the house at that time. Rob had also mentioned possibly going to our neighbors- 3 doors down at the end of our street. While the rest of our family and 2 members of our neighbors family were in our backyard, Robbie said" getting my coat." I didn't think much of it, as it was 70 degrees. A few minutes later the woman directly next door told us she had seen Robbie running down the street. Frantic, I jumped up thinking he must have gone to the lake. We screamed his name while running down the street. ( Robbie generally will not answer when his name is being called- but what else do you do?) The man at the next house said Robbie was seen going into the neighbors back yard. I found him walking into their back door. They are 3 houses down. Scary and depressing. It had been 2 years since Robbie had last escaped without us knowing. So- we go back to double locking all doors and I have spoken to our local borough office and local police. However, the opposite is also true. Things will be a bit bumpy and then- a huge burst of skills emerges. Last year at this time we were very frustrated and nervous about behavior and learning. This year- at the same time- things are improving. Robbie's speech and communication has dramaticly improved. It is not where it should be for a typical 7 year old- but the improvement is life changing. Robbie is able to tell us what he wants, needs, and feels. (most of the time ) While there are still times where Robbie is in his own world, he is "present" more of the time. Usually getting him off the bus means me saying " Hi Robbie, how was your day?" with no response from him, or the scripted answer "my day was good." While we are not getting him to tell us about the field trip he went on yesterday ( I had totally forgotten about) he is looking in my eye and saying "Hi Mommy." I can't express the joy I feel at such a small amount of self expression, acknowlegement, presence. It is , sorry to be repetitive, life changing. Not only for Robbie but for me as well. It gives me hope for his future. It also shows all the hard work Robbie is doing and we as a family continue to do is paying off. Small steps but hopefully BIG future!!