Autism As A Whole: behavioral

Showing posts with label behavioral. Show all posts

Thursday, May 17, 2012

Just Going Through The Motions...Part III

Unknown 5/17/2012 0 Comments

Since it is Throat Punch Thursday and I have many people I would love to have my way with, I think I will continue with my medical mystery!! When you first start visiting doctors you are determined to fix things and excited to see a new doctor to get a different perspective. The determination doesn't go away but as you keep being derailed and detoured you end up losing faith in them. Them meaning the doctor's of course. Do you ever wonder where these doctors get their medical degrees from? Some of the things these specialists have said to me were ignorant and caused me to question their judgement.

After the Orthopedic appointment, which was on the 2nd, we only had a few days to relax before another road trip. At least it was closer and only required a hour and a half drive. He was calmer but this was going to be an all day trip. The Neurosurgeon wanted to have an SSEP test done. From the SSEP, a neurologist is able to determine the time it takes for nerve fibres to relay a stimulus from the point of stimulation (wrist or ankle) to a detection site on the scalp, neck or back. By analyzing the SSEP pattern, the neurologist can get an idea of how well these sensory nerves are working.

Everything I read said that it was pretty non-intrusive and the doctor said it shouldn't be painful but it was a long test. It lasted four hours!!! They tested his arms and legs so it was two hours per section. Chucky Cheese was not having a good day either. He peed himself when we were trying to get things set up which worked out actually because we then suggested he put a robe on. He hates clothes so it wasn't that hard. It was the rest of the test that was a challenge. We started with his legs which seemed to really bother him. He was screaming and I felt so helpless. I wanted to pick him up and tear the wires off to leave but we needed the test done. Arms were not that big of a deal. He didn't seem phased by it. Thankfully that part is over. Now for the results. Thinking about them makes me want to cringe.

It isn't that I want something to be wrong though. I know something is wrong and I hate the process. His arm nerves are normal. Yippeee!!! But... remember I said he has a really tough time with his legs? The results were inconclusive due to "child was uncooperative". He wasn't uncooperative. He was in pain!!! Whatever.. Neuro-surgeon does not want to mess with the syrinx now. He doesn't think it is necessary. Ugh.... Now we had to eat and head to the next doctor for the day. This is getting exhausting!

We arrived to the urologist's office and the "intern" was talking to me when he comes out with,"Well, Autism isn't a neurological disorder so maybe there is something going on neurologically" WTF!!! Where do these people get their degrees???However, they don't feel his incontinence is behavioral and would like to do an ultrasound of his kidneys and bladder as well as a Urodynamics test. The last one requires him to be catherized which in my opinion is VERY intrusive. UGH!!! The neuro surgeon will then see the tests and decide accordingly if he feels the syrinx is an issue. In the meantime we wait and worry.

The neurologist called and says she does not see a huge issue with him and it is so frustrating. I have notes from the school, severe behavior regression, test scores from his tri-annual and his leg looks odd. How much do I have to give them. I travel all over the Northeast and still haven't gotten anywhere. Hopefully, if I can find a place to stay in Boston, we can go to the appointment with the neuro-geneticist and Orthopedic at the Boston Children's Hospital. I am still awaiting an approval letter!

So my Throat Punch Thursday goes to doctors. They would rather blame it on Chucky Cheese's pre-existing condition then looking deeper at what is going on!!! I need answers and I am exhausted and drained. He is sick of all the doctors and he is frustrated with his body. It just isn't working right for him. We will get through this as we always do, but it is getting harder to cope. Thanks for listening and reading. I will continue this when I find out more. Please keep us in your thoughts and hopes for answers and relief. His Triannual is on the fourth and that means I get to deal with all of it face to face. Overwhelmed I am but I think I am ready. Oh, It's my birthday!!! Woo Hoo!!!

Tuesday, August 16, 2011

Stress..... Change......Children

Unknown 8/16/2011 0 Comments

Well, summer school has ended and the chaos never seems to end. I clean, they mess, I clean again. Physical fights and screaming throughout the day. I am not sure how every other parent does it without losing their minds. Any thoughts? I went camping with some friends and all of my children and it went pretty good. At least better than expected!! There were a few meltdowns but they were manageable. It seemed to be a stressful trip for me though because I was walking on egg shells not sure what would trigger them.

Nevertheless, we had fun and the best part was the kids faces when they went swimming in the lake. Chucky loved the Orange buoys. My camera broke when we were there so that is an extra stresser cause I don't have enough right? Chucky has been having toileting issues as of late and I am not sure how to handle it. He is wetting himself throughout the day. Isn't regression great? I am so excited to clean pee off of every floor in my house. Yippeee!!! Sorry for the sarcasm but I did say I was stressed.

I haven't been blogging as much cause it is so hard to concentrate anymore. I cant sit here for more than 3 min without an interruption and then I never seem to get back. When I do, there is other things on my mind and I just cant write. I hope this gets better with school coming up and I can sit down and maybe finish some of the 50 drafts that I had started but couldn't finish but don't hold your breathe. I just wish some of this craziness would ease off for a little while. Well, that was a scream crash boom...... Gotta go!!!!

Monday, January 10, 2011

The Opposite of Ignorance is Awareness

Unknown 1/10/2011 0 Comments

Last night as I was doing a little grocery shopping with Chucky and Pumpkin at Hannaford a woman approached me asking about the device my son was playing with. I explained that it was an iPad that he got for Christmas . She asked what it did and inquired if they were for children. I told her that we use it to help him communicate and also to teach him. They are not just for children but many children use them. I did NOT mention that Chucky had Autism. It didn't even cross my mind to tell her this.

I question myself about why I didn't take the opportunity to educate her about my son's diagnosis. Why not educate an open ear? Was it for fear of rejection or maybe just an avoidance of the topic? Although it may have seemed like a perfect situation, at that moment, I didn't need to. He was calm and was watching Curious George. I don't feel there is a need to point out to everyone that he has some difficulties. I want them to know him for who he is and his name is Chucky Cheese not Autism. The woman continued to chat about her son and Curious George and the iPad when my son began flapping and screeching.

It was at that moment that my heart dropped and I felt like I wanted to run in the opposite direction. Instead I tried to calm him and maintain the conversation despite my fear of a rude ignorant comment. I misjudged the woman and I am sorry for that. Instead of making a nasty comment or judging my son she calmly asked me if my son had Autism. Yes, you heard me right. She asked me about my son without coming to her own conclusions and without making false judgement.

This is the first time I have encountered someone that was able to question the behavior without judging my parenting and being critical. My offering the information wasn't needed. While I was cringing and looking for a quick exit she was connecting and inquired. Maybe she saw the instant fear of rejection in my eyes or the look of complete tenderness in my interaction with him, but she got it and was compassionate. I appreciate this and encourage anyone who is unsure about a situation to ask. It feels better than to have someone gawking or making rude comments.

This lady made my day. Not only was she open to attempt to converse with my son but she was also open enough to ask questions. She wanted to know more which is how we spread awareness and how we open the doors to acceptance. The story doesn't end there because she also looked at me and expressed how wonderful she felt I was doing with my son. This made me feel as if I was invincible even if that invincibility only lasted 5 minutes. It was worth it. So, to the woman in Hannaford I must say thank you. You gave me more than you could ever know just by asking a question and exchanging kind words and a smile.