Autism As A Whole: emotions

Showing posts with label emotions. 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, February 22, 2011

I Am Going On An Emotional Strike!!!

Unknown 2/22/2011 0 Comments

Throughout the past few days I have felt anger, pain, hurt, denial and helplessness. I do not understand why I am feeling the way I have felt and I don't like it. I do not want to feel any more. I just want to be numb. Pass me some tranquilizers. Just kidding, about the tranquilizers but please give me a break. As I stated before Buddy is going to be evaluated and has been diagnosed with Tourette's Syndrome. It isn't the end of the world so why do I feel so crushed. Devastated beyond belief. I don't want him to have these struggles.

I am angry that this is happening and I don't want to accept it. I want him to have it easier and I want to be able to help him. I hate feeling helpless and unable to ease his worries. It is heartbreaking to hear him telling me to stop his head and get rid of the tic. I can't and if I could I really would. I feel like I am locked behind a glass wall forced to watch him struggle with no way of helping him. This is torture. I have to admit it must be one of the hardest things to cope with and I am not doing a good job at it.

I have felt so many conflicting emotions and some that I am not even sure how to describe. I guess it all boils down to the fact that it isn't fair. It isn't fair both my boys have to struggle and it isn't fair that I do not know the answers. I hate wading in dark waters unable to see what is lurking underneath. I do not want to make a mistake. I want to make the right choices. Why can't the answers just appear in front of me. I know I sound ridiculous but I am so done with all of the struggles.

Whew, glad to get that off my chest.....

Saturday, January 8, 2011

Self Injury and Inaccurate Facial Expressions

Unknown 1/08/2011 1 Comments

My son is self injuring again. It didn't stop for long but he picks up something different after a while. It started with head banging, then biting himself as well as others, then pinching his skin and now he skin picks. There are other things he does as well but these actions were very constant. He will stick touch hot things and sharp nails. He also can go outside in the freezing cold half naked.(NO... I don't let him. He slipped onto the screened in porch once or twice LOL) I was really concerned in September because he had made marks all over his arms, legs, and back of neck, so I brought him to the doctor who discussed meds. I am really not sure how I feel about them. They talked about Tenex which is pretty safe from what I have read but I would rather not put him on meds.

Without medication, what do I do to ensure that he does not self injure? I have tried using stickers to encourage him not to pick and I have tried giving him alternate ideas to satisfy his sensory needs but I think it is the feeling that he perceives when he is picking. I am going to try redirecting him to a positive alternative. Not so sure what that may be but there has to be something. He used to have a pacifier and we stopped that because of his speech therapist which is when the biting started. Eventually he was biting his pillow case and now that that stopped he was pinching himself. I would honestly rather give him a pacifier again. I know that won't work now though.

Questions remain and answers are hard to find. When parents talk to the doctors they are so quick to put the child on medication without looking into the root of the problem. I am looking for more natural remedies to resolve this. Last night he was playing with a rubber band. I thought it was okay because he wasnt making himself bleed. That's an improvement, right? Wrong.... instead he left a welt on his arm. He didn't even react to it as if he were in pain. I found this concerning. Although I don't like to make a big deal of these situations to my son I did feel it would make a great awareness video for others to see first hand how a child on the spectrum's words, and facial expressions can mean two different things. Here is the video of my son when I asked him how it felt when he flicked himself.

I told him that it wasn't nice to hurt his skin and that it makes mommy sad to see him hurt himself. I am not sure that he understood and I am sure that I will have more situations like this in the future but at the moment I will continue to encourage him to engage in positive ways to stim. I think this is a stim. Any thoughts on this???

Wednesday, January 5, 2011

Wacky Wonderful Wednesday-01-05-10

Unknown 1/05/2011 0 Comments

Hello again from Wacky Wonderful Wednesday.

There aren’t many rules for this hop I just want you to be able to take a moment in the middle of your week to reflect o some happy or funny thoughts. Yesterday was my Dad’s anniversary for the day he died. It was a really tough day but my son made me smile so I must share.

We have a Facebook friend who has adopted our family. She is a wonderful person and very caring. Around October Chucky Cheese was having a really hard time and was skin picking. This is a self stimming behavior that soothes him. It is also self injury. He had so many digs in his skin and I couldn’t get him to stop. We started using “Magic Stickers” and after a while this was working. When Nana Tammy heard he was doing better she sent him a Trick or Treat booklet of coupons for McDonalds to reward him.

When the envelope came in the mail I explained who it was from. Nana Tammy is his adopted Grandma and Heaven is her daughter. When I said Heaven he got very confused. He started asking if she was dead and in the ground. I explained it farther to him and I think he understood.

Yesterday I was crying and for the first time he asked me why water was coming from my eyes. I told him I was very sad because this was the day Pee Pa went to heaven. He was, yet again, very confused. He said,”So he no send me nothing?” While to some parents this may seem greedy but he wasn’t trying to be. He was associating heaven as the little girl Heaven. It actually was quite cute. Just thought I would share that with you.

I think it is a perfect example of how literal and how confusing their worlds are. I am glad to be able to have a little piece of his understanding. He also told me yesterday that his doggie talks to him all the time. I can say, he does talk back and I guess it goes hand in hand with the book I got for Christmas. If you want to hear more about that just read A Gift or a Curse. Enjoy your Wacky Wonderful Wednesday and Hop along to tell me your Midweek smiles.