So Lazy

I'm not sure why, but I have been so lazy about keeping track with my blog lately. It seems to really take me time to decide what I want to write about and how to word it. At this point it is probably more helpful to me than anyone else because it offers me the opportunity to vent on the latest things going on in our lives. If it proves beneficial to someone else than that is just an extra treat.

Behavior has gotten to be a much bigger problem in the last couple of weeks. It seems to go in stages where Kendal will do good for a week or two and then she gets back in her slum of hitting and throwing. It is very frustrating because I have mixed emotions on it. I first and foremost am sympathetic to what Kendal is going through. I can't image going even one day of my life without having the ability to speak to people around me. I can't imagine how frustrated, angry, and without hope she must sometimes feel because of her disconnect. I hate that she can't output what her wants and needs are in a language that is known by all those around her.

Nevertheless, it is extremely upsetting dealing with bad behavior as a result of her trying to communicate, trying to control her environment, or learning how to test all her boundaries. For the last two weeks, Kendal has been in Time Out in the school program (3 hrs long) at least 2 times each day and as high as 5 times in one day for throwing and hitting. Hitting because teachers and therapists are asking her to work and she doesn't want to. Throwing things when she isn't getting her way or doesn't like what is being asked of her. Most kids this age would be screaming, "NO NO NO!!!" Hitting and throwing would seem to be a normal reaction and I understand that but she also needs to learn there are other ways to deal with situations she may not like.

I also further understand that much more is demanded of Kendal than most of her peers. Currently, she has 8 therapy sessions a week and I know that is a busy schedule for a three year old child. I also know that I want Kendal to be aware that it is okay that she may have to work harder at some things than her friends. I was always raised to work hard and I expect the same from Kendal despite some of her obstacles. We all must work to improve ourselves and I want Kendal to have every option available to better improve her chances of living a happy and independent life.

Unfortunately insurance doesn't not cover a Behaviorist to work with us, so all appointments are out of pocket ($100/hr). We again see the Behaviorist on Thursday this week and hope she can give us additional tools to help the behaviors. Angelman Syndrome is very different in the way alot of behaviors are dealt with. Most children are trainable through certain discipline techniques and what motivates them. Kendal is much harder (in my opinion) because most disciplines (time-out, spanking, ignoring, taking away things) does not affect her. In addition, she is very hard to motivate. She doesn't have a favorite toy, she is not particular on any one thing. If you try to motivate her by giving her a special toy and then you take it away because of a bad behavior, she's perfectly fine with that. She won't get upset because she didn't care that much about the toy anyway. A visual example is when she refuses to walk. She, like most kids her age, will fall on the ground crying because they don't want to go somewhere. The parent will walk away saying, "Mommy's leaving. Bye-bye!" and then the kid will jump up and run after mommy. Totally different with Kendal. She will fall down on the ground refusing to walk and I will walk away saying "come on, mommy's going bye-bye" and she will lay there on the sidewalk happy as a lark. She won't move. She is just as content to sit there and watch the people walking around her. In the meantime, my blood pressure increases!

On a totally different note, the doctor is checking on a stroller for Kendal to see if insurance will help with the cost. She is getting bigger and going to places like the zoo, parks, and museums has gotten more difficult because she is growing out of her stroller and she does not have the endurance to walk around all day. Although she walks well, her gait is noticeable and seems to give her trouble keeping up with others and maintaining her balance well. We are hoping to get some assistance because these strollers can last several years and cost alot of money!

Also, no word back from the doctors with the Sleep Study. I was originally told they would call me in about 2 weeks. That now has transpired into 2 months. I'm sure they are making sure all their data is correct and up-to-date but I am very anxious to hear back from them and learn more about Kendal's sleep issues. Will definitely update as soon as I know something.

In the next couple of days, I promise to continue writing about my experiences at this years Angelman Syndrome Conference. Please stay tuned!