My Kendal

This summer has flown by and I haven't been able to accomplish much. I find that time is passing at a dizzy rate and I wish it would slow down so I could enjoy these years of discovery with Kendal. She is progressing well but there are always battles on the horizon and we continue on with our work.

We have been dealing with alot of behavior issues due to Kendal's lack of communication skills. She hits, and now pinches, to get what she wants - whether it's attention, to greet someone, to illustrate her protest of something. My hearts hurts for her that she can't express herself. She is watching all those around her talk and yet she remains silent. I am still trying to figure out God's plan for her. I worry about her future - whether she will have friends like I do even when she can't talk. I wonder if she'll fall in love one day. I wonder....I wonder.....I wonder.



We continue with therapies and with school and I can see that she gets tired of it all. Most kids don't have to deal with all the things I throw at her. I can only pray that we are doing the right things. After having another consultation with our behaviorist, we have realized that Kendal really needs more one-on-one attention to deal with the behavior effectively. Currently she is in a preschool with 18 children in her class. The teachers cannot keep an eye on Kendal the whole time understandably and alot of bad behavior is not able to be dealt with immediately. Kendal really needs a "shadow" at this time to continually correct and guide Kendal to learn proper behavior with her peers and adults. Not only that, we see that Kendal doesn't know how to play with toys appropriately and she gets frustrated easily when she struggles to accomplish tasks. A "shadow" would help initiate play with peers and act as a buffer between Kendal and others until she learns a better way to communicate.

We have requested another IEP meeting to try to get the private and school provided therapists on the same page. In addition, the school is suggesting possible assistive technology to see if Kendal responds to a communication devise - probably something like the one in the following link (http://store.mayer-johnson.com/us/gotalk-4.html). We are asking the behaviorist to join us in the IEP meeting both to support us and also suggest different behavior techniques with the teachers that might help Kendal. I pray that we are on the right track and things get better.

As many of you know, we recently moved into an apartment until we decide to buy another house or build again (we want to build again!) and we are on the third floor. Kendal has decided that she does not like the steps and refuses to go up the stairs on her own. So what does that mean? I have to carry her (all 40lbs of her) up 3 flights of stairs along with her backpack, my purse, papers, and everything else I carry on a daily basis. By the time I get upstairs, I'm exhausted, burnt out, and ready to cry. On the bright side, we did get a permanent handicap parking tag to help when we will need to use Kendal's new stroller (she gets fitted for it this week!). I know this issue will probably be short lived or that's what I keep telling myself. Other problems emerge, and older problems seem to get better.

Please continue to pray for us.

Doing Homework!

My little girl....

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!