A Great Story!

Please see the following link about a girl named Sarah Walker, who has Angelman Syndrome, and was just named homecoming queen of her high school. What makes this story unique was that she was voted cause she's a sweet and fun person to be around, not because people felt sorry for her. It's a great story!

http://www.pntonline.com/articles/school-19749-sarah-touched.html

How Does She Do It?

It remains a mystery, like so many things that Kendal does. I've been trying to figure out how she got her diaper off..... I walked in this morning and she was fully clothed. She cannot get out of her clothes because they are zipped up the back, and yet her diaper was off and flung between the window and the plexiglass we put up in her room. This child can accomplish the impossible!

Speech Therapy Videos

On this particular video, Kendal didn't do alot of vocalization. In the future I will try to get additional videos to better show her progress.

On this following video (beginning around 2 minutes, 15 seconds) you can see just how smart Kendal is!!!! I just don't see how the doctors say she is mentally retarded. She knows exactly what is going on!

2010 - Here We Come!

Our Family - Christmas 2009

Kendal loves balls!

Me and Tara


Me and Grandma (Can you believe she's 88?)


Thought this picture was so cute - Tara, Kendal, & Lucy


Me and dad

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2009 is gone and with it I am both sad and full of anticipation about what is come in 2010. Kendal has so much going on right now. She is flourishing in so many ways and more than what the doctors prepared us for - is there any doubt of how great our God is?

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Christmas was great since we got to see so much of our family - just wish we could see them more often. My good friend Shirley gave birth to Max on Christmas morning. It doesn't get any better than that! As I get older older I am so much more thankful for what we have. Family and friends mean the world to me and I know that life is good.

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I ended the year on a sour note mentally. I try not to get down in the dumps especially when I realize just how blessed we are. But occasionally I do let the blues creep into my mind and temporarily take over. I know this is "normal" but I still get frustrated that I freak out thinking about what is and what is to come. All the unknowns. As a Christian, I am so bothered that I continue to worry when I know that God is in control and Kendal is his child. I don't know if all the questions are a lack of faith on my part or if it is Satan trying to continually confuse me with lies and deceit. Whatever the reason, 2010 has not begun in a good way.

It probably started out when I took Kendal to the doctor in December and it was actually the first time I had been out with Kendal where her disability was very apparent. In the waiting room of the doctors office, there were several toys in the corner of the room. There were children playing with them as it was a busy day with the flu season in full force. Kendal was excited and began hollering and pointing to the toys. I continued to tell her to go play and that I would be watching, but for whatever reason she just kept watching the other children and yelling. It was the kind of yell you would hear from a mentally retarded child in an institution. She was so loud and it got uncomfortable because the children stopped playing because they weren't sure what to do. It grew more awkward as I received several looks from other parents as I got Kendal to hold her in my lap. I even got a comment from another mother, "Oh, she's so beautiful!" I broke down. I mean totally lost it there in the waiting room. Tears falling to the floor, flipped out. Why did it catch me so off guard?

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It happened again we when we received the sweetest gift from Kendal's daycare. They had video taped different activities that the class had been involved in throughout the month of December. I again began tearing up seeing how Kendal was not able to name the states, recite the Pledge of Allegiance, recite the books of the Bible, etc. I know that Kendal can't do what other children her age are doing but it was somehow harder to see it on the TV. That Kendal - my child - was the one in the classroom that was different. I guess knowing something in your head and actually "getting" it are two different things.

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To top it off, Kendal was more than a handful with all the additional days off from school and daycare. They continually have her stimulated by activities so when she is home she is completely bored. I'm not sure if other "angels" are like this, but Kendal has very little interest in toys. She is much more interested in you being her toy! She is constantly craving attention so if I am doing the dishes and not watching her, she will do something to get my attention. What does that usually involve?? Ripping pages out of books, throwing things at me, hitting me, etc. I try to remember that she doesn't have the option of saying, "Hey mom - over here!" I guess she has found out very quickly how to get my attention and she is very good at it I might add!

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To top it off, she went about 10 days of waking up every night and being up for hours on end. Anyone that knows an angel probably has the same issues. Kendal is usually pretty good with sleep but she does go through phases where her insomnia keeps her up most of the night. James has been wonderful helping me get additional sleep from being up with her. Because Kendal is Houdini reincarnated, we cut out the feet in her PJ's, put them on her backwards, sewed up the neck so it can't be stretched out, and she is now still dressed in the morning. She has gotten out of almost everything and so far so good with her new nighttime get-up.

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I guess I need to realize that we will always have good days and bad days. We just have to take it one day at a time. I must remember this isn't all easy for Kendal either. I know she gets frustrated and I know I work her tale off.

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2010 will be great. I will try my hardest to get back into updating this more often. A video should follow in the next day or two of Kendal in speech therapy. Thanks for all the support and feedback we have gotten on this blog. If anything, I hope it helps another family who find themselves traveling down the same road.

November, really????

I don't know where the time has gone. Days seem to keep passing by without the slightest hint of slowing down. This has been a very busy summer and fall for us. Kendal is doing great right now. I had talked about Kendal's behavior issues that were becoming major issues for us, but she has recently seemed to have been doing better. Kids are not automatically protecting themselves when Kendal walks up, and that is always a good thing! The school system has been using a two button communication device and it apparently is helping at school. The teacher sent a note home today that someone had brought in an "Easy Button" from Staples, and Kendal is willingly working hard so she can play with it. That made me crack up!

We have also been trying to work on Estate Planning for Kendal and it is such a large task to undergo. Everything from putting fact books together of Kendal's medical doctors, her wants, and likes and dislikes to hiring an attorney to put everything together - it's a big job. We subscribed to Protected Tomorrows (http://www.protectedtomorrows.com/) as it provides a step-by-stop process to help us with these issues. If only I could hire someone to do it all for me! Just finding the time to get these things handled becomes a very hard issue.

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Halloween was so fun this year! Kendal had a princess outfit that she had received as a hand-me-down from her cousins, but it was a little too tight and the fabric was irritating to Kendal's skin. We purchased Kendal a Cheerleading outfit (mainly because it was one of the few things that didn't require a hat or something else on her head, which Kendal hates). She very quickly understood the concept of walking up to doors and getting candy. So beware ---if Kendal walks up to your door, she is probably expecting candy and she can throw a fit with the best of them.

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Hope everyone enjoys the pictures. She is becoming such a big girl!

Please keep the faith with me on these posts - I will try to do better!

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!