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!

AS News

It's always great to see local news reporting on Angelman Syndrome. The more awareness we spread, the more help we can get to individuals with AS. Please see the link below from a local TV Station.

http://www.wkrn.com/Global/story.asp?S=10817597

Swimming with Nana

I haven't posted any videos in forever, so here's one from our recent vacation. Nana was great to go swimming with Kendal while I got the chance to lay out in the sun with no worries.

Overview of the Conference (Part 1)

For anyone that wanted to know more about what things we learned or experienced at the Angelman Syndrome Conference (thinking of you Paula!), I will be providing my feelings and insights to the highlights of some of the sessions we attended.

First off, it was really neat to see how we families seemed to gravitate to one another. On one of first days there, we went down to the pool and immediately started talking to another family who had a son with AS. Before we knew it we were surrounded by several families all eager to ask one another questions about sleep, therapies, and anything else that came to mind. I think it was definitely the first place I have been where I knew my concerns or feelings wouldn't be brushed off so quickly. For example, a concern about throwing objects so forcefully was not immediately dismissed by someone that doesn't know about AS saying, "Oh, she'll grow out of it!" Instead it was met with different ideas to avoid those issues by other parents that have had the same problems. One parent, told me that her 16 year old still would throw objects continuously which is why her child still drank from a sippy cup.

We attended the "First Timer's Session" and it was a great beginning session for parents that had never attended the conference before. Most parents there were fairly young, like me and James, seeking to learn anything and everything about AS. One of the first exercises we did was to write down one emotion that we were feeling at that particular moment down on a post it note. When we wrote down our word we went and stuck it to the wall. My word was "anxious". At the end of the session, we took the time to walk down the wall to read other peoples emotions. I counted three other "anxious" on the wall. I thought it was a great example to show that even though we sometimes feel alone, there are people out there that are walking in our shoes and know the same feelings or frustrations that we are living through. The main point of the class was to familiarize new participates of the different conference sessions and show us the importance of networking with other families. It started out the conference on a very high note.

James attended a "Just for Dad's" session and I attended a "Just for Mom's" session. James seemed to get a lot of out the session by talking in small groups with other fathers dealing with everything from marital issues to behavioral issues in AS. I enjoyed my session because we just got a chance to talk in an open forum by asking other moms questions. The speakers kept telling us we had the best resources right there - not necessarily the doctors, but all the moms!

Got to close on this now, but my next post will detail out Dr. Calculator's Session on Best Communication Practices, Dr. Oliver's Session on Understanding and Changing Difficult Behaviors, and Dr. Weeber's Session on the Most Recent Research Advancements.

Stay Tuned!

Angelman Syndrome Conference

This year we were able to attend the Angelman Syndrome Conference in Orlando, FL. Much thanks to my parents who were able to travel with us at their own expense. We stayed at the Hilton Resort at Walt Disney World because this was the hotel where the conference was held. We arrived on Monday morning (7-27). It was Kendal's first flight and she did really well. Tuesday we had the opportunity to visit Magic Kingdom with Kendal. She really seemed to enjoy it. She always seemed to have a curious look at all that was going on around her.

Staying in a small hotel room with an extremely hyperactive child is not a good thing, we have learned. We tried to stay out of our room as much as possible because she totally wrecked havoc on everything. From pulling out the mini fridge from the cabinet, to turning the radio alarm on full blast, Kendal was into everything. Me and James received little rest during the week but that is to be expected with Kendal's sleep issues and the fact that she was in a new place. When we would come down for breakfast we would look around to all the other parents who were up most of the night with their angels. No explanations were needed.

Although we attended many classes that were offered as part of the conference; such as: Just for Moms/Just for Dads, Communication Practices, Latest Research Findings, Sleep Issues, Assisted Technology, Benefit Planning, and Behavior Issues - we still found the most important thing to be meeting so many other families/angels that have or are currently walking in our shoes. We of course felt extremely blessed when we saw the magnitude of other children's disabilities compared to Kendal, but we still know that we have our own battles to face. We met so many wonderful people from all over the country and even in Brazil. I am eagerly awaiting some emails from other families and hope to stay in contact with them through the years. Most importantly, it was nice to see people be where we are now and continue to encourage us that things will get better in many ways and our obstacles will change as Kendal grows but no matter what we will be OK.

I really hope we can go to more of these conferences that are held every other year. I know that I have made some lasting friendships and I am so grateful for being able to attend.

We're Still Alive & Kicking

To anyone who may check this blog occasionally, I apologize for taking so long since my last post. Things have been crazier than normal in the last month, but we are all doing great and have been blessed beyond words. First, we finally sold our house. It was on the market for almost a year and we received our first offer which was for the full asking price (pretty rare in this market). We had to be out in 3 weeks so needless to say, we had to pack up the house and find somewhere to move very quickly.

My last post mentioned Kendal's upcoming overnight Sleep Study. I had taken Kendal to Vanderbilt at about 12:00 on a Wednesday and she saw several doctors that are associated with the Research Study. Before, the sleep study began, me and Kendal went to dinner with my aunt Kristy to try to unwind after such a long day. We had a great time visiting her and dreaded going back to start the study. After getting Kendal all wired up, the study began around 9:00pm. It was very upsetting for Kendal to be wrapped up like a mummy and have all these wires hanging off of her. It was really hard to deal with it by myself because I felt helpless. She did however manage to get through the night and we were both happy it was over.

So much has happened in the last several weeks that I hope to make several posts to feel you all in. However, we are leaving in the morning to go to Orlando. We will be participating in the Angelman Syndrome Biannual Conference this year. My parents will also be going with us to help with Kendal while me and James do some sessions. We are so blessed to have this opportunity and so thankful that God has continued to show us his love and grace.

A Good Reminder

Kendal has been doing so well lately, I kept asking myself why I was going to the trouble of completing a 30-day sleep study that will begin tomorrow evening. Tonight, I have been given a good reminder that although Kendal has been doing much better, she still sometimes struggles with her sleep. She has been up for the last 2 hours. She isn't crying, but I can hear her rattling around and occasionally squealing. I have already been in to change her diaper just to make sure she wasn't playing in it (like last night!) and she is her usual happy excited self at 1:00 in the morning.

Tuesday me and Kendal went to Vanderbilt to visit the Geneticist. I think I shocked him because I was in a much better place than I was the last time we saw him. Life has a way of working things out and since we have accepted some of Kendal's limitations and are striving to make things better for her, I am much happier about where we are at. Of course Kendal was acting like a ham for him and he was really happy about her starting the public school program and her therapies.

We then briefly met with a dietitian to discuss Kendal's food intake. Kendal has always been an extremely aggressive eater, much like her mother and father. She is very solid and is in the 93rd percentile for her weight. The dietitian looked at our food log and was good with the variety of things that Kendal was eating, but that she was just eating too much. I totally agree. Kendal will eat everything we put in front of her and we have a hard time deciding how much is enough. We will probably start measuring some of her food just to help us get a visual of how much she should be eating at mealtime. We also switched to skim milk and will make some different choices on her snacks.

We then did some developmental testing. Kendal has had these same tests now a handful of times. Because she had already been there a couple of hours to see the doctor, Kendal got very clingy and did not perform her best. I don't blame her. I was tired, hungry, and aggravated and I'm sure she was too. We finished up at 1:00 and headed to the daycare and me back to work.

This week seems to have been more challenging than most and James has been great to step up to the plate (his favorite expression - no actually he hates it when I say that). He has taken care of dinnertime, bathtime, and getting Kendal ready for bed all this week. Thank you so much James.

Tomorrow will be interesting. We go to Vanderbilt at 1:00 and will stay until 9:00 Friday morning. Please pray that me and Kendal keep our wits about us. I'm sure it will be a very long day.

It's quiet. I think she has finally fallen back a sleep....

Ok Seriously, is it June already?

Ahhhh...summer is here and the craziness continues! We are again changing our schedules due to Kendal's therapies and changes in the school year. Although Kendal was only in the school program for about 5 weeks, she was finally getting comfortable going and was having fun with her new friends. Of course, the school year came to a screeching halt on May 29th and we had an end-of-the-year party for her class. Both me and James were able to be there and meet some of the other parents and sit in during circle time before the kids got to play in the sprinkler outside and jump in the bouncy cage. It was really fun and Kendal had a ball!

Circle Time

Kendal with AnnMarie (her teacher) running through the sprinkler

My Cutie-Pie

Next week will be a little crazy for us. Kendal sees the Geneticist (Marshall Summar) again for her 6-month follow-up appointment. I really like this doctor and he really seemed to understand us and was concerned about our family unit as much as Kendal's diagnosis. Our last visit with him lasted about 2 hours which is pretty unheard of in this day and age. Then on Thursday we go back to Vanderbilt to try to get some things handled on the research study (http://kc.vanderbilt.edu/site/services/studyfinder/show.aspx?id=136) that Kendal is in. We will go in about 3:00 in the afternoon on Thursday and will see the geneticist again, the neurologist, and a sleep specialist. We will stay overnight for the sleep study (which I am totally dreading) and then we should finish up sometime Friday mid-morning. Needless to say, I will be taking off work on Friday because I don't suppose that me or Kendal will get any sleep that night.

The following week (June 22-26) we will get in our new schedule. Resource class on Wednesdays and Fridays from 9-10. Speech Therapy on Wednesday from 8:30-9. Speech Therapy on Thursday from 7:30-8:30. This will go on for a little over a month and then school will start back up on August 3rd.

Speaking of school, I have always been prepared to fight for any services that I felt Kendal might need through the school system. I am surprised however because I have been extremely pleased with what is being offered to her. The last week of school, we had another IEP meeting to discuss the results of her Occupational and Physical Therapy evaluations. To my surprise, Kendal was approved for the 2009-2010 school year to receive: 2-Speech Therapy sessions per week, 2-Occupational Therapy sessions per week, and 1-Physical Therapy session per week, in addition to the 4-days a week of Resource Class. Of course it does not hurt to know people within the school system and we have been blessed to have several people involved in decision making that are close friends of the family.

Despite my constant worry, God always always provides and takes care of us. I don't know how I could ever doubt him.

Couldn't be prouder!

Please view the following link to read about my big sister. She just moved to a new city (only been there 1 week to be exact) because of her husband's recent job transfer. She not only has gotten a new job, but has already been interviewed by her local TV station and has had two write-ups in the local newspaper.

She is extremely well-accomplished and I know she will do great things in her new job.

Congratulations Katie!!!

http://www.jacksonsun.com/apps/pbcs.dll/article?AID=2009906070314
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Memorial Day Weekend 2009

The pictures below are from Memorial Day Weekend this year. Me and Kendal spent three nights and four days with my parents and sister and brother-in-law at Center Hill Lake. We had a such a great time. The only thing that was missing was James. He had to work every day that we were there but we look forward to having him there next year.

Yes, we're still here!!!

Since I started this blog, I don't think I have ever gone this long without doing a post. We are all doing well but May was complete chaos with all the stuff we had going on. Of course, we had the very successful Angelman Syndrome Walk-A-Thon on May 16th. It turned out great because despite the ugly start we had almost 40 people there to support our team. We were surrounded by people that care and love us and it was absolutely wonderful to also get over $2,700 in donations. Thanks everyone for making this such a successful year!!!

Kendal loved walking!

Team Kendal!!!

Go Kendal!


Nana, Kerrie, & Grandpa

Walk-A-Thon or should it be called a "Talk-A-Thon"

Saturday's Angelman Syndrome Walk-A-Thon was AMAZING. We had about 35 people show up to support Kendal. The day started out so ugly, and yet all these people got out of their beds and came down in their "Team Kendal" t-shirts. I was so proud to be surrounded by people that love us - we have truly been blessed to have amazing family and friends. In addition, we had many people that donated to the ASF on behalf of Kendal and we thank you so very much!!!

As usual, I did more talking than anything. I'm not sure why it is a Walk-A-Thon. I think if I were in charge, I would just have some comfortable seating to sit around and socialize. Something I LOVE to do!

We met several people that I have talked to or seen their blogs on their children. I spotted beautiful Carmyn (http://lovebeingamom-paula.blogspot.com/) and was so happy to met Paula, her mother. Paula, please let me know if you end up moving this way - it would be great to get together!!

I was able to trade stories and suggestions to some parents about things that work for Kendal. Again, how blessed are we to have a network of people right here in our area?

Pictures will follow of this great event. Again, thank you to everyone that was able to donate this year!!

Happy Belated Mothers Day!

I'm sorry this is late, but I did want to send out a special post to all the wonderful mothers that are doing such an amazing job raising our kids in this sometimes crazy and bizarre world we live in today. Please keep up the fight to raise moral, caring, and courageous children. They are the future and don't forget they will be taking care of us while we're in the nursing homes. That is truly a scary thought!

With Kendal being my only child, I am used to her silence. Used to the fact that I do not know what "I love you, mom" sounds like from her mouth. And even if I never actually hear her speak it, I know that she loves and appreciates me by telling me in other ways. Sometimes though we just want to hear it.

No matter how discouraged, frustrated, or lost I can sometimes feel when I am trying to do the best for my child, I have to remind myself that God placed this special child with me because he knew I was the perfect mother for her. What an amazing honor!


These are the beautiful flowers my sister sent to me! Thank you Katie, Mike, Marilyn, & Olivia.


This is Kendal running around with my card, not wanting to give it to me.

This is one of my favorite sayings by one of my favorite artists. Please check out her website. I have several of her prints/canvases in Kendal's room.

https://www.maggielindleydesigns.com/index.html

"thank you, mom, for loving me before you ever knew me. thank you for cutting the crusts off my sandwich and driving me everywhere I needed to go. thank you for your precious hands that heal every ache and pain. thank you for being my wisest counsel and my best friend. and thank you for being my heart’s first home. I love you, mom."

Now I Feel Old....

Last weekend my good friend Shirley came over for a visit while her eldest daughter Stacy attended her School Prom close to our house. I was shocked to see Stacy at the door looking absolutely beautiful and looking so grown-up. I was just wondering what happened to the little girl I met 10 years ago. Where does the time go???

Worth Repeating

I'm sure I've posted this before but it is worth repeating. This article is about a researcher that has "cured" Angelman Syndrome in mice, by regulating a specific enzyme in the brain. Wouldn't this be wonderful if they could do this for our children down the road.

http://www.cureangelman.org/news/LongShot.html

To think maybe one day Kendal could talk...that I could know what's going through her head - what an amazing day that would be.