Kara's 6th Birthday!

Kara turned six-years old on September 12th, 2010. We threw a birthday party Kara style. We went to the park and ate lots of desserts. Although, the desserts might have been more for the adults at the party because Kara was preoccupied with the playground. When it came time to blow out her candles she was ready as ever. When she sat down she grabbed a huge hunk of cake. Although she was not able to blow out her candles, she did spit her food out and give it a try. Her brother Kaleb was there to help blow out the candles.

Kara's 6th Birthday

Documentary about Chad

Great little film to portray how a 20 year old Autistic boys lives with Auism.

A young film maker Jenks takes on the task of spending time with an Autistic boy named Chad. He goes to school with him to see how Chad spends his days. He takes him to New York City which Jenks soon finds out that it is to much stimulation for Chad. .

http://www.mtv.com/videos/world-of-jenks-ep-2-cant-make-me-be/1647734/playlist.jhtml

Extra Clips
http://www.mtv.com/videos/misc/572630/guy-talk.jhtml#id=1647781
http://www.mtv.com/videos/misc/572328/jenks-sleeps-in-school.jhtml#id=1647781
http://www.mtv.com/videos/misc/572284/morning-person.jhtml#id=1647781
http://www.mtv.com/videos/misc/572280/catching-up-with-chad.jhtml#id=1647781
http://www.mtv.com/videos/misc/572329/love-triangle.jhtml#id=1647781
http://www.mtv.com/videos/misc/572277/setting-up-camera-in-car.jhtml#id=1647781

Kara loves to Dance

Kara loves to dance. We can put on any song and she will come running from the other room to dance. She gets excited to also dance with her brother Kaleb. He is also featured on this video. .

Great Story!

http://abcnews.go.com/WN/Broadcast/student-autism-class-salutatorian-delivers-high-school-graduation/story?id=10933858

Austism Walk/Run Lehi, UT

The great thing about sister's is we know everything about each other. Tina doesn't know I logged onto her blog to do a post. This is Cherie. Last Saturday my Mom, Dad, Brookie and myself had the opportunity to participate in the first Autism 1 mile walk and 5k run in Lehi, Utah. We pinned pictures of Kara on our shirts for the race.
Saturday morning was a very windy, cold morning. The sun was out but oh boy it was cold. My parents and Brookie did the 1 mile walk. My parents said Brookie did great on her first "race", Brookie walked the whole 1 mile. :)
I started out on my run confident and happy. The wind was blowing right up on me as I ran, the wind was a blowin'! While running I kept thinking of my beautiful niece Kara and how hard she has to work every day to communicate and be heard. I continued to think of sweet Tina and Dan, they go through so much on a daily, hourly basis with Kara. These thoughts kept me running, I didn't stop. I ran the whole 3 miles, I couldn't stop running....Kara does not get to stop or give up. Neither does Tina and Dan. I haven't run that far since 2008 when we did a Triathleon for Kara at the Jordanelle in Utah.
This race was an amazing time. I was uplifted by the cause and motivated even more to help others become aware and understand Autism.
I want to tell Tina and Dan how much I love them! I appreciate their strength, wisdom, ability to stand back up when things go wrong, their love for Kara and Kaleb. I love, love, love, love my Kara! Kara is a beautiful, BEAUTIFUL girl. I love her blue, blue eyes. And Kara's sweet brother Kaleb is so good to her and takes care of her. Kara is so blessed and lucky to be with her family. They love her dearly and it shows.
Thanks Tina for letting us know about this fundraiser! I know Mom and Dad also enjoyed the walk, it was an emotionally, uplifting time for them too.
Love you!!!!!!!
Cherie

My husband is a student at Harvard and passed this article along. It is about Vaccinations.

https://sitn.hms.harvard.edu/sitnflash/html_archives/sitnflash-201003b.html

The Special Mother

I saw this and immediately thought of you :)
Germaine

My friend sent this to me a couple of weeks ago! It was sweet and it made me cry.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

Playing at the park.

One of those weeks'!!
No school for the kids this week. Cambridge had February vacation week. The first couple of days were hard. I am not use to having my kids at home during the day. It always takes me a couple of days to adjust. On Monday I felt really tired and depressed. I think it is because I was mentally drained from taking care of Kara. She asks for food all the time. She needs a lot of oral stimulation. She thinks the best way to get that is by eating all the time. I have to cut her off at certain point because she would eat all day if I let her. It gets really tiring when she is always signing for food and I am continuously going into the kitchen to get it for her.
After Monday we seemed to get into the grove of things. Kara has recently been taught to play by herself. She has been doing pretty well with it. She will go in and sit in her bedroom and play for 10-30mins. That is really good for her. It gives me a break and it teaches her to be and play by herself. I wouldn't have made it through this week if it weren't for Emilie. She is our respite-therapist. She came everyday to relieve me for a few hours. Emilie, I love you!!
Kaleb has been having a hard time lately with Kara not being able to talk. He woke up one morning and said "mom, Kara talks to me at night when we go to bed,” I said "really, what does she say to you?" He said, "she asks me if I want to play baseball." I said "WOW." He then continued to tell me that they play in their room for an hour and then go to bed. It was the cutest thing I had ever heard him say. I didn't really think anything of it until the next morning he said the exact same thing to me. Later in the day he was lying on my bedroom floor and started to cry. I said, "Kaleb what is wrong." He said, "I wish Kara could talk." It broke my heart into a million pieces. I hadn't really thought about how Kara's autism affects Kaleb. He said he wishes he could talk and play with her. I told him that it is hard for her and us. We don't know why she doesn't talk, but I know that Kara loves him very much.
I looked over at Dan and said, "let's play Kara style." I told Kaleb to get up and we would show him how Kara can play, we just have to play a little differently. Dan then started jumping and throwing the kids on our bed. Kara also really enjoys it when you run up to her and scare her. She gets scared and grabs whatever is in reach of her. Dan started to run from one room to the other and scare both of them. Kaleb was lying on the bed and they both grabbed for each other. They played jumping, and the scaring game for a while. After they were done Kaleb had realized that he can play with Kara he just has to do it her style. I have put a video on here of Kara and Kaleb playing with his monster truck. It was a present from grandpa Randy. It was great to see Kaleb take what Dan and I had showed him and made his own ideas on how to play with Kara.

How to Communicate with an Autistic child.

I have had a request from a friend to talk about how to interact with Autistic children. From my personal experience the best thing first would be to ask the parent or caregiver how severe the child is (of course if you know that the child is autistic or disabled). That way you will get a better idea about how to talk or interact with the child, and in most cases you will be surprised how much the mom will love talking to you about it. If you don't have an opportunity to ask a parent or caregiver. In my experience, I would suggest not trying to hug or touch them. Most autistic kids have sensory issues and they usually don't like to be touched. Some autistic kids won't understand most things you say to them. You usually can't talk to them like you would talk to a typical kid. Although some will understand what you are asking or saying to them, again that is when the spectrum part comes in. I think most people can pick up on if a child is not responding to them. For example, if you walked up to Kara and asked her, how is your day, she will not respond and sometimes not even acknowledge you are there. It is tricky to interact with them, but in the end I would say whatever you do don't be afraid of them, if you don't know what to do just talk or interact with them how you normally would and your good senses will kick in on how to interact with them.

There is a BIG spectrum and lots of kids fall from serve, and mild. For Kara she is severe. She does not talk, but she does know sign language. Some kids communicate through a system called PECS. Which stands for Picture Exchange Communication System. (read more at this link)

http://en.wikipedia.org/wiki/Picture_Exchange_Communication_System

I think this paragraph is very important. I have underlined an important part of this definition. The however caught my eye. Which means it is not a cure, it is not proven that it will help kids with autism communicate, but it doesn't hurt to try.

Effectiveness

There is preliminary evidence that PECS is easily learned by most students, with its primary benefit being a means for communication by children and adults who have little or no speech due to autism or other developmental disabilities. However, there is very limited data on the effectiveness of PECS on both challenging and social-communicative behaviors, and inconsistent and unclear data on whether PECS affects speech development.

I noticed that PECS was not working for Kara after two months. You have to stay in tuned with your child and what they are and are not responding too. So many times we rely on the therapist, or the people that work with our children to have all the answers and to be able to tell us, but the truth is they don't. I realized, I am my child's best advocate.

A lot of people use this way to communicate with Autistic kids. We tried this communication when Kara was two years old. She did not seem to understand the pictures. We still tried it with her for a year, but in the mean time we mainly did sign language with her. Kara responded better to sign language. She is a great signer. She knows about forty signs, but it also took her four years to teach her those forty signs.

http://www.sltrib.com/ci_14303090?IADID=Search-www.sltrib.com-www.sltrib.com

Last week Kara was very slow. She has a cold. It is not a horrible cold, but she does have a runny nose, and a little cough. I feel like when she is sick she acts weird. She just has weird behaviors. Sometimes when I watch her it is like she hallucinates. She just stares off in space forever, and she gets stuck in these weird patterns. For example, she will walk from one couch to the other waving her hands and making some weird uuuuuuggg noise, but she does it for like 30 minutes non-stop. It is like an OCD behavior. I know when I have a head cold it is not fun, but I feel like it affects her differently. I could be totally wrong.

She was very loving last week. At one point she grabbed my face and pulled it towards hers and gave me a kiss.

She is still getting out of her bed at night and in the morning. It is funny because when she gets out at night she tries to run down the hall away from us, but I grab her and tell her it is bedtime. She does surprisingly well with getting back in bed and not crying. She will only attempt to get out 2 or 3 times and then after that she stays in her bed and falls asleep. Kara getting out of her bed in the morning is not as bad as I thought it would be. She doesn't get out until 8am, and it is good for her to realize she can get out and get herself out of bed. Of course it is no fun when I want to sleep past 8am, but I think it is a great milestone for her.

This weekend we had the luxury of the therapists and babysitters back in our home. I feel very blessed and lucky that we have that service for her. My sister Cherie sent me this article; it is from the Salt lake Tribune. It saddens me to read and hear things like this. I am glad I live in a democratic state in times like this. Even though taxes are higher here, there are so many more services for Kara. Please take a moment to read the article.

Kara Ann Hyde was born on September 12, 2004. She was seven pounds and two ounces. She was born at 11:10am on a sunny Sunday morning. She was a swollen beautiful baby! I took her home 2 days later. She was an angel. The first night I had her home she slept for fifteen hours. I put her to bed at 8pm and she didn't wake up until 11am the next morning. I woke up that morning and asked my mom if Kara was awake yet. She said "she hasn't heard a peep out of her." I thought that was really strange. Kara didn't want to wake up and eat during the night. I went into her room and looked in her crib. She was sleeping soundly, I woke her up and fed her. At the time I didn't think anything of it.

Kara is now five years old. For our family it has been a long five years. I personally have had my ups and downs, so has Kara. Kara was diagnosed with severe Autism at the age of two. When she was diagnosed she hadn't walked yet. Not only did we or do we have the challenge of her developmental delays, she also has physical delays. She was slow physically at rolling over, sitting up, crawling, and walking. She was way behind in those areas. She did eventually sit up, crawl and walk. She walks on her tippy toes, and has a week limp to her walk, but she has grown tremendously over the years.

I want you to follow us on her journey. I want to help you better understand Kara, and Autism.