Introducing my sister, Brooke and her daughter, Tomasyn. Tommy, as we affectionately call her, is autistic. She is friendly and funny and happy and smart, too. She is caring and considerate. She just lost a tooth.
I remember when my sister was trying to figure out what was going on with Tommy's health. Tommy couldn't communicate and wasn't sleeping and had boundless, endless energy. I was worried about my sweet optimistic sister. She was exausted and depressed. It was like I was loosing her.
When Tomasyn was diagnosed, the doctor had literally nothing to tell my sister that was helpful--they didn't know what caused autism, they don't know how or if it can be cured, they didn't have helpful hints on how to parent a child with autism, or teach the parents how to help the child learn to communicate. It was like watching my sister go through a death of a child in a way. She had to change her expectations for her daughter's life, and what her goals for her should be. Even the doctors couldn't help her to know what to expect.
Six out of every 1000 children born are autistic. That number is increasing every year--has increased over 300% in one decade. There are more kids being diagnosed with autism than kids being diagnosed with the top five childhood diseases (childhood cancer, diabetes, etc) combined. Unfortunately, there is not as much money going toward the research of autism as any of these diseases. What will happen when the number of autistic children overwhelms the school systems and there are not enough trained aids and teachers to help them? Is it a combination of genetics and vaccinations? Why are the numbers of autism so much higher in California? Why does autism seem to have so many seperate issues, like ADD and asthma? What should we expect in 50 years when all the caregivers of the autistic children are elderly--will they be able to care for themselves? Why do they say it is not genetic when it seems that so many families have more than one autistic child and others have none?
I recently recieved this email from my sister: Hello everyone! I am sending this to announce my involvment in the 2nd annual run for autism. It is a fundraiser for research of treatments for autism spectrum disorders. The run will be on October 21 (Tommy's birthday - how appropriate!) so if you would like to donate money, I would need it before then. Your donation is tax deductible. ARI's 501 (c) (3) number is 92 254 8452. (Translation - use this number if you get audited to prove you donated the money.) ANY AMOUNT helps. If you would like to contribute, please send your check to me before Oct. 21. Make the check out to Autism Research Institute.
I love you My Tommy. Happy, sweet one who always makes me laugh.
8 comments:
Certain researchers now seem to think that the cause of autism might have something to do with the male sperm. Just like women's eggs age, they are finding that men have a "shelf life" for thier sperm (even though it is continually produced throughout thier lives doesn't mean that it is fine). They are finding that older men usually produce autistic children. And man times it is associated with the Y choromosome and that is why so many more boys are autistic than girls. This doesn't make Brooke's life any easier because the fact of the matter is that finding the answer most likely will just generate even more questions.
I don't know how Brooke does it. Chris and I talk about her everyday. She is one of my personal heros. If my running would help I would run to the ends of the earth and back. For now I will just send a check!
Brittany~ this was a beautiful tribute and a mind bending reality. What a brave sister you have, you must be so proud of her.
My entire family supports the Lupus foundation because of me. My daughter walks every year and raises money. Something she does and tells none of her friends, she's very humble about it.
I can't tell you how much love is felt when your family gets behind you in support on research for a disease that is part of your life.
Bless you for posting this...you do your family proud.
love to you sweets
xxxd
What a beautiful idea that you did this. I will be running with Brooke this year. Anything for my Tommy girl. But is a run really enough, is it anything at all? Next to what Brooke and David do everyday- no way. Next to Tommys sleepless nights of eating and wiggling out teeth- no again. But it is what i can do. We can all do something- we all NEED to do something. This was really a special one.
Hi Brittany ~ I know your sister Brooke (that is how I found your blog). I haven't had the opportunity to meet Tommy in person but I have heard so much about her. Brooke is one of my favorite people I have met in my lifetime. Tommy is blessed to have such a wonderful Mom to love and care for her. I just put my check in the mail today! ~ Dini
It is overwhelming to read these comments. Although we have been through a lot with Tommy, it is she who has been the miracle to us. The hard times have been almost unbearable, but I am overwhelmed by God's love for this child. Who is she? What wonderful things does a spirit do in the previous life to earn the reward of a life that will be perfect. While the rest of us stumble and claw our way through life with some kind of dignity, this child suffers only physically sometimes now, but is unaware of her condition. She has a freedom and a joy that makes me feel closer go God. It makes me work harder. She has a golden ticket. She will look God in the face one day and be accepted into his presence. Will I be there? I want to be. She has saved me from myself. She is setting the standard higher. Thanks to love and support from family and friends, I have the energy to wake up and strive to meet that standard. I love you all. And you know Tommy does too :)
Hello, Dini, and welcome! I'm glad you stopped by. Brooke was very excited when I told her about you. don't you just love the small world of blog?
this post was so very touching and moving.
thank you for raising the awareness here. i believe every little bit helps.
bless your sister for pressing on and being so strong, raising her voice and making a difference.
Tommy looks so precious. i want to give her a big kiss on her cheek.
love to you and your sis,
boho
I am sitting here with tears in my eyes---for a sister who is so caring and full of love for her sister and neice that she got this going--for dear Brooke, Tomlinson and her family for the blessings and struggles of each day, and because in our family, we also know the blessings that come with a handicapped child. We will be so happy to make a donation. Are there partnership runs in other parts of the country? (like Portland, for instance?) It would be fun to be part of the run here if that is available. Bless you all and hugs from me to the darling Reeve girls.
Love,
Alice Bolen
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