Monday, April 5, 2010

April is Autism Awareness Month!

All of my wonderful blog readers know that I blog about a disease near and dear to my heart, Type 1 Diabetes. However, that isn't the only one that means something to me. In my family, my mom and dad have 5 kids. My older sister Krystal (28), then me (26), Malory (24), Hailey (18), Gabe (15). After 4 (I might add super, wonderful) daughters, my folks finally had a boy. So I urge you to keep reading and follow his story. Welcome to our other Holland...

~Gabe (2 months), Hailey (2 years)
Initially, Gabe developed absolutely normal. He was saying words, "mamma, dadda, cow, ball, bampa (grandpa)." He was my little buddy. I was a tomboy and enjoyed finally having a brother to pal around the farm with. But he started "losing" his vocabulary around 18 months old. He stopped making eye contact. He changed. I was 14 and I remember his meltdowns. We stopped being able to go places as a family because crowds and noises were too much for Gabe. It was hard on all of us. I remember watching the other kids his age and wishing Gabe could be like them. When he was 2 he was dx with autism. He had no vocabulary. We couldn't communicate with him. He lived in his own little bubble and we didn't know how to penetrate it. It seemed like he didn't even know his family existed. The doctors told my mom Gabe would never recognize her as his mother. He wouldn't know how to love. They actually gave her a pretty grim outlook on life with a child who has autism.

But my mom didn't take that as the end all. She started researching. She started reading. She joined committees. She learned all she could. We implemented several things early on after his dx. There were 3 things specifically that really seemed to help us get into Gabe's world. After integrating them, we started seeing progress. He began talking. He began playing...actually playing with other kids and toys. Using his imagination! He went to school. He learned.

~Gabe as a vampire for Halloween--I did the fancy paint job. :-)
~In school he has always been in mainstream classroom with the help of an aid through elementary school. In middle school his aid came as needed. As he grew, eventually the need for an aid diminished. Now, in high school, he doesn't need an aid at all.
~Gabe around 5 years old.
~Gabe had no fear of anything. He didn't understand danger. Or cold for that matter. He got outside in the winter once in only his diaper. The fact that he was freezing didn't register to him. It was like he couldn't feel it. This is a picture of Gabe after he scaled a tree to look in a nest. I had to go after him. Scary, eh?
~Gabe with his sisters...ummm don't mind my grouchy face. At 17 I thought I was too cool to get pictures taken with my family. Nevertheless, Gabe always had the support and love he needed. We all learned about autism and how we could help Gabe.
~Hailey was and still is one of his biggest advocates at school. They are only 2 years apart and she is great. This picture was not too long after his dx.
~This is me with Gabe at my wedding 7 years ago. He is such a bright spot in our life--notice his smile? Early on we couldn't get him to smile for pictures. I really believe it took all of us to help Gabe get where he is today. Which is where you ask?
~A 6'5" sophomore in high school. He has friends. And hobbies. Likes and dislikes. He has crushes on girls. He goes on dates. He has full communication skills.

~This is my mom, Hailey, and Gabe a couple of weeks ago.
-Gabe has many special talents and gifts that make Gabe uniquely Gabe. He loves his family. He loves to lift weights. He does 500 sit-ups every night--no joke! He has an awesome 6 pack! He is an avid outdoorsman and very independent and self sufficient. He is fully capable of living on his own after high school. Holding a job and having a family.
-Through the years people have asked us if we would change Gabe if we could. I've always been torn with this answer. He has gone through a lot growing up with Autism. Lots of tears. Lots of bullies. People who don't understand how a person with autism's brain works. People who don't understand nor do they care to TRY and understand. He has dealt with rash judgments and rude comments. But all of these things have worked together to make Gabe who he is today. Does he still have characteristics of autism? Yes, some. But he is no longer the introverted little boy he was at dx. He has grown into a great young man with so much potential.
I hope this month proves to be a very effective campaign to teach more people about the special people who live with autism. I hope they learn how to interact and help them. I hope they learn to love them and see them as a person and not define them by their disability. I hope this month helps more people focus on the ABILITY part of disABILITY.

In addition to my family, I have several friends, wonderful mothers, who are parenting some very special kids who have autism. I love them all and am so very proud of them. Cheryl, Amanda, Shelia, and Mom keep up the great work ladies. You are wonderful advocates. (I hope I didn't forget someone!)

For more information about autism and to learn the warning signs--because early intervention is key--please visit http://www.autismspeaks.org/

27 comments:

The White House said...

Thanks for posting such a wonderful post. I can completly relate, and find hope that my boy will be able to main streamed when he joins school. I don't think I ever told you AJ has been dx w/PDD-NOS. The short version is that he has autistic characteristics but does not entirely match a autistic dx. There is more hope for him to grow out of his problems than if he had a full autistic dx. Somedays can be hard, though I would never trade him for the world. Some of his quirks make me love him more, and using your story of Holland, his quirks are the beautiful tulips I would never have seen in Italy!

Cheryl and Scott said...

Shamae, you are amazing. Thanks for making me cry....again!! Seriously thank you so much for sharing Gabe's story. It gives me so much hope for Ronan and the future.

Sheila said...

Thank you Shamae!!
This post has given me so much HOPE!! I pray that my Brandon has a story like Gabe's someday! Love you!

Anonymous said...

Shamae,

You did a wonderful job of introducing Gabe and the challenges he has faced and still faces to your blog.
I hope this gives parents of young children, just starting out on this journey or those well into it, some much needed hope and encouragement.
He is such a wonderful part of our family!
I love you!
Mom

Meri said...

Thank you for sharing Gabe's story Shamae. Hope is a very powerful thing. ((Hugs)) to you and your family. :)

Misty said...

Shamae,

What a wonderfully written story about the love of a family! I could feel how much you (and I'm sure the other members of your family) have loved and supported Gabe. And it appears to have made a difference...sounds like he is a very special person!

Penny said...

Thank you for the story of Gabe, Shamae, truly wonderful. My oldest daughter who is 13 has autism. She has been a gift all the days of her life. I thought my hands were full when my youngest was diagnosed with Type 1. They are just full-er than ever before. Each child brings something special and unique to my life. Autism brings challenges and it brings gifts. Thanks for sharing your gift of Gabe.

Penny said...

Thank you for the story of Gabe, Shamae, truly wonderful. My oldest daughter who is 13 has autism. She has been a gift all the days of her life. I thought my hands were full when my youngest was diagnosed with Type 1. They are just full-er than ever before. Each child brings something special and unique to my life. Autism brings challenges and it brings gifts. Thanks for sharing your gift of Gabe.

Teresa Whitehead said...

I have always admired first your mom and now you for never giving up or just "accepting" autism / diabetes. You both researched your hearts out to help your children. I can only hope I'd have a similar positive attitude if I were in your shoes.

And I can't believe how much Gabe & Hailey have grown up! Gabe is so handsome, and Hailey is beautiful. It was good to see pictures.

Hallie said...

I LOVE this! I love that you shared it! I love everything your family has done for Gabe! Wow!!! What an inspiration! I've worked with autistic and "spectrumy" kids for years and I love hearing success stories- love hearing how others get and see how special and unique these children are- so smart, so capable.... Great post, Shamae! Keep us posted on your awesome family!!!

Springer Family said...

Gabe has grown into a very handsome young man! I remember your mom doing everything she could to learn about autism! She and the rest of your family have made such a difference in his life! What a wonderful young man he has become, I remember Kimball always really liked Gabe! I can't believe how big he has grown as well as your sisters.

Jenni said...

What an amazing post. Your mom is such an inspiration to me....simply amazing! And you are following in her footsteps. I can't believe how big Hailey and Gabe are now....that is nuts! When did I get so old??? :)

Rachel said...

Shamae,

WOW thanks for sharing Gabe's story with us. It truly is an amazing story.

I will be the first to admit..... you want to talk diabetes.... I can talk diabetes. Unfortunately I don't know a whole lot about Autism.

I must admit that when it comes to Autism I'm extremely confused. My goddaughter has been tested for it. First they said she had it, then they said that she didn't... then they wanted her tested again... honestly I'm really confused!

Your story is a powerful one with lots of hope... and love. Kuddos to your whole family... especially your mom!

tzongyih said...

1st time been here and I love it!
Love life, yeah!!

Reyna said...

Shamae,

Thank you for introducing Gabe to us and his beautiful story of perserverence, family love, and understanding. Your family is simply amazing.

phonelady said...

shamae now I see where you get your great mothering skills from , your mom is a special lady and alot of mothers would not have had the strength to raise an autistic child . Kuddos to your mom and your sister and all of you for being Gabes support system .

sarefamily said...

geez.... guess I haven't seen Gabe in a while, I can't believe how big he is now... he needs to hang out with my 'little' brother.... they are about the same height.... we are the shorties now!!!! Glad he is doing SO well!!

Wendy said...

LOVE LOVE LOVE THIS POST! Bravo, Sham :) Gabe is amazing...as is his wonderful family!

Beautiful post, my friend. An awesome tribute!

Heidi / Jack's Pack said...

What a beautiful post with such an inspirational story! Sounds as though your mother was a wonderful role model. I admire the way she researched, worked with Gabe, worked with autism, persisted and persevered. She must be so proud. I can tell that you're proud! :) Keep writing about autism and advocating for your brother!!

Laura said...

Wow, what an amazing family you have. Thank you so much for sharing Gabe with us. He sounds amazing.

I love you and your awesomeness!

DNQ

Dave and Jana said...

Shamae you always write the greatest posts! Thanks for that! Hope your doing ok!

The Lane Family said...

This was an amazing post Shamae. No one truly understands the challenges of having kids with different needs until they are there and then I truly believe it is the mom's who do the most to make their lives as normal as possible.

Your mom sounds amazing!!!

Donna said...

No wonder you deal with YOUR Holland so well... you grew up in a Holland....
Shamae you are truly inspirational. Thank you for sharing Gabes story... and thank you for being you.
(((HUGS)))

Wendy said...

Thank you for sharing this with all of us. It gives me a chance to know you even more and I love that. Your brother is obviously amazing and I think it so great your family can look to him as such a great example of overcoming the challenges that life throws you! Love you..

Trista Hibberd said...

Thanks. I really enjoyed reading that.

Valerie said...

Thank you for this post. Working as an ABA therapist for kids with autism is so much more than a job for me. My dream for all children and families with autism is to mirror your family. To love their child regardless of a label, and to strive to help that child obtain THEIR highest level of independence-whatever that may be. Thank you for your commitment to educating others about this spectrum.

James said...

Thank you for sharing your story. I think it's great how you show that autism is not a hopeless disease that sucks the life out of everyone and means someone with it will never interact with others.
However, I have to caution you on linking to autism speaks. Their group has pretty much stood for the idea that autism is akin to cancer and should be wiped off the face of the earth. Many people with autism or Aspergers are downright disdainful of the group. Many of their marches have been met with protests from groups like the Autistic Self Advocacy Network (ASAN).
For example, AS did an extremely negative video called I am Autism and one of the lines was "I am autism and I will make your family split apart and create despair for parents."
Honestly I think the organization would be mad at you because you proved that autism is not a death sentence and your family seems to be doing well. Even their website is very hateful in a backhanded way with how it says "tell your other kids it's not their fault their sibling has autism and there isn't anything that can be done to fix it."
That's something you tell a kid to help them with a death in the family or divorce, not a diagnosis of a disability.
Yes, autism is challenging and yes it often does require a lot of specialized one on one help or other coaching. But the best way to help people with such a condition is to be loving and supportive like you were, not spread fear and scare mongering and then grossly overpay your executives of a supposedly non profit organization.

James
- 25 year old with Aspergers