Wednesday, April 21, 2010

Living With Autism

Many of you may remember me mentioning in my New Releases for April blog that April is one of my favorite months because it is National Autism Awareness Month. The reason behind this is because my son Dylan has autism. Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many refer to this group as Autism Spectrum Disorders (ASD). Autism is becoming increasingly more prevalent as it is now diagnosed in 1 out of every 110 children and of those, 1 in 70 are boys. This means it is more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined. But enough about statistics, I want to tell you about Dylan.

From the time Dylan was very little, my husband and I noticed that he wasn’t progressing at the same rate that other kids his age were. He did so many activities later than others: hold his head up, crawl, walk, talk, speak in sentences, etc. He didn’t play socially with other kids, was extremely sensitive to any loud noises/sounds, and he struggled to do certain simple tasks. When we would talk to his pediatrician about it, he told us that some kids just did things at different times, so we didn’t think much about it. Later, we changed pediatricians (which was a blessing!) and when Dylan went for his 3-year check-up, we voiced our concerns to the new doctor. He saw what we saw (finally!) and referred us to a neurologist, who then referred us to a child behavior and development specialist at the University of South Florida. It was a long process as they had waiting lists because children were seen in “blocks”. (Thankfully, today it’s a much speedier process.) The wait killed my husband and me. We experienced so many sleepless nights and I cried more times than I could count. We felt like we had waited years already (which was pretty accurate) and we didn’t want to wait anymore. We just wanted to know so that our little boy could get the help he desperately needed. Dylan was finally seen and tested in May 2004 (at four years old) and was diagnosed with PDD-NOS. We had a feeling that he was autistic so while it was heartbreaking at the time, it was also a relief because we finally knew. The specialists informed us that Dylan was on the milder end of the spectrum, so we counted our blessings for that.

We moved to Georgia in August 2004 and my husband and I agreed that I would quit my job and stay home with the kids (my daughter was 4 months old by this time) because it would be better for them. One of the very first things I did was register Dylan for Pre-K. The school system where we live is phenomenal when it comes to special education services and we feel truly blessed by the many exceptional teachers Dylan has had over the years. They have helped him strive in so many ways. He is very bright kid and loves to read, but is distracted easily and still lacks the social skills of children his age. He often prefers his own company and enjoys what he calls “my time”. In fact, he has only started seeking out other kids his age to play with in the last year or so. He works very hard and has maintained an A/B honor roll status and perfect attendance since first grade. He also recently placed third in his school’s Spelling Bee and reached the 250 AR point club, which is something we never could have imagined happening when he was diagnosed. Needless to say, we are so very, very proud! He still has his little quirks, but everyone knows that that's just Dylan. :) He and his infectious smile have opened our eyes (and our hearts) to view everything in a positive light. He has taught us to appreciate every single accomplishment, whether great or small. He still struggles, but I believe that it just makes him stronger and the end results even sweeter. God had a plan for me to be Dylan’s mom and I’m so glad He did. Yes, my son has autism, but we don’t let it get us down because we wouldn’t have it any other way.

Like I said, we consider ourselves lucky that Dylan is on the milder end of the spectrum; however, so many families aren’t as lucky. Some children never speak and some need to be cared for for the rest of their lives. My husband and I hope and pray that Dylan will be able to live on his own someday. Only time will tell. And if he can’t, we’re fine with that.

In the meantime, we will do our part to help Dylan and children like him. One of the things we do to help is walk. Yes, walk. Last year, we put together a team (Dylan’s Dream Chasers) and participated in the Georgia Walk Now for Autism walk and what a wonderful experience it was! 20,000 participants gave up a Sunday morning to walk 2 miles in support of this worthy cause and a lot of money was raised. They had so many games and activities geared towards autistic children and valuable information for their parents and grandparents. It was amazing.

This year, we are continuing our tradition by raising money and participating in the walk on May 23 in Atlanta. I know that most of you don’t live near Atlanta and are unable to walk with us, but I’d like to ask that if you are able, that you please consider supporting our team by donating to this wonderful cause.

Dylan’s Dream Chasers team page
Andrea’s page
Dylan’s page

I thank you from the bottom of my heart and will leave you with this – a question that is often asked is, “Why do you walk?” My reply:

Because from the moment you were born I knew you would change our lives forever.
I walk for your future.
I walk for your infectious smile; no matter how bad the day seems, seeing your smile changes everything.
I walk for the day we can go to a movie without you covering your ears through most of it.
I walk for the day that you may experience love.
I walk for the children who can’t.
I walk for the parents who are in denial and don’t want to believe their child has a disorder.
I walk because you are my son and I love you with all my heart.

Do you know someone affected by autism or one of the autism spectrum disorders?

For more information about autism and Autism Speaks, please visit


  1. I have a ten year old nephew who is on the spectrum. His autism is on the moderate to severe side and he is non-verbal. He is a great kid, very laid back and affectionate with his family. My sister recognizes, though, that he will never be able to care for himself. I give her a lot of credit because I know it has not been an easy road for her.

    My nephew was developing normally and starting to speak. Sometime between 12-18 months, however, he regressed. We could actually see it. He went from having a few words to no speech at all. He also used to play certain games with us, but then regressed into solo play.

    Autism awareness is very important. (My husband also teaches children who are autistic and who have other developmental delays.)

  2. I don't personally know anyone who is affected by autism, but one of my best friends is a Special Education teacher and she has worked with a few autistic children. I know that Jon Stewart has raised money by hosting "Night Of Too Many Stars: An Overbooked Benefit For Autism Education."

  3. My son is autistic, he is 20 years old now and graduated high school last year. The early years were difficult to say the least. He was 4 years old before he spoke and he will always have a speech impediment that makes it difficult to understand him sometimes. (He still "backs" so consonants are left by the wayside.) I can vouch for the special education programs, he was in school from the age of 3.
    His autism is on the light to moderate side, he will never live by himself but he stays by himself while I work, he can use the oven and the microwave, he has a small circle of friends (I often wondered if that would ever happen). There will always be some difficulties but he was and always has been my blessing.

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  5. Andrea, my friend, you need to post a "tissue needed" warning at the top! I knew I would tear up a little (as I always do when people talk about their children), but girl when I read your reasons for walking I just about hit the ugly cry this morning . . . and I just put my makeup on!! :-)

    Thank you for enlightening me on Autism. While I know a tiny bit about it, I do feel more informed by reading your blog.

    You are right, God did have a plan that YOU would be the mother to this wonderful, bright young boy. And I can hear the mother's joy in your voice when you tell me about Dylan's latest achievements.

    Keep walking!

  6. Have you looked into the Brain Balance program? There are three locations in GA. I just went to an informational meeting because my daughter has multiple sensory processing disorder. They are doing some great work...

  7. Thanks for sharing a bit about your nephew, Suzanna. He sounds like a very sweet boy and like my Dylan as far as being laid back and affectionate with family. Family is so very important for support. And I have great respect for people like your husband who dedicate their lives to help children with special needs. Yay for him! Thanks so much for stopping by!!

  8. Hey, Jane! I'm really glad to see so many celebrities recognize that autism awareness and education is so important, especially with how common it is becoming. And extra special kudos to your friend!! :)

  9. Dianna, hugs to you, my dear! You know exactly what we've been through. Dylan is only ten, so he is a long way from graduation, but you have given me hope! And how wonderful that your son can stay home and has a close circle of friends! Dylan plays great with his sister and seems to interact more with kids younger than him, but has become more and more open with his classmates. Thanks so much for sharing a little bit about your son with us. He sounds like a great guy!

  10. Thanks, Buffie. Can you imagine how many tissues I went through while writing it? LOL You know, sometimes I feel like I'm bragging when it comes to Dylan's achievements, but it's just that I'm SO overjoyed that I have to shout it out! :)

  11. Jennifer, Dylan went through two sessions at the Brain Balance near us a couple years ago. It was an amazing experience and we learned so much, especially about how the brain works and nutrition. I was going to include it in my blog, but it was already getting too long! lol Thanks for stopping by! I hope BB works for your daughter! :)

  12. Andrea, thank you so much for sharing your story with us. Your immense love for Dylan shines through with every word you write. Like Buffie, I also was reaching for the tissues!

  13. That's my Dylan! I am so proud to be his aunt. :)

  14. It's my pleasure, PJ. Many parents don't like to talk about it (and I understand as I used to be one of them), but now I feel like the more people talk about it, the more others will become aware and accepting of it. :)

  15. Trisha, Dylan is lucky to have such a wonderful, loving aunt. And I'm proud that you're my sister. :)

  16. I'm off to run some errands, including delivering some cookies to my daughter's class for her birthday. Be back in awhile!

  17. Andrea - thank you so much for sharing your story with us and introducing me to your amazing and wonderful family. I have no first hand experience with autism so thank you for enlightening me. I wish I lived near Georgia so I could walk with you and Dylan; but know on May 23rd I'll be there in spirit.

  18. Andrea, wonderful, heartwarming post.

    Autism is becoming more and more prevelant, like Suzanna's husband, mine is a teacher as well, and he had 4 students (all boys) with various levels of autism, shocking, for we are in a very small town.

    Also, I have a nephew with a very mild form, he too, cannot handle loud noises,(among other things) but has gotten better at coping, he is 7, and was in a great pre-school program that helped him cope with social skills etc. He is in a regular classroom now, and seems to be handling it so far.

    Awareness is so important.

  19. Andrea, I'm with Buffie and PJ on the need for tissues. Your pride and joy in your son and his achievements are beautiful and moving. And what great pictures.

    I have a friend and former student who has an eight-year-old son with autism. He too is bright and beautiful, with a smile that can light the world.

  20. Andrea, honey, count me in on the "needs tissues" group. Your reasons for walking made the tears flow--such a beautiful tribute to your beautiful boy!

    I have known several people whose children have autism--mostly on the mild side. I can't remember knowing anyone when I was younger, but maybe they were not properly diagnosed then.

    Know that you, Dylan, your family and all of those touched by autism will have my support when you walk next month.


  21. Anrea, thank you for sharing such a lovely family story.

    Being a teacher, I have known only 3 or 4 students with autism. A few surprised me when I found out they were autistic because I think people are used to hearing about severe autism. Some of the kids are very bright and some are academically challenged.

    One boy I have in Iowa History has very mild autism and he's a neat kid. He reiterates everything I say, but, wow! He states the directions in a very professional manner.

  22. My pleasure, Marisa. I love to talk about my boy! :) It's great to know that you will be with us in spirit!

  23. Yay for your husband, Karyn!! And yay for your nephew, too! Like him, Dylan is also in a regular classroom that includes a teacher assistant for him and a few other kids. Early intervention is sooooo important!!

  24. Thanks, Janga! Perhaps I should have included a tissue warning, lol. Honestly, there is just something really special in a child's smile. When Dylan's teachers sign his yearbook every year, they always mention his smile. :)

  25. Thanks, Gannon! You know, I have often wondered the same thing about whether kids that I went to school with had it. I remember one of my friends in elementary school rocked back and forth a lot and Dylan does that sometimes, so perhaps he did. Thanks for the support!!

  26. Deb said: A few surprised me when I found out they were autistic because I think people are used to hearing about severe autism. Some of the kids are very bright and some are academically challenged.

    You're so right, Deb. I've had a few people look at me and say, "Really?" when I mention that Dylan is autistic. And my cousin has Asperger's and is making straight As in his second year of college. He makes me proud! :)