CNN wants to hear your autism story
by Lisa
On Wednesday, April 2, CNN Medical News is planning to devote their entire day to autism coverage.
If autism touches your life, CNN wants to hear your story. They are hoping to dispel misconceptions about the disorder in a report called Myths of Autism and are interested in what you think the prevailing myths about autism are.
I’m planning on submitting a story myself — it’ll question the belief that Autism cannot be reliably diagnosed before a child is three years old. If you want to Contact CNN, too, go to CNN’s health blog to see the topics the network plans to address and how to share your story.
April 11th, 2008 at 11:06 am
Josie,
I too have been through close to 9 daycares with Cade. All it took was one of his meltdowns for them to use “we’re protecting our other children” excuse. Needless to say, they were not very nice about it. My husband (who is not his biological dad, but is a father to him) and I have found that the hardest part of having a child with Autism is other people’s ignorance. Do not give up. Stand up for your son. If you have to, and this is what I have done, tap every source possible to push Autism in their face. They will always remember the information you provide. If everyone could do this, more understanding would follow. He is your strength. Your children are where you should pull your strength from. Of all things, isn’t it worth it for him to acknowledge that you do take such good care of him and his sister? If my son could say that, I would be overjoyed. He does show it though.
Also, because of the daycare situation, I’ve almost had to quit my full-time job in order to stay home because I had such difficulty finding before/after school care for Cade. I went through 9 daycares and a nanny before finding someone (another nanny) that was willing to provide him not only with a watchful eye, but cared enough to get involved and find ways for herself to communicate with him and ENJOY taking care of him. She is a very patient woman and it definitely takes that when they have moments. I didn’t want to even leave him somewhere that I felt they were just going ahead with training because the law required it. I took it upon myself and trusted my gut.
Maybe work a part-time or telecommuting job? That was going to be my last option.
Oh and even though you feel overwhelmed by having to explain Aspergers to people, that’s great. The more you talk, the more it’s HEARD:)
April 3rd, 2008 at 8:07 pm
I just wanted to make sure that everyone knows just how much my son means to me and my husband. Timothy is the smartest little boy I have ever meet. He can bring so much joy to you when you are at your lowest. He will look at me and say “Thank you Mommy, for doing everything you do to take care of me and Krysta. I know we don’t make it easy for you, but we do love you. You know that we are just kids though!” That will make me laugh so hard. I’m just so stressed out and tired of running into the brick walls. I have to fight for him, if I don’t then who will. He deserves to have every opportunity that any “normal” kid will have and I won’t stop!! I will give my son every thing I have until my last breathe, and even then, I will find a way to take care of him!! He is a precious gift, and I would not want anything that what he is. He allows me to view the world in a whole new light. And I thank him for that!!
April 3rd, 2008 at 7:48 pm
I am so relieved that Autism is being publicized! However, there are still so many people who think of my child as a monster or a demon. I do wish that they would discuss all aspects of the spectrum. You always here about “typical Autism” so when people hear that my son has it, they tell me that I am full of it because he can talk. I then have to go into the automatic encyclopedia mode telling them that the form my son has is called Asperger’s. That just because he can talk doesn’t mean that he doesn’t have the disability. My son has been kicked out of 8 day cares because of his meltdowns. We have gone from a 2 income house, to my husband having to work his butt off. I have no choice but to stay home. We can’t get food stamps or any of the help that we need because they don’t recognize Asperger’s. I just don’t know what I am suppose to do. I do my best, but my best doesn’t pay my bills or feed my kids. How is it that there are so many success stories (which is so wonderful) but we just fall through the cracks?
March 25th, 2008 at 9:43 pm
Jennifer,
It’s so wonderful to hear of Cade’s success and that he is spending so much of his school day in a regular classroom!
Your story is truly the reason why Easter Seals believes early diagnosis and early intervention are crucial for children to get the right help at the earliest stage of life. Best wishes to you and Cade for continued successes!
March 25th, 2008 at 9:39 pm
Sheryl,
I couldn’t agree more that we have a responsibility to be sure we fit the puzzle pieces together and fill in the missing pieces. It’s staggering that a new diagnosis of Autism is made every 20 minutes. Currently, 17 million Americans have a family member living with Autism. Easter Seals strongly supports the Combating Autism Act and has worked to see it enacted into law. This legislation helps researchers and service providers better meet the needs of individuals living with Autism, as well as work to help families receive early diagnosis and critical access to interventions.
Thank you for taking the time to share Joie’s story with us!
March 25th, 2008 at 9:28 pm
James and Sarah,
I agree that Autism awareness should be on everyone’s minds throughout the year. I’m glad that April, being Autism Awareness Month is giving us a chance here at Easter Seals and everywhere to get lots of attention with local and national media. Thank you for sharing your story. It is to professionals like myself and inspiring to those families who are just now beginning their journey into learning what a diagnosis of Autism will mean in their families and for their children.
March 25th, 2008 at 11:36 am
At 2, my son Cade was diagnosed with Autism. After he started lose acquired skills, we began to worry and had him evaluated. We were then told that “he would eventually catch up” and set his case aside. When I moved to St Louis 2 months later, I summoned help from the Early Childhood center, where they came to our home. It was then he was finally diagnosed with PDD-NOS, which eventually 2 years later became a diagnosis of Autism. I felt like we lost valuable time in that year where Cade could have started therapies at even a younger age. After the diagnosis of PDD-NOS, he started a intensive therapy and has been ever since. At first, he had low muscle mass, so he was not only getting speech and occupational therapy but physical therapy as well. Our school district, has done a wonderful job with Cade. He loves going to school and being around his classmates. His classmates love him and enjoy helping him out when he needs it. They’ve done such a great job with him, that now he’s spending almost 90% of his day in the regular classroom with the other children. Whereas, before he was in there only 1/4 of the day. There isnt a cure for Autism, we know that. But I truly feel, especially in my case, that at the least, the children deserve the best therapies and treatment, so they can at least give it their all. I wonder what parents do with their autistic children who are unable to receive these services. It scares me to think that if I had stayed where I was, that Cade wouldn’t be where he is today: laughing, socializing, above avg intelligence, communicating his own needs, etc. What wonders if MIGHT HAVE done if we caught this in his baby years.
March 25th, 2008 at 10:57 am
I’m glad to hear that more attention is being paid to the early diagnosis of autism in children under three years of age. For too long, many of these young children have “fallen through the cracks” due to the myth that autism cannot be diagnosed before a child’s third birthday. I hope that with the American Academy of Pediatrics announcement made last October regarding the need to screen children at least twice before age three will help to remedey this situation. And kudos to you, Lisa, for addressing this topic.
March 25th, 2008 at 8:41 am
Maddy, James, and Sarah,
For one to experience the love that is shared between a child with Austism and their loved one(s), is truly a treasure of life.
Thank you so much for sharing.
March 25th, 2008 at 8:09 am
Our daughter was misdiagnoised with ADHD until the age of 7. That is when we finally got the offical diagnois of PDD-nos. (pervasive development disorder-not otherwise specified) She is the most beautiful little angel God has given us. She is very verbal and has a very extensive vocabulary. She is in the above gifted almost genius level of intelligence. She has her meltdowns, her sensory issues, and anxiety problems. Even after the hardest day with her where she is very sensory overloaded we still would not trade her for a “normal” kid. She is a joy in our life. As I sit here and write this she is busy crying about her socks!!! They feel like a knife is in there, don’t you know. All of her other socks that are special with the seam on the outside are in the wash. Mom made a big goof up on that one!! But even though she is in the midst of brewing a horrible meltdown, you can’t help but look at her and think that she is one cute cookie!! Anyways, I am so glad that people are willing to come and post a little peek into their lives. Autism awareness needs to be on the top of everybody’s mind not only during April but everyday.
March 24th, 2008 at 10:37 pm
This is awesome and Maddy, I loved your story! I can’t wait to hear about other stories in CNN’s Myths of Autism. Keep us posted on when your book gets published!
March 24th, 2008 at 9:09 pm
Maddy,
I believe your story should be published and I look forward to reading your book. The reason Easter Seals is focused on providing families with intervention and supports at the earliest age possible is so parents have the information and tools they need to meet their children where they are. The symptoms of Autism vary so greatly from one individual to another. We want to provide families help, hope, and answers so children can learn, live, work and play as they grow up to be the little angels that kiss you so hard, words aren’t necessary!
I thank you so much for sharing your story with us at Easter Seals. Your grandson sounds like an absolute treasure and is lucky to have such a dedicated and passionate Grandmother.
March 24th, 2008 at 8:37 pm
I am a Grandmother raising her incredible 11 year old autistic grandson. He was diagnosed at 17 months and was started immediately in to early intervention through the Birth to Threes years program. Since that time, I have attended numerous seminars in the Northwest, learning all I could about the treatment for Autism. I have tried everything from the Gluten/Casein free diet to the Secretin infusions. AND everything in between. Many children have been “recovered” through these programs and numerous Behavioral Methods. I applaud these beautiful children and their courageous parents.
However, sometimes all the treatments, special education, various medications, applied behavior modification…..and all the prayers in the world, do not always reach your precious child. I think that is the norm. Rather than the recovered children.
My precious grandchild is so smart that it staggers the imagination, not to mention his Special Ed teachers and his adoring Grandmother. But, he is not recovered…..not even close. He has never uttered a word and is still not potty trained. He is, however, the greatest single event to transform my life in all of my 65 years of living.
I salute his beauty, his patience, his fortitude and his courage. He is loving, kind, sweet and is adored by his sisters. If someone meets him, he changes their life forever.
This story won’t get printed, and that is quite OK. I am writing a book about my “unrecovered grandson”. He is the greatest child in the world.
He can’t shoot the winning basket in a game, but he can dribble a ball without looking at it. He can’t talk, but he can spell any word he wants…..just can’t put a sentence together. He can’t say “I love you”, but when he puts his arms around my neck, looks into my eyes and kisses my as hard as he can!!! Words aren’t necessary.
I salute my strong and loving grandson.
Thank you for your time.
Maddy Adams