Today is World Autism Day. In honor of this day and of my Bubba who was diagnosed with High Functioning Autism at the age of 23 months, I wanted to share some stats about Autism. If your life has not been touched directly by Autism, you probably know someone who has. Please take a moment to read over this. Feel free to share it with anyone who may benefit.
Autism is a neurobiological disorder for which there is no known cause, prevention or cure.
1 in 150 people are diagnosed with Autism. It affects more people than pediatric cancer, diabetes and AIDS combined.
It occurs 4 times more often in boys than in girls.
Autism impairs the ability to communicate and relate to others.
It typically results in rigid routines and behaviors and can range from mild to quite severe (to the point of a person being "locked" inside themselves without the ability to communicate or even "notice" others).
Some children are this way from birth while others seem to have just "lost" skills and regressed (as was the case with Logan).
Parents are usually the first ones to detect anything is wrong while many pediatricians take a "let's wait and see" approach. As a result, many of us parents find ourselves having to educate our pediatricians in the latest research and therapies.
Early intervention is absolutely critical.
Intervention and therapy can include physical, occupational, and speech therapy; biomedical intervention; special diets; social training. All of these are expensive (speech therapy is around $200/hr) and most are not covered by insurance.
Every child has different symptoms and responds to different therapies. There is no one way or standard for treating this.
Raising a child with Autism is hard, very hard. It's a lifetime job. It's lonely, frustrating, maddening, sad, surprising, depressing, rewarding, draining.
Autistic children look "normal" and so if they act up in public, people assume that you just have a bratty child and should be disciplining better. Many are even quick to let you know what they think about your parenting.
Many couples with an Autistic child end up divorced.
Many pediatricians don't keep up with the latest information that comes up about Autism because it's all anecdotal. Meaning, there isn't concrete medical research to back it up. How can there be? Every child has different traits and responds to different things. There is no way to do any conclusive studies when that's the case. And the funding is definitely not there. And so moms of Autism are experts on the subject. We've read all the books, studied the research, tried every option. You have a question about Autism? Find a mom of Autism, not a doctor.
I feel especially lucky in that Bubba responded so well, so quickly to intervention but he will always have his "issues" and life wasn't always this easy. He lost speech around 13-14 months and didn't speak again until he was 4. CJ and I didn't go out together once in 3 years. For 3 or 4 years, I HATED going to church. It was just a battle of how long we could make it before Bubba was just too unmanageable and we would have to leave.
It's hard to call on even family and friends to help. If you're not even sure how to deal with your own child, how can you ask someone else to? Honestly, it's even hard to keep loving your own child when he's been biting you, screaming at you for hours, trying to claw your eyes out or even choking you, and all this during a time when you never hear him say mommy or daddy and definitely not I love you. Maybe he never will? How can you ask someone else to give him the same kind of unconditional love? It's not realistic. And so as moms, we are typically isolated and alone. No matter how many fits someone may have witnessed my son throw, they have never seen him at his worst. I'm not even sure if Dad (in my case at least since I'm the stay at home parent) has seen the depths that I have.
If it's possible to have a "typical" case of Autism, Bubba is not it. Most kids deal with more issues than he does. If you know Logan, he seems like a "normal" kid nowadays. This should not be your picture of Autism. Autism is not just having a quirky kid. If you know someone who has an Autistic child, just stop and give them a hug. It's nice to have physical contact that doesn't come from having to restrain or redirect a speeding freight train of energy and determination.
I know this is long, but if you read this, parents of Autistic children will thank you for taking the time to try to understand it better. God bless your day!
Thursday, April 2, 2009
World Autism Day
Posted by Slacker Mom at 10:28 AM
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2 comments:
Sheri,
I'm weeping as I read this! As the mother of a 16-year-old Asperger's son (who has other issues, as well), I feel in every fiber of my being all that you wrote. No one can know until they've experienced it. I'm so glad you are articulate enough to say it so well. I'm going to link to this post from my blog. Thank you and I'm praying for you.
Sheri,
I have really enjoyed reading your blog. I can't for the life of me remember why we got off to such a rocky start when we first met. Reading through your blog, I'm amazed at how much you think like me and how much we have in common.
It is heartbreaking to read about your son with Autism. We have a similar, but not nearly as severe, problem with our oldest son Luke (age 6).
We started noticing problems with his behavior when he was 2. Most of the time he was pleasant and well behaved. Occasionally, he would have violent outbursts. I can relate to your having to restrain your child. There were times that we had to lock him in his bedroom to protect his little brothers from him. He would hit, bite, kick, scream and he would get this wild, possessed look in his eyes. I found myself spanking him all the time.
He had physical symptoms as well. He had tons of drool, even long after the teething stage. He was extra sweaty, especially when he slept. He'd wake up from naps and in the morning just soaked head to toe. We noticed that his ears were always bright read when he was having episodes of behavior issues.
He wasn't like this all the time. That was the most baffling for us. We just couldn't figure out what was causing it. We had noticed his behavior was worse when he ate candy, so we said no to all candy (pop, cool-aid, etc.).
One day, after pre-school, his babysitter reported that he was out of control. Hitting everyone and telling her to "shut up". I talked to his preschool teacher and she told me that the only thing he had was sugar free cherry cool-aid. Not long after that, we left the kids with 2 teenage sisters to go to a funeral. When we got home, Luke was flying around the room. He was unable (not just unwilling) to stop. He was pinching, pushing, hitting, etc. I got down on my knees to get eye to eye with him. I took his face in my hands, looked him in the eye, and told him what would happen if he didn't not stop and settle down. He slapped me accross the face. The first and only time that has ever happened. After taking him into his room for propper punishment, we talked to the girls about what he had eaten while we were gone. They confessed to sharing some of their fruit punch Gatorade with him. The final episode that put it all together for us was a month or so later when he was physically removed from Sunday school because he was pushing and hitting everyone and had bit 3 kids. He had been at my mom's house the night before. We questioned her and discovered that she had given him frosted animal cookies.
We finally put it all together and realized that it was red #40. We began reading food lables like crazy. We made a huge change in his diet. After a couple of months of adding and eliminating things, we finally had a handle on the problem. He can't have anything artificial. Colors, flavors, and sweateners are all out. He is a different child now. He is pleasant and rarely needs a spanking. He is doing great in school, even though he's the youngest kid in the whole first grade at his school.
Before we figured out what was causing the problems, I had reached the point of trying any medication I could get my hands on. I was ready to let him go live with my mom. I just couldn't keep him under control. I felt like I was spanking him all the time. I felt like it wasn't fair to my 2 other children.
Now, I enjoy being around him, his brothers don't run when they see him coming, and it has been nearly 2 years since I have seen the "possessed" look in his eyes.
I tell you all this because I share your experience of doctors being totally useless. They had no idea how to help me. When I shared with the pediatricians at the clinic where we go, all but one has rolled their eyes at me. So, I too am on a crusade to share what we have learned. If it can help just one family then it's worth the effort. I've written letter to the FDA and gotten no response. In fact, the FDA's web site states that artificial food coloring causing behavior problems is just a myth that was perpetuated in the 70's.
Okay, now I'm starting to ramble. I'd be suprised if you have kept reading this long. Anyway, I just wanted you that you are not alone in your frustration with doctors, you need to be your son's own doctor, and your desire to get the word out. You can feel free to share my story with anyone you think might benifit from it. You can give my e-mail address to anyone who might have questions for me. noltensmeyer@peoplepc.com
Thanks for sharing your struggles. I will be happy to pray for your family.
God Bless,
Nicole (Ertel) Noltensmeyer
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