In August 2008, my son Aidan was diagnosed with a disability known as autism. Officially he has what is called PDD-NOS or Pervasive Developmental Disorder Not Otherwise Specified, which means he has atypical autism. He hadn't even turned five years old yet. In some ways it was a relief - it was good to finally know why my beautiful, smart, smiley, talkative, almost potty trained little boy had suddenly stopped talking, potty training, and began having regular meltdowns with little or no warning or reason. I faced a lot of that horror by myself - my husband at the time was away with the military, and then we moved to Texas and he was busy otherwise. I had no idea what I had lost my baby to - they said he had good hearing so it wasn't that, but no good reason could be given for his regression. Finally, a year after leaving my husband and moving back to Alabama, Aidan's pediatrician referred him to the TRIAD clinic at Vanderbilt University, which specializes in diagnosing, researching, and assisting with helping to recover from autism. Dr. Warren spent 4 hours with Aidan, playing with him and talking to him, all part of a battery of tests that helped him finally determine what we had feared - Aidan was autistic.
When someone gives you news like that, even when you have your family there with you, it's completely overwhelming. Like getting caught in an undertow. And there is so much information they give you about what autism is and why it might have happened and how you can maybe reverse some of the symptoms. You start trying to get in touch with all these people to get help for your child, and in so many cases they don't help or can't help or won't help. I struggled with the schools and got turned down by the Social Security Administration and wondered why speech therapy and occupational therapy and behavioral therapy weren't covered by insurance. I began investigating whether I should start refusing to allow my son to be vaccinated, whether I should change his diet to one without gluten or casein or sugar or strawberries or blueberries...
And no matter how much you explain to people that your child is autistic, and what that means, they really don't seem to get it. When he has a meltdown in the middle of the floor because you told him no, people just assume you have spoiled your child and are letting him manipulate you. What they don't realize is that the reason your child is so out of control is because on top of being in an environment where every sound, every light, every touch is more than he can handle, you've just changed something on him without properly setting an expectation and his brain, the way it works (or doesn't work) can't handle it. He literally can't maintain control of his own behavior. And it isn't always easy to know what will trigger him, because even though he's five years old, he doesn't talk well enough to tell me what's going through his little head or that he's feeling completely overwhelmed.
When you choose to quit your job to stay home with your little boy because you feel that's the best way for him to continue making progress, it's a bit of a slap in the face when people look askance at your choice. I'm doing what I know is best for my son. I can't afford to pay a professional to give him speech and behavioral therapy, and once a week or an hour every other night before bedtime won't do him a bit of good. I don't know what I'm doing of course, so I have to research and learn to be a speech therapist and teach my child how to read faces and non-verbal social cues. I have no idea if changing what he eats will help him, or if it's a good idea to possibly make him vulnerable to deadly diseases in order to prevent him any further regression from a vaccination.
It's SOOO frustrating to try to help your child when even DOCTORS haven't a clue what causes autism, what triggers it, how to treat it or whether a child can ever totally recover from it. I'm trying to be brave and take it one day at a time. And I literally have people who will tell me that I am a bad mother because my child sometimes talks back or throws fits or doesn't eat the healthiest food. They don't understand that an autistic child doesn't always understand that when he echoes a phrase he's heard another child use or when he uses the tone he's heard an adult take with another adult that it is socially unacceptable. They don't get that I don't LET my child throw fits, I just can't always stop one once it's in motion. They don't see that there are days when if I want my child to eat anything, I let him eat whatever he's willing to put into his body and hope that I can balance it out with something else later in the day or week.
And yes, sometimes I need a break from Aidan. And yes, sometimes I am angry that my child is autistic. And yes, some days I question my decision to have a child (which wasn't planned, but every woman has alternatives when she finds herself pregnant). But know this and NEVER question it: I love my little boy with ALL my heart. I would not give him away. He is an amazing little boy who has worked VERY hard to recover from his disability and has made such great progress. He is so smart and wants so bad to make those around him happy. He has bad days, but he also has very good days which more and more often outnumber the bad days.
Thanks to all of you who have supported me as I raise Aidan and we defeat autism together. Especially Jeremy and my mom who have provided so much help and love that I am forever in their debt.
For more information about autism go to www.autism-society.org
I selected this post to be featured on my blog’s page at Autism Blogs.
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