Monday, April 2, 2012

Autism Awareness Day - Are You a Parent in Denial?

Today, I am participating in "Light It Up Blue" for Autism Awareness Day. I do it to help give a voice to the 1 in 88 who have been and will be diagnosed as being on the spectrum because more attention needs to be given to this issue. I also do it for my son, Bubba, who is on the spectrum himself.

Almost everyone has heard of Autism, however, there is still a big stigma that comes with the diagnosis. The belief that Autistic kids all fit in one mold, that there is one general type of manifestation of the disorder causes those who don't know to stereotype and misjudge these angels and that often leads to discrimination.  Sadly, it's that fear of discrimination that causes many parents and caregivers to not seek out the help they need for their children. That's what this blog is about today. No one wants to accept or even admit that their child may have Autism or any other disorder, but I'm here to tell you that it's not the end of the world, that you don't have to be afraid of accepting the diagnosis and all that comes with it.

No one knows their child better than their mother and father, and when my precious Bubba didn't speak when he should, wouldn't call me Mommy and cried and screeched at certain sights and sounds, I knew in my heart that something was wrong. Instead of listening to the voice in my head, I chose to suppress it and make excuses and reach out and grab a hold of all the reasons others gave me for his odd behavior.

"He'll outgrow it."
"All children develop at their own pace...just give him time."
"He's just sensitive."
"Do you want him to be sick? Just let him be."

And I did just that, I let him be. But as he got older, there were signs that couldn't be ignored. We took him to the county and had Child Find evaluate them. In a  single, 15 minute session, they determined that he was functioning normally, but that the error was with me, that I chose to keep him at home and homeschool him instead of putting him in school with his peers. So I accepted that diagnosis, enrolled him in school and waited for the issues I'd notice to clear up. Not the case. Instead, things pointing towards Autism became more clear. He would not socialize, he would not participate with groups, he would not make eye contact with others. Again, I tried to rationalize and accept what offerings of hope people were giving me.

"He probably just doesn't like the other kids."
"I was the same way, Bubba's just a loner."
"Do you want him to be sick? Just let him be."

It took his wonderful preschool teacher, Ms. Judi, sitting my husband and me down and telling us, "Look...there is a problem." Hearing her voice everything that was in my heart, her listing all the issues I had noticed, all the issues that weren't being resolved with time as I believed would happen, broke down my wall of defiance and I decided that the only way I could help my son was to accept that he needed help. My decision to switch from defensive to proactive is what, I believe, was the turning point in Bubba's life and his future. With her help and the help of his other teachers and counselors, I managed to get the county to do a full assessment and get him the help he needed to become a better him. With the establishment of his IEP, the start of occupational, speech and behavioral therapy, we were able to unlock his potential and create an environment for him to thrive. My only regret is not accepting earlier what I knew in my heart to be true because, as wonderfully as he is doing now, I wonder where he could be if I had moved sooner.

This is why I implore parents and caregivers to take note of that feeling in your heart that tells you something isn't right. Don't squash it down, don't listen to the advice of others who may be saying what you want to hear in their efforts to make you feel better. Listen to yourself. When you don't and you choose to ignore the signs that your child may need more than you can give, you are only delaying the inevitable and making things harder for you all. This is the reason I feel that Autism awareness is so important! We need to teach those who don't know about the disorder the facts so we can remove the stigma that comes with the diagnosis. Shame and fear keep parents and caregivers from seeking out help, because we worry about the prejudice and judgements that come with the diagnosis. If only those who do misjudge would learn that Autistic children, even the non-verbal, have the ability to communicate if the proper method is taught, and that they love and feel just as much as a neurotypical child. Or if they could see that with the proper therapies and early intevention that many children on the Autism spectrum can grow and go on to live totally independant lives, working, playing and raising families of their own. Or if they could understand that being Autistic does not always mean mentally disabled as some of the children on the spectrum are highly intelligent and are capable of intellectual thoughts and actions. A diagnosis doesn't have to be the end of the world. It can be the beginning of a new world of possibilities for your child if you are willing to seek the help.

I admit, there are times when I do feel down about Bubba because I worry. I worry about how he'll feel when the children start to notice and make mention of his tics and quirks and how he'll react if they point them out or make fun of him. I worry about how he'll do when it's time for me to let him be more independant, when he gets to the age where he'll need to, want to, venture out more without me around. I worry about how he'll feel when he is old enough to understand that he has Autism Spectrum Disorder, and what that'll do to his self esteem. I worry! But I know I'd worry just as much if he were a neurotypical child.

Some words of advice to those who do decide to seek help: Go with your gut. Don't just accept what you are told. According to the first set of Child Find "experts" that saw Bubba, he was completely "normal". According to the well-known child developmental specialist that saw Bubba this past Fall, he was simply ADHD, not Autistic. In both instances, although I was momentarily elated by the diagnoses and eagerly grabbed them and waved them around, my gut instinct kicked in and I sought futher answers. Bubba is now classified as "ADHD with Autistic traits", and I think I've finally found a diagnosis I'm happy with, so I can stop looking and work on helping my son work with his designation.

Has his diagnosis been the end of the world? No. Is it hard? At times. But I am so proud of Bubba and all the strides he's made that sometimes I think my heart might burst. I love him just as much as I love Goose, my neurotypical child, and it has never even crossed my mind to feel otherwise. I love Bubba's personality and I can't imagine him acting any other way, and I think I would mourn the loss if he did. Besides, the diagnosis does not define our relationship. I am his Momma, and my duty is to be his best supporter and I will be forever. No diagnosis will ever change that for me, and it shouldn't for you either.

1 comment:

  1. Thanks for sharing, I remember when my son was on a waiting list for over a year to see an Autism team of specialist in a city an hour or so away. Just to hear their team say he is ADHD and no autism. The drive home was a long and upsetting, I knew there was something there, I knew my son. Untill months later those same people sent us to a behavioral place in our home town, and what do ya know, the dr there says Autism/Aspergers. I knew all along my son was autistic, just didn't know enough about Autism and the Spectrum. It has been a journey and will continue to be. But wouldn't trade him or this journey for the world. Thanks again.. Heather