Guest Post: Another Journey of Autism

For the last Sunday in Autism Awareness month, Angieleigh who recently became my publicist, has agreed to tell her story and perspective on Autistic children. 

Being the mother of an Autistic child is no picnic, but I’ve never wished my son to be anything but what he is. When my son was younger people would rudely ask me what was wrong with him and when I’d reply that he was Autistic, they’d shake their heads sadly while whispering they were sorry…all the while pulling their own children back so as not to “catch” Autism.

 

To this day I’m still amused by those reactions. You don’t catch Autism; it’s something one in eighty eight children are diagnosed with every single day. Though, if I am honest, I believe half of those diagnoses are made incorrectly by doctors who can’t – or don’t – spend more than ten minutes with a child while a frustrated parent sits nearby.

 

I have heard that Autism is a tragedy…something to be mourned. Bull. It is not a disease as TV commercials from celebrities implore you to believe. As my soon to be seventeen year old son will tell you, “Autistic kids aren’t much different from ‘normal’ kids; we just think and act a bit differently.”  He gets frustrated by these commercials and we’ve had to turn the channel this month when we see them coming on so as not to upset him.

 

My son has been in counseling since he was three. I disliked half of his counselors, but finally found a good set at a highly recommended office within twenty minutes from our home. He has been on all sorts of medication – Ritalyn nearly killed him as he didn’t eat or sleep for nearly a week – but we’ve finally found what works for him.

 

From the time I first felt him move until this morning, he still has a hard time sleeping. If he doesn’t take Melatonin he could stay up for a day or two, and has when he gets frustrated. We’ve moved from Pervasive Developmental Disorder & Oppositional Defiance Disorder to ADHD and Asperger’s Syndrome. He has been called a “high functioning” Autistic. Within the past year we added Bipolarism to his list.

 

Maybe I’m naive in just loving my child for the sake of loving him. I don’t crawl into bed and sob because my son is “different”. To me he is unique and is worth every tear we’ve both cried and every frustration we’ve had with each other. There are days when we both yell at each other from the tops of our lungs while he looks down at me and I try not to notice that my baby is no longer a baby and is about three inches taller than me. I’m still the only one who can calm him down when he “rages” and am still the first person he gets mad at when things don’t go his way…because he knows that no matter what, my love for him is unconditional.

 

I have an Autistic nephew who is considered “regressive”. He just started talking this year {he’s six} and is just the cutest. He can play video games better than my husband and set up my sister’s laptop within minutes of her bringing it home…though we have no idea how he managed to do that or get the internet working.

 

I don’t treat my son and nephew any different than I treat my youngest son and my niece. To me there’s no difference. I also don’t think that just one month should be recognized as an awareness month. Autism isn’t just in April, we live with it every day.

 

When I’m asked my advice about how to go about finding the right doctors or “dealing” with an Autistic child my advice is this: Go with your gut feeling when it comes to doctors and caregivers. Love your child with all of your heart. There are going to be days when you’re both so frustrated that you just sit there and cry together, but there are so many beautiful days.

 

Thank you, Rose, for letting me share my story.

A huge thank you to Heather, Sarah and now Angieleigh who were gracious enough to share their experiences, struggles, joys and information this month.

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4 comments on “Guest Post: Another Journey of Autism

  1. Sarah R. says:

    Thank you for sharing your story, Angieleigh. I agree with everything you say. It is so sad to me that autism is one of those things where you could have a room full of parents of autistic children and have some of the most heated arguments over cause and “cures”. One of my closest childhood friends has a daughter with autism and she took the “cure” route and did anything and everything to cure her daughter and finally after 4 years of little to no progress realized that there wasn’t a cure and that she just needed to love her daughter for who she was. It broke my heart to see her think that these things were working, but I couldn’t do anything and I had to let her and her husband discover what I had figured out in a matter of months with the twins.
    Just this month I had someone say to me that they had never heard a parent with autistic children with views like mine, which was a compliment from this person. I was stating that I didn’t think autism was on the rise as quickly as a lot of these news shows and commercials would have you think. I was saying that I thought it was over diagnosed, in fact we have a doctor’s center hear that pretty much diagnosis every child that walks through its doors with some sort of spectrum disorder, I also think a lot of people who would be diagnosed with autism now were not diagnosed in the past with it , but were thought either mentally disabled or socially awkward.

    Anyway, we are starting to have more sleep issues here at my house but my boys will not take medicine without a huge fight. People keep suggesting melatonin but I don’t know how I would get them to take it. My one son, Jonathan, sounds a lot like your son with his rages and me being the only one who can calm him down. He also tries to leave the house when he gets upset about things. He isn’t quite taller than me, but in the next year or so I am sure he will get there.

    Sorry to write so much. Thank you again for sharing your story.

    • Sarah, they make a liquid Melatonin that you can slip into an evening drink that they won’t taste. My nephew has had to take it for about four years now {he’s six!} and has never turned down his sippy cup as it’s tasteless. Check with your doctor to be sure it’s something the twins can take, but PLEASE do NOT let them recommend Chloral Hydrate. Not only does it taste like rusted metal, the kids will be traumatized by it. There is no masking it and it’s just gross. AJ took Seroquel for about two years, but it made him a zombie and he would sleep sixteen hours a day. I take 25mg for my insomnia and that’s about all I can stand, 50 makes me an absolute zombie and I sleep 14 hours a day.

      Are they in counseling? I have found that a rigid school schedule {we tried to implement home schedules but AJ just refused and I got tired after a month of trying} and counseling by a pediatric or developmental counselor//psychologist really helped AJ.

      I hope your son’s rages never get as far as him having to be put in a mental hospital for observation and treatment. We had to do that when AJ tried to kill me and threw a sneaker at my head. I had handled years of abuse from him, but that night I had enough and he was signed into the hospital by his doctor and had to stay almost three weeks.

  2. Judy DV says:

    Thanks, Rose. This was so enlightening.

  3. Beth Haney says:

    Love the post! I have an autistic son and I wouldn’t change him either. He is who he is, an intelligent, loving, caring boy who just wants to be happy and understood. Thanks for sharing!

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