By Darcel White of The Mahogany Way
I never thought I would be the parent of a child on the spectrum.
All of that changed in April, 2013, and I don’t think it was a coincidence that our Autism diagnosis came in the same month as Autism Awareness.
I know they are doing away with the word Aspergers, but I’m going to keep using it because it lets people know right away that my daughter is at the high-functioning end of the spectrum. I can’t speak for people who have children that are non-verbal, and each child on the spectrum is unique, so I won’t try to speak for all parents of children with Aspergers. All I can do is share my personal experiences with my daughter.
I’ve always known there was something different about my oldest daughter, but I could never put my finger on what that something was.
I noticed these things early on, around the age of one. She cried loud and hard when we sang happy birthday to her at her first birthday party. I did invite 30 of my friends from church and they came with their children, so there were a lot of people. When she was three she had a major meltdown in the mall because she took her shoes off and couldn’t decide if she wanted them on or off. I noticed she always had trouble with crowds, loud noises, bright lights, sleeping, taking a while to process what was being asked of her.
I picked up the book Raising Your Spirited Child because she was not your typical three year old. That book was a real eye opener and it was the first time I heard of Sensory Processing Disorder. That explained why she didn’t like the movie theater, her socks had to be perfectly lined up across her toes, and why I had to cut the tags out of her clothing.
I learned early on to give her a run down of what to expect, especially when going to new places. That helped put her mind at ease and gave her an idea of what to expect. I still do this for her now, and I’ll also rephrase my questions to her or wait for her to process and respond…sometimes both.
I want to take a moment to clarify something: Not every child that has SPD (sensory processing disorder) is on the spectrum, but every child on the spectrum has some level of SPD.
Getting the Autism diagnosis has been a blessing!
I’m not saying my heart didn’t sink a little when I heard the Doctor say “Your daughter does not have ADHD, she has Aspergers.”
It was and at times still is scary, but I’m also very relieved. We have a name and concrete reasons for why she does the things she does. Now I know it wasn’t all in my head, and that I wasn’t ‘searching for something to be wrong with my child’ like some people tried to tell me I was.
There are times where I get so frustrated with her because she has trouble getting her clothes on, but she has no trouble with the hand and eye coordination it takes to play video games. Then there are the times where she wants to wear the same outfit for an entire week, and I need to explain to her why that is not ok and I need to wash it. Then sometimes I will wash that outfit over and over just so she can wear it, or maybe part of it so she can switch it up with her other clothes, or I will find her something similar to what she wants to keep wearing and we reach a compromise. It’s all about comfort to her.
The book 1001 Great Ideas For Teaching and Raising Children with Autism or Aspergers is a fantastic resource. I love the way the authors focus on accepting the whole child, and they give great ideas for sensory play. The books helped me to better understand how my daughters mind works.
Let me tell you about the sleep issue. My daughter does not need a lot of sleep. It doesn’t matter if she sleeps for 2hrs or 10hrs she will be the same high energy child she’s always been. …there are days and weeks where she will fall asleep and then 2-4hrs later she’s up, telling me she can’t sleep.
There are nights where she’s up until at least 3am. Then there’s the time where she was up for over 24hrs last year. Her Pediatrician and Spectrum Disorder Psychologists have recommended melatonin, and it does help her get to sleep, but there are also times where it doesn’t help.
Coffee has become my new best friend!
I have learned that you cannot be the parent of a child on the spectrum and be soft spoken. You need to have Mama Bear ready at all times – because there are people who do not understand Autism. They will tell you that it’s your parenting, that your child needs to learn to work around you, or that Autism doesn’t exist. You will learn to advocate for your child, and you will find this strength about yourself that you didn’t even know you had.
You will be tired, you will be challenged, but you will also develop a deeper love and respect for your child.
I do not think of Aspergers as this terrible disability. I do not think of my daughter as something that needs to be fixed and molded to fit into society.
I think society needs to accept her for who and how she is – and that is beautifully and wonderfully made.
Darcel White is the author of The Mahogany Way