I’ve never kept it a secret from my daughter that she has Autism. When she cried because “her brain doesn’t work the way she wants it to” sometimes; when she started to notice that some things are easier for her sisters and cousins and friends than for her; when she started to notice that her little sister was taking on a care-taking role with her very early on and was reaching many milestones at the same time or earlier; when she noticed that not all of the children in her classes required pull out time or a paraprofessional (she prefers the term teacher’s aid)… I didn’t hide the reason why. Even from a young age she was begging me for answers; even when she had trouble formulating sentences, she needed to know why.
I have always presented it in a very positive way for her in spite of her difficulties. I have explained why there are certain foods she shouldn’t have (it’s easier for her to think and concentrate and makes her feelings feel better). I have explained that her Autism helps her think differently and creatively, and that there are very wonderful ways of thinking and very wonderful ideas that she has that I never would have imagined because my brain is “only typical” compared to hers. I let her watch the movie Temple Grandin. She connected with it.
We have more good days than bad, lately, but I think it’s because I don’t hyperfocus on what she can’t do anymore. I fully accept her Autism, which means I accept HER. She used to tell me that she hated her brain and her Autism and wanted to be just like her sisters and friends but now? She wants to be herself. I saw her the night before school at the school picnic and a gaggle of her classmates came in. This huge group of 5th grade girls saw Gracie and they all squealed, “GRACIE! YOU’RE HERE!” She smiled and waved and said hi to them in her sweet, gentle way and I couldn’t help but get teary eyed. The girls surrounded her and they all took turns asking her permission for a hug, telling her they missed her. She actually gave them all permission for hugs. She was in her glory.
Oh fluff, I’m crying right now retelling that story.
Don’t get wrong here. We have some really bad moments. Thankfully some of the “bad” times are just momentary and I’m thankful. She’s having an easier time lately getting herself under control. I think it scares her when she can’t control it. We have bad half days. We have bad days. Weeks. Months. But my darling girl… she accepts herself and knowing what’s going on in her own brain helps her self-correct. She knows to accept help when I offer… and I know to back off if she refuses. She has learned to figure out her own warning signs and ask for help in holding them off. She asks to help satisfy her sensory diet. I was never sure she would get to that point.
She is accepting of herself, and realizes that her Autism is part of what makes her such a special young lady. Being autistic is just like saying her hair is blonde, her eyes are blue, she loves strawberries, and she’s lactose intolerant. If only others were so accepting and unafraid. When the majority of autistics are not severe, when the spectrum is so wide that the majority isn’t even noticeable enough to require diagnosis, I wonder why so many are fearful and hateful and choose to remain uneducated.
I see her and other children she’s grown up around in school that have Autism and I see little people. Future artists and engineers and technicians and actors. I see the gift that they are. I don’t see brain injuries nor a disease because they’re not injured or diseased. They are gifts. They are treasures. They have a disorder because they think differently in a world where most people don’t think the same way they do. Oh well. We can’t make the world change for them, but we can’t expect them to change for the world either. Instead, I choose to prepare my daughter to cope with that world without having to change who she is.
It took me a long, long time to view my daughter’s Classic Autism, high functioning as it may be for her (and let’s face it, our family unit), as a gift. It was difficult to see an end to the days that were endless struggles over everything. I mean… everything. When she didn’t know what was wrong and I didn’t know how to fix it. Then I stopped looking for “why” it happened and I stopped asking God. His answer to me was, “Why not.” I had to be the mother she needs, and not the mother I wanted to be. I’m a control freak and I had to let go. I had to accept that things can be untidy and still turn out all right. I had to trust in “not knowing” and even though I still worry and control what I can, it’s getting a little easier to let go.
Let go and let God. But also, let Gracie.
And then today, I stumbled on this and it made me cry. A young woman attending college and happens to have Autism.
My name is Shaina Barnett. I am 22 years old and a student at a community college in my area with high-functioning autism. I was diagnosed when I was only a toddler, in 1994. The funny thing was, I wasn’t truly aware of being different until I started asking myself why I could not somehow click into the crowd of kids in my classes. I was about 8 years old or so when my mother gave me the talk of autism. She said it was a gift I was given from God and with it, if used correctly, I can do wonders, move mountains, maybe even change the world. Of course, at the time I did not believe her. I just wanted to be able to play with the other children and share their experiences without being ridiculed or told of my faults. Middle school was such a nightmare. Other students knew I was different, but they used it as a weapon to break me. They pulled cruel pranks on me and called me hurtful names. Being a teenager at the time is hard enough, even without having autism. My safe haven was drawing comics, writing stories and poetry, and singing. Years went by and I felt I began to grow and blossom into a young lady. But I could not have done it without my high school mentor who was also my beloved homeroom teacher. We still remain very close. Being in and out of social skills programs gave me tools to be able to talk among my peers, however, I advanced past the expected curriculum. When I attended a Jewish summer camp, it greatly build my self-esteem and helped me grow to be the adult I am. I’m proud to have such positive experiences. I thank my superhero of a mom for being my support and my rock. She was right all along. I don’t think of my autism as a curse; if anything, it is my superpower, a power that not even DC Comics or Stan Lee could come up with. I have been BLESSED.Shaina Barnett
Van Nuys, CA
- A Chat with Temple Grandin and Richard Panek about “The Autistic Brain” (blogs.scientificamerican.com)
- Perspectives. we are NOT one big “autism family”. Still… (suburp.wordpress.com)
- What Are The The Symptoms Of Autism? (childrenwithautismintheworld.wordpress.com)
- Is There a Cure for Autism? (autismtests.wordpress.com)