I asked Patch what I should write as our first topic after our introductory blog, and he replied, “About autism, of course.” It is pretty fitting, since April has been designated Autism Awareness month, so this is where we’ll start.
First of all, I must say that “Autism Awareness Month” should be changed to “Autism Acceptance Month” because the world can be well aware of our children, but until they fully accept our children and loved ones with ASD, real progress will not be made.
Having a child with autism can be quite isolating. Watching all of your friends’ neurotypical kids grow and make friends, become involved in sports, make A-honor roll, participate in sleepovers, have boyfriends and girlfriends, start driving– while we sit here hoping Patrick will learn to tie his shoes properly and make one real friend– can be painful. We have been blessed to find the Center for ASD in Crowley, Texas, which I would recommend to local families. (https://www.centerforasd.org). This is a place where Patrick feels he belongs, and where we have found the understanding and support of other parents of children with special needs. I also highly recommend Hope Center for Autism in Fort Worth (https://www.hopecenter4autism.com). Patch participated in ABA therapy here, and made impressive progress over 2 years’ time. The director and therapists here are wonderful.
As soon as you suspect autism spectrum disorder, you should reach out to an organization like these near you because I know it can feel like you are facing it all alone and that no one understands what you are going through. I hope many of you will use this blog as a forum for both finding resources for autism and for sharing your own resources you have found to be helpful.
One of the biggest difficulties with ASD is that each individual on the spectrum is so very different. The rate of diagnosis is so high now– 1 in 59 children (www.cdc.gov)– that it seems that everyone knows someone affected by it. And they all have preconceived notions of what autism looks like. After being raised with a sister diagnosed with ASD, raising a child with autism who is now 14, and working in special education and ABA therapy for several years, I have learned to ignore most of what people say and listen to each individual with autism and learn about the unique challenges they are facing and behaviors they are exhibiting.
What does autism look like in your home? In ours it is lots of fidgeting and chewing, sensitivities to smells and a very limited diet of accepted foods, poor motor skills, poor social skills and difficulty making real friends (though he is the most outgoing and welcoming kid you’ll meet), difficulty maintaining eye contact, hugs and affection only on his terms, and obsession and perseveration on his favorite topics (weather and storms, and of course video games). He is very good at being an advocate for himself and explaining to people when his autism makes him act, think, or feel a certain way, but we have to be careful that he doesn’t use his diagnosis as an excuse for every negative behavior or poor choice he makes. Do any of you find that your loved ones use their ASD as a crutch or an excuse at times?
For me, it is not the autism itself that is the most difficult part, but people’s misunderstanding of it. Patch is extremely sweet and for the most part, very well-behaved, but when he is not handling a new or different situation well or something is not going just as he feels it should, his behavior cam come off as bratty to some. So many relationships end over how to handle the child’s behaviors, when all that is needed is an open mind and more education. Please help me spread not only autism awareness, but autism education to the public.
PatchWorks Parenting 