April is Autism Awareness Month. Since the diagnosis last November, the phrase we hear most often is: Let us know if there’s anything we can do to help. I realize that for most people, this is usually just part of the script. It’s what we’ve been taught to say when we hear bad news. It’s what we think we should say, even if we aren’t sure we actually mean it. Offering help and actually helping are two very different things, but we pass no judgment on those who have said these words to us. We know it comes from a good place. There isn’t a Hallmark greeting card that would adequately convey the perfect response to an Autism diagnosis. With April 1st around the corner, Juan and I sat down to create a list of things you could do to help if the offer still stands.
- Wear blue on Tuesday, April 2nd, this is officially known as Autism Awareness Day. Post your picture on social media and use the #AutismAwareness #SignedWithLove #AcrossTheSpectrum for us to see.
- Follow the legislative decisions in Texas this session and when a call to action is announced, please act! Recently SB 500 was unanimously passed in the House. This bill would require that ABA therapy be covered under Texas Medicaid, which today it is not. The bill will move on to the Senate next. We are watching this as closely as possible as it affects thousands of our most vulnerable families in Texas.
- Exercise grace and empathy. Next time you’re out with your family and you witness a child throwing himself on the floor, talking extremely loud or invading your personal space don’t jump to conclusions that this was caused by bad parenting. I think often about a mom we saw at a movie theater during a family outing during Thanksgiving break. As a small crowd waited to enter the theater, she made sure to explain to the strangers around her that her teenage son had Autism. She wasn’t sure they would last the entire time, the nervousness in her eyes said it all: “Excuse my son with Autism. I’m doing the best I can.” It was hard for me to watch because we were anticipating the diagnosis of our little Jacob. I wondered if that would be me one day. Would I be brave enough to escort my son out in public despite the stares, comments and faces of strangers who instantly pass judgment? As far as I could tell, the strangers outside the theater did their best to assure this mom that everything would be ok. Less than an hour later, the apologetic mom and her teenage son left the movie theater. They might not have made the entire movie, but she was certainly brave to try.
- Understand that Autism is a spectrum. Children with autism don’t look or act one certain way. Some speak non-stop, while others remain non-verbal their entire lives. Some can run, jump and swing with their peers on the playground, while others will never have that opportunity. Many children with Autism also have other challenges they face, with up to 75 percent diagnosed with other conditions: anxiety, ADHD, Intellectual Disability, depression, gastrointestinal problems, OCD, seizures, epilepsy, developmental and motor delays – the list goes on. Those on the spectrum aren’t all like Dustin Hoffman’s character in Rain Man.
- Pray for us. Pray for us as much as you can. We believe whole-heartedly in the power of prayer. Add us to your personal prayer list. Add us to your life group prayer list or bible study prayer list. Pray for our doctors. Pray for our family. Pray for Jacob.
As people proudly wave their puzzle-pieced logo beginning on Monday, also recognize that each family’s journey with Autism is different. Vaccinations, special-education programming, ABA therapy, Autism recovery, Biomedical treatment, medication and parenting are all topics that people within the Autism community don’t see eye to eye about. Remember those online support groups I mentioned in a previous blog post? Well, sometimes they’re not supportive. Instead they can be a forum from which to put others down, criticize strangers, attack vulnerable parents and add more stress to the life of a person already stressed out; I’ve seen it. I believe that most parents are truly just doing the best that they can. I believe that especially to be true with those raising children with special needs. So, this April let’s just be extra nice, extra patient and extra kind.
Signed with love, Kat.