3 things that have made me a better autism parent

Geege Taylor is an author and an autism advocate who is passionate about challenging the negative perceptions of those living with disabilities. 

3 New Year resolutions that made me a better autism parent

These aren’t your typical “I’m going to stop drinking so many Coke’s” or “I’m going to start to flossing more” kind of resolutions. I hope that they will bring you peace and happiness throughout the new year!

1. Resolve to no longer care about what others think

Before having my son, Ainsworth, I wasn’t used to being stared at in public. After Ainsworth, I felt like I was in the spotlight 24/7, with strangers fixated on my son’s crazy display of flapping his hands, yelling “Ehhhhhh!”, and swimming around on the floor. After a few years of this, I asked a therapist about finding some ways to cope in public. Her suggestion was that I tape a sign on Ainsworth’s back that read: “Please have patience as I’m dealing with someone on the autism spectrum.” Wasn’t it challenging enough dealing with these behaviors? Now I was supposed to attract even more attention with this weird sign?

It made me angry to think that random people might feel that they deserved an explanation about my son. If this was the wave of the future, then I should be allowed to attach signs to stranger’s backs trying to explain things such as: “Excuse me, but I am wearing a God awful outfit and I really should have taken a bath today.” We don’t always have to understand everything and everyone around us. What we should understand is human kindness and that it is not polite to stare at people.

The therapist’s advice left me with a different perspective. Haters are gonna hate, so I made the deliberate decision to no longer care about what some stranger (whom I will never see again) thinks about my child’s behavior. Free yourself from the judgement of others...that’s a shift that you don’t need to work! This actually rings true in all areas of life.

Stress, anxiety, and depression are caused when we are living to please others.

- Paulo Coelho

2. Resolve to stop wearing 100 hats to utilize your strengths and delegate your weaknesses

Most of us autism parents are not Special Education teachers or therapists. We did not chose this path; it was chosen for us. (Here I must add a “Thank God”, as it has been the best thing that has ever happened to me.) While trying to educate myself on everything to do with autism, I quickly deduced that I would be a horrible therapist, as I love to spoil everyone around me. So, instead of driving myself insane trying to do a million discrete trials a day with Ainsworth, I used my organizational skills and coordinated a team to help me. Anything that I sucked at was delegated to someone else.

I started by advocating for Ains within the school system and made sure that he was getting the best programming possible. I fought for him to have his own personal aide at school. I applied for a Medicaid waiver that paid for all of his therapies. I got him involved with the research clinic at our state’s university. I found a great psychiatrist who prescribed medications to help him sleep. And last but not least, I hired weekend daytime babysitters so that I could take care of myself. I’m sure you parents know what I’m talking about here...I don’t need a Saturday night sitter so that I can go to a five diamond restaurant; I need to take care of basics, like bathing and cleaning colossal messes.

I’m always trying to think of ways to advocate for my son. Just the other day, I had the random idea that Ainsworth ought to have his own school-provided laptop like the rest of the kids do. Just because he can’t type doesn’t mean that he should be excluded from such a great resource. Twenty-four hours later a laptop was sent home in his backpack, and he was able to watch sensory videos that night which lulled him to sleep...and all because I simply bothered to ask!

It has taken a good bit of time, trial and error, research, and sometimes begging to make things happen for my son...and it will be an ongoing effort throughout Ainsworth’s life...but the juice is definitely worth the squeeze!

Just do the best that you can-- the rest is in God’s hands.

- Ainsworth's Great Uncle Jim

3. Resolve to find gratitude and acceptance

I cracked open a fortune cookie at a really gross Chinese buffet one day that read: “Acceptance is the key to happiness.” I never expected to find such clarity at The Peking Dragon. If you are in denial, get out of it; it’s only hurting your child. I know life didn’t ask you what you wanted, but your child needs services for the best possible outcome, and burying your head in the sand is only wasting precious time. As crazy as it sounds, my life has been made a million times better by autism. It certainly hasn’t always been easy, but my “typical” child isn’t always easy either. (Sorry Harper!)

I once read a research article that stated “the happiest people in the world are the ones who focus on what is right in their worlds, instead of what’s going wrong.” This philosophy absolutely resonated with me. I practice this in every area in my life, but it’s particularly helpful when dealing with challenges that autism can present.

For example, every single day I have to wash all of Ainsworth’s bedding: comforter, mattress pad, sheets, pee pads...the whole lot (and this kid even wears a Depends at night AND takes a pill to help stop urination!) I could be depressed over things like this but I choose to see it differently. Somewhere out there is a person whose job is to wash soiled linens at a hospital, all day, everyday. And they are dealing with the wet bedding of total strangers. I choose to be grateful that I only have to deal with one wet bed a day instead of 25...so what could be perceived as a nightmare, has now become something that I am actually grateful for.

When you see the glass as half-full, you live a happier, more productive life. And I never want my son to feel like he’s a burden or that I’m depressed because he’s not doing things the “normal” way. I’d rather have this sweet child who pees in the bed every night than some potty-trained jerk...focus on what your loved one’s disability brings to your life instead of what it takes away. It will bring out the best in you and make your child feel loved and confident.

Gratitude is one of the sweet shortcuts to finding peace of mind and happiness inside. No matter what is going on outside of us, there’s always something we could be grateful for. 

- Barry Neil Kaufman