First, let me profess that I have the best support group. I quickly realized that I am not alone when bad days occur. I feel blessed to be surrounded by so many amazing moms, who offer me guidance, courage, advice, resources and ideas.
I am sharing this morning to uphold my promise to Cody and share our journey to hope better educate others on autism. As you will read, it does not always come with a look and can be mistaken as just bad parenting or just a misbehaved child.
Before I share, do you know what Sensory Processing Disorder or SPD is? It is a condition in which the brain has trouble organizing information from the senses. Children with sensory processing issues can be oversensitive to sights, sounds, textures, flavors, smells and other sensory input. Here are examples of what some people with SPD describe what it feels like.
We had a fun family evening planned at Hawaiian Falls that a church so generously was hosting for special-needs. They literally rented the entire part out for an event that was closed to the public.
After 30 minutes of pulling ever trick out of the hat, we had to leave.
Reflecting after getting home, I was struggling on what we may try differently next time. While in the moment it’s tough even when you can read your child’s behaviors and what may work at home may not work in a different environment.
At the park, they required us to put on three wristbands. One for access after hours, second for food and third for unlimited drinks.
Putting 3 wrist bands on him was the trigger that started his meltdown…. The sensory input was just way too much and not one you practice in ABA or OT therapy since you don’t typically wear bands daily much less monthly.
So we quickly tried his ankle and then I even tried to tie them to his bathing suit drawstrings in a double knot and at that point nothing was going to be ok so I tied them on me knowing I would always be close by. At that point it was just too late.
I could tell his big brother was sad driving home as you could see on his face where he felt helpless. He hates seeing his brother this way especially since it does not happen that often. He at first tried to take blame for Cody’s meltdown because he thought is was because he was following Cody’s lead and a bucket of water fell on top of them in the splash pad. I quickly reminded Cameron,what triggered his crying. Those 3 bright neon bracelets that may have felt like thorns at the time. He offered him comfort driving home by providing some pressure on top of his legs with his arm draped over them. This pressure helps Cody calm in these situations. We have learned less words are better, so we would quietly ask him to take deep breathes but mostly unspoken support seems to work right now for us.
I question what I could have done different? Truthfully, I don’t think anything. With Cody only being 5 yrs old, we constantly are trying new things and learning sensory inputs that are too much or not enough. Sometimes we learn as we try new things not knowing the outcome but we have to try. Keep in mind too, we had been to this water park before and he loved it! You just never know as each day is truly a different experience.
One Mom was watching his meltdown and she said to me, “I think it’s been a long day and he’s just had too much sun…. “ I told her, “Actually ma’am, we just walked into the park for a private event and the sensory is just too much right now. He has autism.” I didn’t have time to educate her which is was I normally would have done but I sure hope her curiosity stuck with her and she went home and googled autism symptoms. I will never forget what I didn’t know either before Cody was born and if I can raise awareness and acceptance, I will do in most every opportunity I get.
So why share the not so good times too?
- Because I felt sad and needed to write to get off my chest.
- To share with others that autism can be confusing.
- Support other parents that may experience the same things we do.
Today is a new day. We will try new things again. We will never stop trying actually.
As Temple Grandin mentioned in a lecture I once saw, Always give a loving push to try new things and offer encouragement along the way. We need to never forget that one day our children will not have us. Offer a gently nudge for self-independence in all your opportunities especially if you have a child like Cody where everything has to be taught and does not come natural.
Note to self: That even means taking the extra time allowing him to put on his own socks.
I guess I need to get some wristbands on Amazon soon? Or pin these bands to his hat next time?
I did capture one family photo in the parking lot before we entered the park.