I don’t need to be solved, instead teach me to soar!
Today I want to talk about why I didn’t choose a puzzle piece for my logo. GASP!
I think at the beginning of your autism journey the puzzle piece is representative for how you feel. For many individuals and families, when you start your autism journey, you feel overwhelmed and confused. You want answers and a puzzle piece sums that up. There is so much to learn, too many forms to fill out, and worry for the future can consume you. You sign up for the newsletters, join the Facebook groups, and try to keep up with all the new demands that an autism diagnosis brings. But life still goes on. If your a caregiver, you’re probably working a job, have other children or aging parents, other outside commitments - like your faith community, and now you need to figure out how to add yet another thing to the to-do list. So if you take nothing else away from this post/website, know this about your autism journey….
IT’S A MARATHON, NOT A SPRINT!
I wish I had learned this a bit sooner in my son’s autism journey than I did. Yes, therapy is important. Yes, filling out the forms is important. Yes, learning all you can about autism and how to help your child is important. But if you don’t take care of yourself first, you are setting yourself up for failure, and that’s not helping anyone! First, figure out what your priorities are for your loved one with autism. Know this list is going to be different for everyone for a lot of reasons- age of the caregiver, age of the individual with autism, where you live, the behavior issues that need address- the list goes on and on. Next, once you figure out what you need to do, then work on those things in a strategic way. For me the easy stuff was the forms! Get them done and out the way. Most of the time the forms are related to things that take weeks, months or years to get implemented. If you get the forms out of the way, then good things will happen in the future sooner rather than later.
But sometimes we bogged down in the everyday problems and never get around to doing anything that actually affects the future outcomes for those with autism. Let’s say you have a male child that’s 4 years old just newly diagnosed. You may be having challenges with A LOT of different behaviors, but always keep you future goals in mind. The longer you choose to not work on toilet training, the more ingrained the idea becomes to soil a pull up for that child. Do you really want to be changing the diaper of an 11 year old? If you choose to let your child run around in their underwear at 3, what does that look like at 13, 23, or 53? Sometimes, the battle is more easily won, when you decide to take it on sooner rather than later. Ask trusted professionals, perhaps even My Autism Ally, for advice on how to address the behavior. Then work towards replacing the behavior with a more socially appropriate one, and then move on to the next one! Keep in mind replacing behaviors are only going to be successful if EVERYONE who is caring for the child is on board and doing the same thing. If Grandma who is watching Johnny all day is letting him run around in his underwear, don’t expect him to change his behavior at home. Pick one behavior at a time. Trying to change too many behaviors at one is not only frustrating for the child, but exhausting for the family as well.
If employment is a goal remember it’s not just the ability to do the work required, but also all the interpersonal skills related to employment that are important. Are there concerns about personal hygiene that need addressed? Do they have appropriate communication skills? Transportation- are they driving? There are a lot of mini goals that need to be achieved in order to be successful, and these skills don’t come naturally- they have to be taught one small step at a time. If all you are focusing on is school work, you might be missing the larger picture. My son was in elementary school when I realized that the key for him to be successful in life wasn’t tied to how well he did in school, but how successful we were working on the skills that school doesn’t teach. It wasn’t going to matter if my son knew how to do algebra, but it’s definitely going to matter if he doesn’t learn how to stop and not run over an elderly woman who walks in front of him while he’s pushing his book cart at the library.
For me a butterfly is more representative of the autism journey. Have you ever watched a butterfly in flight? They fly slowly from flower to flower and from our perspective, in a completely random way. They zig-zag in different directions. They fly high and then fall low, but they are always focused on their end goal. That’s my hope for all of you. Keep the end goal in sight. For me that was making my son the most independent adult that he can possibly be. And it’s okay if along the way you have to make adjustments to that goal and what it looks like. That’s what happened to me. But as long as we are taking small steps every day towards that future goal, we’re giving them the keys to success.
Let’s help them soar together!