My checklist for raising my teenager with autism

This is a post by J-Jaye H., proud mother to Jackson and Reese.  Jackson was diagnosed at age 2 with severe ASD, in addition to numerous other medical conditions over the years.  For the past 10 years, J-Jaye has served as Autism Speaks Southeast regional Autism Response Team Associate.

When my adorable toddler, Jackson, was diagnosed with autism at the age of 2, I couldn’t really see past the immediate future.  I was laser focused on getting him talking, starting early intervention, finding insurance to pay for his ABA therapy, & navigating the IEP process.  These were on the initial diagnosis checklist given to us from the developmental pediatrician following his diagnosis.  So, we did all the things, and I mean ALL the things.  Today, almost 14 years after his initial diagnosis, I can look back and know my family did everything and is still doing everything possible to help Jackson be the best Jackson he can become. But time flies. How did my adorable toddler turn into a stinky teenage boy so quickly?! Where is my new checklist?

Jackson (AKA the “TeenBean”) has since been diagnosed with severe intellectual disorder and profound autism, in addition to a myriad of other comorbid diagnoses that often accompany autism – including epilepsy & sleep disorder.  At almost 16, he remains completely nonverbal (relies on an AAC device for communication) and needs assistance with all of his ADL’s (activities of daily living), is in a self-contained classroom and requires constant supervision for safety.  I looked back recently on that initial checklist and realized I needed a new one now that he is a teen in high school.  I am not talking about employment or post-secondary transition resources (and if you need those, please click our website).   I am talking about the unspoken items a checklist for teens like Jackson would need – so here are some of the things we have learned over the last years. 

Jackson is unable to tie his shoes - as a child, we easily found cute Velcro shoes for him.  Once he got into a men’s size, the “cool shoes” weren’t as easy to find. We luckily found some new adult shoes that are really comfy slip-on sneakers – fashion meets function.  Since we found a pair he likes AND can put on by himself, we bought 4 additional pairs of the same shoe in the next 4 sizes up!  (We autism mamas know to plan ahead)!  The same thing happened with blue jeans.  Once you get into a men’s size pant, it seemed that companies no longer make fully elastic waist jeans, which is a must for Jackson.  He is only able to push down/pull up his pants.  Thanks to the “local FB MomHive”, I learned we don’t need jeans anymore.  All the high school kids now wear joggers which are easily pulled up and pushed down.  I wish I had known about joggers after 2 weeks of searching online for elastic waist jeans for a teen. By the way, these joggers are easily found at your local Kohls or Old Navy!

Then there is the topic of hygiene since puberty hit 2 years ago.  My husband now has to shave his moustache weekly.  We tried an electric razor, but he didn’t like the buzzing sensation due to his sensory issues.  Another mom shared that Gillette makes a razor specifically designed to shave someone else -- and it worked perfectly for Jackson – and Dad!  We also had to trial several brands and types of deodorant to land on one he would tolerate.  (He ended up liking a spray with a light smell, if you are curious.).

We also have always had to lock up all of our doors and cabinets, so he can’t access things like window cleaner, shampoos & medicines. For years, we have been fine with our locks being at the top of the door. Since his puberty growth spurt, we have had to get creative – which includes switching over to keypad locks & locks with keys since he can now reach the top of the doors.

I know we know that autism treatments are expensive – but check out my son’s monthly grocery bill! In addition to being a teenage boy, he now takes medicine that causes a significant appetite increase.  This class of meds is often added during the teen years for behaviors.  It works very well for him, but it astounds me how much food he can put away.  We definitely have to monitor his intake closely for his health – and my wallet.

One other thing I didn’t think about when he was younger is public bathroom safety.  For years, I took him in the ladies’ restroom with me as most moms do with their little toddler boys.   Now that he is taller than me, I tend to select stores that offer family bathrooms, as many people don’t want a handsome teen boy coming in the ladies room.  While Jackson has been toilet trained since age 4, he still requires supervision and assistance.  This is something constantly worked on with his male ABA providers during community trips and male parapro at school.  In the interim, we will keep looking for those family restrooms during our outings and working toward independence. 

Speaking of using the restroom – due to his sleep disorder, he takes medicine to help him sleep which requires him to wear adult sized pull up briefs at night, as he doesn’t always wake up to use the restroom. Not only does this result in copious amounts of bedding laundry, but the pull ups are not cheap.  Luckily, they are covered by his Medicaid waiver, so I just have to pay for the detergent. I encourage you to see if incontinence products are covered in your state.

So there it is - my updated “TeenBean” checklist of tidbits and ideas that have worked for us – or we are working on!  I know many of you have a Jackson in your life, and I am glad I was given the opportunity to share him with you.   Now, if you know how to help me reduce my daily laundry amount, you know where to find me!

For more information and resources on the journey to adulthood, check out our Transition Tool Kit and Roadmap to Housing and Residential Supports for Autistic Adults.