This is a post by autism mom and Autism Response Team Coordinator J-Jaye Hurley.
From the outside, my house may look similar to many of your homes. However, if you take a closer look, the inside of my house probably looks very different than yours – and I don’t just mean the décor! My son, Jackson, age 9, is severely affected by Autism Spectrum Disorders (ASD) and other medical conditions. Because of this, we have had to make many adjustments in how we live our day to day life.
Come in and take a sneak peek inside the Hurley Home over on ASD Boulevard!
1. WE OFTEN HAVE OTHER PEOPLE IN OUR HOME:
Jackson has been working with a wonderful team of ABA behavioral therapists for several years, whom we now consider part of our extended family. We have therapists in our house 5-7 days a week. At first, I used to clean the house up, put on makeup and make sure everything was just “so” whenever they would come over. Now I will open the door to them in my pajamas with laundry piles all over the floor. Having a team of therapists in your house daily may seem odd to some people, but we couldn’t be happier each day to see their smiling faces, especially on his more challenging days.
2. WE SWAPPED OUR BEDROOMS:
For years, Jackson would come and get in bed with us during the night. We tried different interventions, yet he still wanted to sleep in our room. However, we finally realized it wasn’t US he wanted to sleep with – it was the master bedroom itself. So we gave up our master bedroom to King Jackson, and my husband and I now sleep in his bedroom. (We do have a king size bed now in both rooms, but the grown-ups sleep in the room with Dr. Seuss wall clings!)
3. A DIFFERENT TYPE OF HOLIDAY
Prior to our life with Jackson, we used to decorate every inch of our house for all the holidays, especially for Christmas. Unfortunately, we are no longer able to do that. Jackson likes to stim on objects and will pick up and “tap” anything that isn’t nailed down, including decorations. We are unable to put out holiday figurines or decorations because they inevitably are broken, it takes him several days to open presents and we take lots of drives to look at the lights. We celebrate the holidays in our own way! The past 2 years we have only been able to put lights and garland on our trees, as he likes to give them “hugs” and pull them down on top of him. Needless to say, no ornaments on the trees anymore unless they are the paper kind! (Or this year, he decided to decorate with the Kraft kind!)
4. WHAT REALLY HAPPENED TO OUR WASHING MACHINE:
Jackson is a deep pressure sensory seeker and will try and get into all kinds of places he shouldn’t, including our laundry room. We recently wondered why our washing machine kept going “off track” and breaking until one day we found him and his pillow sitting inside the machine! He also likes to open our dryer and pull out our laundry mid-cycle to try and find a warm towel or blanket, leaving the rest of the clean clothes in a trail on the floor. Which leads me to…
5. WE HAVE THE HIGHEST WATER BILL. EVER:
Everyone thinks they do a lot of laundry but we do more. I promise you. Jackson is incontinent at night and we have yet to find a pull-up product that works for him, so we have to wash his sheets, mattress pads, and comforter every morning. Like many kiddos with autism, he is obsessed with water and wants to take 3-5 baths/showers a day. Speaking of water, Jackson also doesn’t understand that he can’t take his iPad or portable DVD player in the shower.
To him, that is combining 2 of his favorite things – watching Sesame Street in a bath tub! Over the years, we have had more electronics than anyone should possibly have – and have lost almost all of them to water. Most parents have to supervise their kiddos’ electronics for the content and time spent. We spend our supervision making sure the tablets don’t get wet! Jackson also likes to get naked (which makes for some interesting looks from the mailman!) SO we also have lots of towels, clothes, undies, etc. We do at least 2 loads of laundry every day but often it can be 3-5. This leads to our expensive water bill. Not only from all the laundry and baths, but in the summer, he loves to fill up buckets in the back yard, run through the sprinkler or just play in the hose. He also is an incredibly messy eater (we are constantly working on that!) so we also use more stain remover than most – hellloo Costco size bottles! So yes, we do more laundry and have a higher water bill…that I can almost guarantee!
6. OUR GARAGE ISN’T FOR COVERED PARKING:
We have a two car garage and we have two cars. Guess how many cars we park in there? Zero. Not because of storage. Not because the cars don’t’ fit. We have turned our garage into a “sensory-friendly man cave” for him. Over the years Jackson has had crash pads, bubble tubes, a sofa, swing and a mini trampoline for him to use when the weather doesn’t allow for outside play. We need our next house to have a basement so we can move this much needed “room” downstairs and we can finally park our cars inside the garage again!
7. WE HAVE HAVE SUPER NEAT COUNTERS:
Jackson likes to pick up and tap objects, so we simply can’t leave normal household items out on counters or shelves. This especially includes shampoos, cleaning products, baby wipes, lotions and soap bottles. HE LOVES THESE MOST OF ALL. If we left a soap bottle out by the sink, it would be gone and spilled in less than three minutes. He can go through a pack of baby wipes in less than five. Same with our hair spray, toothpaste, shampoo, lotion, deodorant or makeup. You get the idea. Our bathrooms look spotless because we can’t leave anything out besides towels. We lock everything up in a hall closet and use shower caddies (kind of like we were back in college dorms). We also have to use wall soap dispensers so we can wash our hands. (I did find these cute penguin ones recently so they don’t look as much like a restaurant bathroom dispenser!)
8. WE HAVE A LACK OF HOME DECOR
We basically have had to give up any type of decorating scheme (which is hard for this Southern mama) but it makes it easier for all of us in the end. We have had shelves pulled down, toilet paper dispensers tapped off the wall, plants dumped over, pictures knocked off, ceiling fans pulled down, etc. You can see in the picture of our master bedroom – there is nothing on the walls or shelves. Unfortunately, this also is what makes it truly impossible to take him over to other people’s homes. It is too hard for people to quickly “Jackson-proof” a home as he is into literally everything. In the end, my husband and I tell people we have a “modern décor” – a less is more kinda thing.
9. WE HAVE LOCKS, LOCKS, AND MORE LOCKS:
Everything in this house is on constant lock down. But those shampoos, food and soaps are just things. The biggest safety concern is Jackson himself. He has no understanding of safety or danger. He has eloped from our home several times before, and we have even had to call 911. We have an alarm system, all windows have special locks and all doors have two locks. Keys are placed above the door where he can’t get them (at this time). My husband and I follow a nightly “lockdown” protocol we put in place. He can break open the childproof locks on our inside doors so we have had to turn all of the locks inside out and use a skeleton key to get in bathrooms and closets. Our fenced in backyard used to be safe until he got tall enough to try and start climbing the fence. Our sensory garage used to be safe until he realized how to open the safety lid on the lock and open it as well. Our almost 10-year-old son truly requires 24/7 supervision and I cannot begin to tell you how much stress this can be for an autism family who has an eloper. Keeping our home safe for him is my greatest fear and challenge.
10. CHEF JACKSON IS ONE OF A KIND
Jackson’s favorite room in the house is our kitchen. He loves to be a part of it all – eating, cooking and even socializing. Of course we have locks on the fridge and pantry, but that barely slows him down when it comes to food. Because he is nonverbal, Jackson uses an augmentative communication device (AAC tablet) to express himself. He will often hit the button to ask for “Sour Cream and Onion Stax please” over and over and over again – it’s his absolute favorite! He recently started having to smell (or sometimes lick – ewwww I know!) all foods which in turn have him sticking his nose literally in all of our meals. I tell guests to be prepared to share if you are eating in my house. (He recently thieved my dad’s bowl of Hot and Sour soup which is a food he had never even tried before!). He also gets impatient and will take matters into his own hands if we aren’t cooking the food fast enough. Some days I find a bag of chips in our bathroom or a can of refried beans in the bedroom because that’s how we roll in the Hurley house!
I really could go on and on about our differences but in the end, I know my house has the most important similarities to your house: We all want to keep our homes and our children safe, and keep those homes filled with love and laughter. Jackson has the best smile and biggest heart of anyone I have ever known. So come on over to our house on ASD Boulevard for a visit sometime – but consider yourself “warned”! I might put you to work doing laundry or you may see a half dressed boy streaking on by!
Resources For You!
- For resources on Sensory Tools and Safety Products, please review our online Resource Library.
- For information on the Big Red Safety Boxes and our Swimming and Water Safety Scholarship fund, please review our Wandering Prevention and Safety resources.
- For information on ABA/Behavior therapy, please review the Parents Guide to ABA Therapy tool kit.
- Please review our Technology resources for more information on alternative communication devices.
- To find local autism service providers and supports, please search our online Resource Guide.