The alarm goes off. I just want to stay in bed. Why can’t it be Saturday yet?? Time to wake the kids up. I wake my daughter, she smiles and jumps out of bed.
My son is a different matter altogether. We will spend the next 2 hours coaxing, bribing, and sometimes physically pulling him out of bed and into the shower, as he has no intention of waking up for several hours, though he’s been in bed for 12 hours, so it’s not lack of sleep. By “we”, I mean myself and the caregiver who comes on weekdays to help with this. Some mornings it takes both of us.
My son has autism.
With autism there are frequently many other diagnosis’ that come along with it. My son has to shower because at the age of 9 he still wets through everything – pull up, an insert inside the pull up, and the water proof mattress pad. He’s really quite talented in this area, as I’ve worked with a lot of children as a former nanny, preschool teacher and sister to 10 siblings, so I know.
Being a boy, and having sensory issues that come with autism – showers are not his thing. Most mornings he doesn’t get breakfast because he waits until the last possible second to take his shower and we are often late to school. We’ve offered every reward in the book and most of the time it doesn’t matter.
Last possible time to leave for school and still be on time. Some mornings we change it up and go to speech therapy instead! I spend 45 minutes in the waiting room so he can learn how to pronounce words, learn to read facial expressions, learn what things like idioms are because people with autism take everything literally.
Afterward I’ll spend the whole drive to school dealing with a meltdown because speech therapy is right next to the best doughnut place in town… and he wants doughnuts. Sometimes I give in rather than listening to him screaming and worrying he’ll kick my head as I drive. One time I thought it would be nice to get doughnuts after speech, and suddenly it is a part of our routine in his head.
Change in routine can cause massive meltdowns. Children and adults with autism in meltdown mode can bang their heads or other body parts, screaming, inability to rationally think through problems and solutions and more. They can also react poorly to changes in stimuli, clothes that don’t fit right, loud (or loud to them) noises and many more things. It also can be different in length of time (instead of minutes it can be hours with a bad one) and intensity.
10:00 – 2:45 P.M.
On a good day I start dinner early so it will be ready when we get home later that night.
Most days there are doctor appointments to make, paperwork to track down, and insurance companies to fight with. I spend a big part of my day on the phone trying to take care of all of it, usually a couple hours.
This is really the only time I have to do any cleaning during the day. Also the only time I have for appointments for myself and sometimes (frequently) one of my son’s many doctor’s appointments happen during this time.
Some days, frankly I’m tired and a nap or a favorite TV show might happen rather than the laundry or bathrooms that need to be cleaned.
I have to pick the kids up early from school most days. This is so we can start the after school rounds of therapy.
Occupational therapy (OT), physical therapy (PT), and counseling, each of them sometimes more than once a week. I spend a lot of time in waiting rooms. I’ve gotten to know a lot of other mom’s over the years as we compare diagnosis’ and treatments, share info on the best schools and ways to get help.
6 or 7 P.M.
Depending on the night, that’s when we get home. Dinner is a very rushed affair and I curse myself for not starting dinner earlier in the day if I haven’t already.
Fast food creeps in far more than I would like.
Another diagnosis my son has is chronic constipation. This frequently is an issue with autism for many different reasons. A couple years ago he had a cecostomy (a surgical opening into his cecum) and nightly, we flush his colon with various fluids. He has to sit on the toilet for about an hour each night.
This is our last ditch target for bed. My son does not function well on less than 10-12 hours of sleep. I don’t do well without some time for myself and with my husband.
Our lives are crazy and wacky. Play time becomes social skills training while playing with other kids at OT.
I spend a lot of time questioning if we are doing the right things. Should we try that therapy or this one? This medication or that one? At the end of the day I just pray it will all be worth it and he will be able to be the best version of himself and reach his potential.
Today’s guest poster is Calleen Petersen. I have known Calleen for six years, and I have watched her son grow up. She is an amazing mother, and has immense knowledge of Autism. If you would like to connect with her, you can contact her at email@example.com.