It’s April. Autism Awareness Month. And today is World Autism Awareness Day, as declared by the UN back in 2008, which happens to be the latest year we have stats for autism in the U.S. 1 in 88. 1 in 54 boys. No doubt those numbers are higher now.

Those numbers make me think there can’t be too many people around who aren’t aware of autism. It may not touch them directly (yet), but they are at least aware of it.

At our house, we’re wearing blue and puzzle pieces. We’re celebrating our son, who was diagnosed when he was three-years-old and is now seven.

As the saying goes, if you know one person with autism, you know one person with autism (because the spectrum is so diverse). Today I thought you might want to get to know our “one person” a little better, to understand what life is like for a level three child with autism.
day in life7:00am-ish: James is currently sleeping in and it is glorious! Seriously. There are many, many mornings he wakes up at 3:00am and doesn’t go back to sleep. But right now he’s in a good routine. He calls for Daddy when he wakes up, and when Lee opens his door, James always asks, “School?” He doesn’t know what day of the week it is, but school days are his favorite. He eats breakfast with Daddy and plays until it’s time to get ready for school.

8:00am: We start getting ready for school. James gets a bath each morning because he sleeps in diapers and usually needs a bath to get clean. When he gets out he says, “Mommy, hold you!” and climbs in my lap. We sit for as long as we can. Then I get him dressed, usually in athletic pants so he can get them up and down easily when he needs to go to the bathroom (He wears undies to school! Yay!). Then I pack his lunch. He almost always gets a cheese quesadilla, fruit (apple slices, strawberries, or cantaloupe), Cheeze It mix (double cheese), and a vegetable (cucumber slices or cherry tomatoes). The only day he doesn’t take his lunch to school is pizza day. But it confuses him not to have his lunch box in his backpack, so we let him put it in there, but slide it out right before he gets out the door. A van picks him up and takes him to school. The driver helps him in the van and buckles him in.

day 2

9-3: James can’t tell us what happens at school, so his teachers send us detailed notes and he has a personal therapist (called a TSS here in PA) who some times texts me pictures. James is in a verbal behavior, autistic support classroom and he loves it! They work hard on helping him learn new words, interact with peers, and follow instructions. He gets speech therapy and occupational therapy once a week. He likes music class but not PE (he’d rather run around than play a structured game). He loves to swing at recess. He likes lunch too, although sometimes the noise in the cafeteria bothers him. So his class gets in there first so it starts out quiet and gets louder as kids come in instead of being loud when his class gets there.

Here’s what he worked on yesterday at school: giving peers the toys they asked for without grabbing, matching identical objects, controlling voice volume so peer can hear him, letter recognition, and labeling actions (answering “what am I doing?” when adult models an action like clapping or laughing).

day 3

4:00ish: James comes home from school, goes to the bathroom, and gets a diaper on. His new medicine is making him have frequent bowel movements and he hasn’t learned to go on the potty yet. For the last week we’ve been changing 4-6 diapers between 4:00 and 8:00. James gets his snack and gets to play until dinner time. His snack is always Cheeze It Mix. Play time is with blocks, his favorite toy right now. During this time we don’t get the chance to sit down much. James is always on the move and isn’t always safe. He often puts non-food items in his mouth (like toy car wheels or used dryer sheets) and he climbs everything. He keeps us busy!

day 4

We do try to get out, either to play outside in the yard or run errands. James loves running errands! He doesn’t play with David (who is two years older) often. Sometimes he asks David for tickles or to push him on the swing, but if we let him, he could go the entire day without saying a word to David. We hope their interaction increases as James gets older!

day 5

7:00ish: By this time we’re usually pretty tired (even though he may not be!). He takes another bath and then gets to play in his room on his iPad until he falls asleep. If he isn’t asleep by 9:00, we give him a little Melatonin (and take away the iPad). James doesn’t have any furniture in his room, only a mattress on the floor, so his room is safe for him to be in by himself.

day 6

So, that’s an average day! And here’s a video so you can hear his sweet voice and get an even better idea of life with him!

Life with seven and a half year old James is a lot like life with three year old James. He’s made progress since then of course (like being able to answer yes and no questions now!), but overall it’s like having a big toddler. We celebrate his small accomplishments because to us they are huge. I think back to just over a year ago when we had to put a pair of overalls on over his clothes, backwards and safety pinned just so he wouldn’t take all his clothes off each night (and even with the extra steps, sometimes he still got naked). Or when he would just lay down on the floor (sidewalk, parking lot, hallway …) when he didn’t want to go where we were going. Or before we worked hard on feeding therapy, to the point he now eats a bigger variety of foods (the only meat he likes is still Chick fil A nuggets, but you can’t blame him for that!).

Each April gives our family a chance to reflect on how far we’ve come. Not only the developments James has made, but the ones we’ve made as a family. Thank you for being aware of autism. Thank you for caring for people who have autism, and their families.

autism blue

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