30 Days of Autism

I'm often asked what its like to raise an autistic child. There is no quick way to answer that question. The answer I give probably depends on the day. Each day, week, month is different. I'm never sure what to expect. As a way to answer the question, I've decided to write something everyday for a month about what its like raising my autistic child. Autism Awareness month seemed like an appropriate month for this project. So, here goes...

April 1: No April fools day jokes, he doesn't understand them. Bambam is extremely literal and takes everything at face value. Jokes simply don't register. Just another day in our household.

April 2: Today is World Autism Awareness/Acceptance Day. So we changed the light bulbs in front of our house to blue ones to join the "Light it up Blue" for autism campaign. Bambam and I also made cookies with blue frosting to take to his teachers and aids at school. We are so very grateful for all of them.

April 3: Bambam's class had a field trip today. In order for Bambam to go on field trips with his class, I have to go with him. Since we never know how he will respond to a new situation, we always need to have a quick exit plan available. So, I follow the school bus in my car and if necessary, I leave with him when needed. Today was one of those days. He lasted all of about 2 minutes before the "school today, go to school, go see E, its E time, its Phil time...." started. He just couldn't get past the fact that Wednesday is a school day and he should be at school doing his work with Mrs. E and Phil. There is no distracting this kid when he gets stuck on an idea. So, we cut our losses and headed back to school. On the bright side, I only missed 2 hours of work instead of 4.

April 4: Today is STAR Sports day. Bambam participates in a recreational sports league for kids with developmental disabilities. He LOVES it. And the volunteers are amazing, all college kids. He gets to run around kicking balls, hitting balls, playing with other kids and volunteers while I get an hour to sit and watch and talk to other moms who speak my language. Its a win/win. One of the things I like about having a special needs child is the ability to see goodness in this world that I otherwise wouldn't see. These college kids really are awesome. Every day heroes is what we call them.

April 5: Some days 8:00 pm can't come fast enough. Some days its just really hard to listen to or talk about the same damn airplane for the 864th time that day. Some days I just have to say "I'm not talking about it anymore, I'm done." And then I hear a little voice saying "I'm not talking about the airplane, I'm not talking about the airplane." I love his tenacity. But really, that isn't much better. Can't we talk about something else, anything else? Please?

April 6: Med changes suck. We are trying a new dosage of one of Bambam's medications. And he's not responding well. He is uncomfortable in his own skin. That's the only way I can describe it. And its awful to watch. We are supposed to give it a week. We are on day 3. I'm not sure we will make it a week. So hard to watch my baby struggle. (we lasted 4 days, then went back to his old dosage)

April 7: Its raining today, so we're stuck inside...all day. Not a good combination for a child who needs to run and jump and play large. That is why we have a small trampoline in our living room, where the coffee table used to be. Yes, our front room advertises that we are a special needs household. And right now I'm watching Bambam jump from the trampoline into a bean bag chair a few feet away and yell "splash" when he lands. Over and over and over again. 

April 8: More testing for Bambam's GI issues. For the past 3 days I've been scraping poo (yes I said poo) from his pull ups to place in small vials. 3 times a day for 3 days. (yes, he does poo that often) Then I overnight FedEx'ed the "package" to the lab. You really haven't lived until you've scraped poo from a pull up. Just a day in the life.

April 9: Bambam has sharing at school today. The topic is "what I did over spring break". So we took pictures of our activities at the Fun House and made a poster using the pictures and simple captions. We practiced over and over. I'm hoping he'll actually get up in front of his class and do it. I will never give up trying and presenting him with opportunities to grow. 

April 10: An example of Bambam's struggles with language: Driving home we saw a teenager walking up the hill.
Bambam: What is that?
Me: What?
Bambam: That boy.
Me: Who is that. When its a person you say 'who is that'.
Bambam: I don't know.
Me: Can you say 'who is that?'
Bambam: I don't know!
Its funny and a little heartbreaking at the same time. I felt like I was in the Laurel and Hardy "Who's on First" skit. But he really doesn't understand. And never repeats what I'm trying to get him to say. It can be frustrating. Language is a puzzle for him.

April 11: Bambam wakes up happy every morning, eager to start the day. We are fortunate that we do not have the anger and aggression that can be common with autism. He's a happy, content child who seems to be unaware that he is "different". I pray everyday that this stays with him his whole life. Sometimes awareness can be devastating.

April 12: Today is Friday. The third day of no school this week, it was a short week for conferences. And Bambam is NOT happy about it. He loves school and thrives on consistency. We just recently got to where he understood that there was no school on the weekends, and accepted it. But non-school days during the week throw him into a tizzy. All day long I hear "I go school today?" I've probably answered that question 100 times today. Patience, patience, patience. And the ability to have the same conversation multiple times a day. That is what is needed to raise my autistic child.

April 13:  We had Bambam's spring conference yesterday at school. Oh, where to begin. His conferences are nothing like what we were used to. Typical measures for a child his age just don't apply. He's behind academically, socially, emotionally, in every way. If it weren't for the great people and educators that surround him at school, these meetings would be so much harder. But we focus on his improvements, no matter how small. And they always celebrate Ryan for who he is, where he is, and what he has to offer.

April 14: The iPad. Thank God for the iPad. There are days when we use it as a crutch and let Bambam watch his favorite videos over and over. I know, its not the best thing for him. But some days, we all just need to step back, take a deep breath, and relax in front of a screen. I may not win parent of the year, but we will survive.

April 15: Tax day. Having a special needs child means an extra deduction on our state taxes. But don't get all jealous. It also means itemizing all the out of pocket medical costs to deduct on our federal taxes. It's thousands and thousands of dollars. Autism is expensive.

April 16: Today Bambam pulled out his loose tooth. It was bothering him that it was loose, that's not the way it is "supposed to be". He doesn't like things that are out of the ordinary, he wants them to always be the same. So no loose tooth, simply pull it out and be done with it. And when asked if he wanted to look at his new toothless smile in the mirror he responded "naw, wanna go pway outside."

April 17: According to Bambam's aid, he can read several sight words. Who knew?!?! That child does not voluntarily show you what he can do. EVER. We've always said that he knows and can do so much more than he lets on. And it makes things so hard. How do you know what to work on if you don't know what he can do?

April 18: Bambam had STAR Sports today. But there were double the kids as usual. It was very noisy and visually chaotic. And to make it even worse, his usual aid "Sam" was not there. Bambam really struggled. He is hypersensitive to noise and visual stimulation. He spent much of the hour throwing himself on the ground or running into the walls. This deep pressure impact helps to calm him. Its one of the ways he tries to self regulate (instead of using his words or other more accepted calming techniques), but it is painful to watch and scary for those who don't know and understand. Sigh.

April 19: We're off to the Fun House for the weekend. But we don't tell Bambam until about 10 minutes before we leave. He cannot handle anticipation; has virtually no self regulation. If he knows ahead of time, he will perseverate on going to the fun house all during school, getting nothing else done. "Go to Fun House now?" will be uttered by him every 30 seconds until we leave.

April 20: So thankful we have the Fun House. Bambam loves it. To him, it is an extension of home, he's been going there since he was 11 days old at least once a month. Without it, we would never have a vacation. He does not do well in new situations so hotels are out. Day trips to new places are also hard. When we attempted a trip to the aquarium last summer, he lasted 10 minutes. We haven't yet tried the zoo. But at the Fun House we go to the airport, the Lodge, the Village, the river, the pool, etc. And he loves it as he knows all these places and is comfortable.

April 21: Motor Planning is difficult for Bambam. At 7 years old, he still cannot peddle a bike. And I'm not talking about balance and riding without training wheels. I mean he cannot get his legs and feet to push the peddles around in a forward motion, one leg push down, one leg pull up. He sits on a tag along bike behind Mr. Fixit and just rests his feet on the peddles. Mr. Fixit pulls all 65 pounds of him and the tag along bike, pretty much dead weight. We work on this weekly. Bambam got a new bile for his birthday. He sits on it, pushes it around with his feet on the ground, but cannot peddle. I crouch over behind the bike with my hands on his feet on the peddles and maneuver his feet around. It is not easy, or fun. But my kid will eventually learn how to ride a bike, dammit.

April 22: It's Special Needs Ride Night! The local Sheriff's Mounted Posse hosts a ride for special needs kids twice a year. The kids get to ride the horses lead around the arena by the deputies. It's awesome. And they take a picture in front of a green screen and then insert different backgrounds. We have one showing a cattle roundup, and an old western town backdrop. It's very fun. It takes some time and initiative, but there are many opportunities for special needs kids if you go looking. They are different opportunities than "typical" kids have, but they make for great memories just the same.

April 23: OMG. After 7 years you'd think this would no longer surprise me. The BLOWOUT. Like many kids with autism, Bambam has major GI issues. As a toddler and preschooler, it was not unusual for him to wake up screaming bloody murder in the middle of the night several nights a week from "tummy trouble". Thankfully, those days are gone. But, he still struggles with his bowels. Meaning, he doesn't have control. He's either constipated or has diarrhea.  Sometimes he will go several days without a BM and then have a major blow out. I've never seen anything like it before. There is poop everywhere. Down his legs, in his shoes, up his back to his shoulder blades (its even been in his hair), up his front to his belly button, squishing out everywhere. Its not uncommon to just throw away whatever he was wearing, I don't think I could get it clean. And then I dump him in the shower. As he gets older, it gets more disgusting. If we could only get the BM's under control....

April 24: The weather is getting nicer and we went to the park after school. Since I pick Bambam up an hour early from school everyday, the park was empty when we got there. And he had a great time flying his glider, swinging, playing on the equipment. But no sand. I don't let him play in the huge sandbox. I know, bad mom. But when I look at it all I see is a great big litter box for all the neighborhood cats. And he still mouths things, including his fingers. Ew, just can't do it. But he loves the park and has a great time. Until all the other kids arrive. Then my bubbly, laughing, playing child gets quiet and comes to sit next to me and watches the other kids playing tag together on the equipment. And it breaks my heart as I watch him watching the other kids longingly. And not know how to join in. And I ask him if he wants to play with the other kids. And he hesitates .... before he answers "no, go home now". And I want to cry.

April 25: We are having some drywall repaired on the ceiling in our family room. So everything had to be removed and put in other rooms. So our really big plant (tree?) that is usually in the corner of the family room is now against the stairs in the entry hall and everyone has to walk around its huge leaves in the hallway and on the stairs. And one really big, beautiful leaf was in Bambam's way coming down the stairs. So he pulled it off. Not out of anger or spite or being mischievous, just because it was in his way. He was so surprised that I was mad. If something is in your way, just get rid of it. Logical. But not necessarily the right thing to do. No grey in his world, just black and white.

April 26: One of Bambam's meds is a stimulant for his ADHD. It is considered a controlled substance. So, every 30 days I have to go by the doctor's office to pick up a script and take it to the pharmacy. Today was the day this month. Such a pain.
April 27: Bambam has terrible eczema on his feet. Its so bad that his feet and toes crack and peel and bleed and look like they are rotting and going to fall off. Its really disgusting. And I've tried everything. Every night after he is asleep, I creep back into his bedroom and slather his feet with special cream and then put on socks. It helps, but does not cure the problem. We are working with a new holistic doctor to see if we can't find the cause.

April 28: Bambam started Special Olympics golf today. He LOVES golf. Started hitting a golf ball when he was 3 years old. The summer he was 5 he broke the sliding glass door hitting a golf ball into it. From then on it has been wiffle balls only in the back yard. So we thought we'd try Special Olympics golf. He's the only kid. There is no one close to his age, they are all adults. But he does not care. He gets to hit golf balls. And hit he does. One after another. Until there are blisters on his hands. Until we tell him he has to stop.

April 29: Something triggered Bambam's anxiety tonight. I'm not even sure what. But at 7:00 he wanted to go to bed. Bed is his safe place, his comfort. When he is really anxious, when his "fight or flight" response has been triggered, he wants to go to bed. In the past I've not been able to calm him, he has not sought comfort from me or anyone else. He goes to bed with his heavy covers and grinds his teeth. But tonight, tonight my boy was laying in his bed and I was sitting beside him in the rocking chair and he held out his hand to me and said "hold hands". He reached out to me for comfort. My boy sought comfort from me for the first time. So I held his hand, and with my other hand I rubbed the back of his hand, his arm, his back. I tried to impart some of my strength into him, rub out some of his stress and anxiety. And in time he fell into a peacefull sleep. My son reached out to me for comfort tonight. Little miracles are amazing.

April 30: This boy is amazing. He is joyful. He is funny. He is loving. He is affectionate. He is athletic. He is tall. He is gentle. He is sweet. He is strong. He is fast. He is pesisitant. He is tenacious. He is also autistic. But autism does not define him. It is just one part of him. One of many, many parts. He is beautiful.

Note: Being as technologically inept as I am, I thought this had published on April 30th. Oh well, better late then never. Happy Autism Awareness month, about 20 days late.  :)