One of the reasons I stopped blogging four or five years ago is because of autism. It isn’t the main reason, but it surely was a reason. I don’t really remember a lot of my blogging about 6-inch from the old days. My doctor says that stresses can change your brain and affect memories. I believe it. I can’t remember what I’ve told you about 6-inch, so I’ll tell you everything.
6-inch was diagnosed with autism when he was two, and just a couple of days after his third birthday he started at a special autism preschool here in Tucson. He went to that preschool for two years. He is now finishing up first grade in an intensive classroom at a local elementary school; he is in a class with ten other children, and nine of those ten are autistic little boys. He is at home there, and we couldn’t be happier with the school and his teachers.
Autism is a nasty, frustrating little fucker. My son is wonderful and a true gift, but the autism…..goddamn the autism all to hell. Can you tell how exasperated I am sometimes? Our lives revolve around autism; to an extent Footlong’s life is affected as well, but we try to keep his as normal as possible at all costs. 6-inch speaks and acts like a young toddler, and that is hard to deal with in public places. Grocery shopping is near impossible. Shopping trips with no clear plan for purchasing, like clothes or shoe shopping, are simply not possible. One of us has to go alone or we shop online. We can’t go out to eat. We can’t do things as a family, like bowling, movies, museums, or festivals. As we have no family out here in Arizona we have no help and no help with childcare. Date nights? They don’t happen. Our marriage has suffered a bit from lack of quality time. We have learned all we can from Preston, though, and we try and make his life as happy and comfortable as possible, with unsavory activities kept to a minimum. Yes, his name is Preston. Can’t remember if I ever told you guys that.
Our little man is precious as can be. He loves tablets/phones, and the cute little videos he watches help teach him new words and phrases. I know how some parents feel about screen time, but here it is a necessity. He loves watching alphabet and color videos, foreign Happy Meal commercials (yay for YouTube!), and cartoon videos with catchy music that he can dance and jump too. He loves, loves, LOVES hugs, snuggles, kisses, and being tickled. He laughs a lot, and he acts just like he is one of us, with not a problem in the world. It is a bit of a disconnect for those unfamiliar with Preston to see a 50 pound boy and hear garbled baby talk when he runs over to say hi. Oh, the looks we get. His speech is slow and deliberate, and he sounds like a precious toddler. He can ask for purple chips (salt and vinegar chips that come in a purple bag), Fritos, pink or blue square cookies (blueberry or cherry frosted PopTarts), chicken nuggets, milkshakes, drinks, and peanut butter cookies. He can ask for the phone, tablet, or TV program that he wants. He can ask for tickles, hugs, kisses, a bath, to go to bed, and to be cleaned up (he still poops in Pull-Ups). He will also occasionally ask us to do stuff like go jumping at the trampoline park, go to the playground, or go to Target and get a toy. He really doesn’t understand feelings and emotions, but he can successfully tell me he is hungry or hurt. That’s a start.
For all the positives though there are ten times more negatives. I have never had a conversation with my son. He has never, ever been able to tell me how he feels or how his day was. He’s never told me a story, sang a song, let me read a book to him (he hates being read to), or pretended to care for an animal/baby doll. He doesn’t understand people’s feelings. I’ve never seen him play pretend. He’s never played with other kids, like taking turns or playing a game. He doesn’t even talk to kids. He knows when we get mad he needs to say “sorry” but that is it. Autism dictates family outings. It dictates plans and travel. It has, at times, cost us our sanity. The last four years of my life have been difficult and isolating. I stayed home with the kids while John worked full-time, usually around 50 hours a week. I had no help with the kids, and no friends here in Tucson other than those on Facebook. I crawled into a shell without meaning to. I’m still the same me for the most part, but I’m not as outgoing. I feel like I’ve forgotten how to be around people and socialize. I have gone as long as three weeks without leaving the house. I have beaten myself up a million different ways, wondering if I did this to Preston and chastising myself for not being a better mother. You just have no idea. I’ve given my kids everything. Last March I was at the end of my rope and had to get a part-time job. I got a job as a carhop at a local drive-in that opened about a mile from my house. Three or four nights a week, after John gets home to take over with the kids, I get to escape to work where I can socialize, be around people, and earn some fun money. I’ve never known work as an adult that is pleasant and fun; nursing sure as shit wasn’t pleasant or fun. This is the kind of job that I can leave completely when I clock out and not take it home with me. I don’t need the stress. It’s stressful when we’re busy, of course, but it’s not the same as being responsible for someone’s life.
In the past we have received services through the state, but I stopped out of frustration two years ago. We were denied respite care and other stuff, and I lost it. I just lost it. Preston doesn’t qualify for any financial assistance based on our income, so we have a little mountain of bills that we’re paying on. We no longer do supplemental therapies several times a week (so expensive), but he gets therapies at school. Preston’s teacher is urging me to reapply for services with the state, but I’m hesitant. I feel like we’re just fucking ignored and don’t get anything for the hassle because of John’s terrific job. I know that he will need those services in place as he gets older though so I should suck it up and do it.
Garrett (yes, Footlong has a real name too. As he is going through puberty I don’t think his nickname is appropriate…LOL) asked me one time if I regretted having Preston. It was an honest question, and I answered honestly. NO. No, I don’t regret having Preston. I’ll tell you what Preston is. Preston is the greatest gift from the universe to remind me that I have no control over anything and to stop and enjoy every little minute of anything that makes me happy. When I got pregnant with Garrett I was a cocky little bitch. The pregnancy was planned, things were carefully bought, I knew from the get-go that he was a boy, and all went to plan. For 5 years I got to be the mom I always wanted to be. And then there was Preston. To start, Preston wasn’t planned; he was more of an incredulous surprise. I thought he was a girl; he wasn’t. I had a rough pregnancy full of contractions and high blood pressure and was on bedrest after 30 weeks. With Garrett I had your classic vaginal delivery; Preston was a C-section for failure to progress. Garrett drank milk and then formula well; Preston kept having all sorts of digestive problems and didn’t grow so well at one time. Garrett met or exceeded all developmental milestones; Preston achieved physical milestones (rolling over, crawling, walking, losing teeth, grabbing things) but not developmental ones (clapping hands, talking, sharing, pretending, self-care, etc.). Every single day with him is an adventure. Will there be full-body tantrums with head banging because he doesn’t want to go somewhere? Will he eat more than potato chips and pop-tarts today? Will he follow any directions? How long will it take to get him dressed? Can we go to the grocery store, or should I just ask John to stop on the way home? Will he socialize, or will he want to be alone with the tablet off in Prestonland?
I can’t wait for the day when I can sit down and have a real question-and-answers conversation with my son. I can’t wait to hear all of the things he likes and how they make him feel. I want to know what things make him sad and scare him. I want to know what he want to be when he grows up. I want to be able to leave the house. I want to be able to be “normal” or as normal as we can be. I want to go out dinner, sit in a booth with my family, and have a meal. There are so many things I can’t wait for. And there are things I’m scared of too, like what life will be like for Preston as he gets older. Will he be able to hold down a job? Will he able to speak, read, and write well? Will he fall in love? Will someone accept him for who he is and want to be with him? Will he ever have kids? Will he be living with me and John for the rest of our lives? How will Garrett live his life? He has already told me he feels an obligation toward his brother. Some days it’s all so fucking much. I am so grateful, though. Nothing on earth is better than when this happy little boy tells me “I ya yoo” and gives me “huggies” and “mops.” Mops are what he calls kisses because of the sound they make. How fucking precious is that? Do y’all remember Justin Timberlake and Andy Samberg singing “Dick in a Box” on Saturday Night Live? “It’s my dick in a box!” We changed up the lyrics here in our house, and I’ve been known to sing, “It’s my huggies and mops! Yeah, my huggies and mops, girl. It’s my huggies and mops!” You find the laughs where you can!