William will be 7 years old in December. The time has flown, but it has been far from an easy journey. When he was a baby, he boycotted sleep. He only slept for a few hours at a time forever and he took 2 naps a day for only a few months. That turned into one nap a day, and all too soon (age 2 I think) no naps at all. He didn't sleep all the way through the night for the first time until he was 3ish. Honestly, the first couple years or so of his life were very zombie-like for us. We have memories, but gosh, lack of sleep was probably the biggest one.
I think in the back of my mind, I always knew there was something special and different about my son. He just didn't follow the same trends as my friends' kids were. He marched to the beat of his own drum always. And most of all, he was much more comfortable interacting with adults than with kids of any age. When he started preschool in 2011, it was very rough. He had nightmares for weeks before school started, although he had never shown any signs of separation anxiety. When school started, he struggled with transitions; moving from one activity to another, especially when it was outside the classroom (the library, the cafeteria for breakfast). He spun down the hallways. Yes, spun. As in twirling circles with his body. He wouldn't interact with other kids, freaking out if they came within a 2 foot radius of his personal space. When I picked Will up from Pre-K, I asked what he did and he could never tell me. He had no idea what the names of the other kids in his class were. We started evaluations, which labeled him with a "sensory disorder" and eventually he started occupational therapy and special ed. There were a lot of techniques we used to try and keep his body calm and help him move through his day with little disruption. He was showing signs of incredible intelligence, using words like "calculator", "interpreter" and "compromise" correctly in sentences, in preschool! By the end of the year, with a ton of work, he was transitioning smoothly, starting to participate in class, and letting kids within arm's length. We continued special ed meetings throughout the summer in hopes of avoiding too much reversion to his initial issues.
Then, after all that work to make Will comfortable enough to actually learn anything, our city redistricted the schools, and Will was sent to a different school for Kindergarten. I threw a fit. I called the principal, the teacher, the school district; anyone who would listen. Will was doing so well that he tested out of having any sort of services for Kindergarten. I knew this would cause problems. He was moving from a school he was comfortable with, a 2.5 hour day, OT for an hour a week, special ed 3 hours a week to: a new school, a 6 hour day, no support and a whole school full of kids and staff he'd never seen before. I fought, I fought hard to have him stay where he had finally become comfortable, where there was in-house occupational therapy and where he knew a lot of the staff. I stomped my feet and cried, and met with the school district's therapist. "He'll do fine" they said. "We don't want to set him up to fail" they said. "He's made so much progress" they said. So I relented. But not without a warning; to the principal and the teacher. I told them; it's going to be rough, he isn't going to do well with this big move in his life, he doesn't handle change well.
And Kindergarten started with a giant bang. We ended up at a large children's hospital the weekend before school started. Will had gone in for a routine physical to start school, and they found ketones in his urine sample. They checked his blood sugar and it was so high, their meter couldn't even register it, but it was well over 600 (normal BG/Blood Glucose is 70-100). It was terrifying. I remember that day. I remember how my heart sank into my toes and the tears flowed freely as I was undereducated and had no idea what to expect. All I knew is that I was being told to bring my child to a huge hospital 45 minutes away as soon as possible. It was an overnight stay with lots of blood tests and insulin shots. By the next day we had him in the 200s, and we had a formal training on how to administer insulin injections and monitor his sugars. My husband and I actually had to give each other saline shots in the arm to practice. I never thought I would ever be in the situation of giving my little 5-year-old boy an injection every time he ate anything. It was heart-wrenching. In fact, we were so impressed by how well he did with all the needles and felt so bad that this was happening to him, we drove directly to Toys R Us from the hospital and bought him the biggest, most expensive 3DS with games and all the bells and whistles, just to reward him for his awesomeness. And then 2 days later, he had to go to school.
And so comes Kindergarten. I'm pretty sure I was in the principal's office every other day or so those first couple of weeks. I think Will even bit the principal at one point. I was even told that if I hadn't called during the summer with all my concerns, Will would have been suspended. This was the point we noticed that he had very little control over his body movements, couldn't focus and was very defiant. So I took to the internet and did loads of research. LOADS. I read every article I could find that had anything to do with what my little boy's symptoms were. Immediately, ADHD was the prominent diagnosis. I printed out a very long checklist/test and Will fit nearly every single item on that list. So I brought him to his pediatrician. While we were in the office, the doctor says "What is the problem?". And Will showed him, by jumping on and off the exam table, pushing the doctor across the room on his wheely stool, turning the lights on and off, climbing all over me, etc. All I did was put my hands out and say "This." We started him on medication (which ended up having to be changed once to one that worked longer), and he was a different child. Still Will, still charming and intelligent, still sweet and kind. But he could focus. He could sit still and control his body movements. He could learn. At least until about 5:30 or so. That's when it wears off and you can almost set your watch to it because he starts running around like a mad man.
So Kindergarten started going well. His behavior issues were under control and we could concentrate on his academic abilities. In mid-October, his blood sugars were dropping out too low and we ended up discontinuing his insulin injections. In the middle of the school year, beginning of 2013, we started seeing a psychiatrist and a behavior therapist. This has been all the difference. Our behavior therapist performed an IQ test on Will and he didn't do well with the numbers or math, but excelled beyond what a lot of adults can do verbally/vocabulary. There were a lot of tests and evaluations from us, from his teacher and from the therapist herself. After a few months of working really hard, the diagnosis was determined. High functioning, low spectrum autism. With a little research, we found that Will fit the mold perfectly. Since we have decided what is happening in his little brain, we've been able to adjust and mold his educational experience to fit his needs.
Now we are in 1st grade, and we're doing a lot better. He still has obstacles he'll have to overcome, one now being social anxiety. But he's smart, and funny, and clever in a way that I know some adults couldn't even pull off. He loves space, science, medicine (he loves learning about parts of the body; blood, bones, organs, etc) and Star Wars. It's been about a year since we've had to give him any insulin. We've reduced a large portion of the gluten from his diet, and his BG levels have been consistent and within normal range.
Although Will has the highest functioning form of autism and many of the more intense symptoms do not apply to him, I have learned a lot about this condition. I want to share some of things you might not know about autism...
- Did you know that many children with autism hear all sounds in their environment at the same volume? Sometimes when we are walking through our Walmart, Will covers his ears or gets highly agitated when we are in the meat section, especially if it's crowded/busy. There is some sort of machinery there that emits a buzzing sound that he picks up clearly. So think about it; buzzing machinery, people talking, wheels of the cart squeaking, the rolling sound of the cart against the floor, the overhead music, cell phones ringing, etc. all being played in your ear at the same volume. So if you see a kid in the grocery store throwing a full-on tantrum, try to keep in mind that this is how their body is processing all that loud noise at once. Try to be sympathetic and not judgmental. As parents, this is hard enough for us to deal with; our child is in pain and frustrated, and there's not a whole lot we can do about it. We don't always know when our child will be triggered. It is even more difficult when people refer to our child as "bratty" or "spoiled". I can tell you, that no temper tantrum ever thrown by my child has wielded a reward of whatever it is he wanted. Even if that means I have to carry him out of the store over my shoulder, kicking and screaming. If I need groceries, I need groceries. I'm not going to let my child, autistic or otherwise, dictate how I plan my day and I guarantee that most autism parents feel the same way. Just because you catch the tantrum, doesn't mean you know why it's happening. Thankfully, we have mostly moved out of the tantrum phase as he is getting really good at explaining his feelings through words. But that doesn't mean we're immune!
- Children with autism have a difficult time making eye contact. Will is currently working on making eye contact when he meets new people or when he's greeting someone he already knows. Even though we are working really hard on eye contact, we know that even if he is not looking, he hears EVERYTHING. There have been many times that I have been talking to him when he's playing and I don't think he hears a word I say. I say to him, "Will!" and he repeats everything back to me. So just because someone isn't looking you in the eye, don't assume that they are being disrespectful. Have you ever tried REALLY looking someone in the eye? It's hard, and it can be uncomfortable. Think of how hard it is for someone with autism.
- Kids with autism sometimes can only focus on one thing. Sometimes they are obsessed with things and when they're in a conversation, that is where their focus always returns to. Some examples of obsessions are space, bugs/lizards, or plants. Will used to be like this with robots and machinery. No matter what kind of conversation we tried to have with him, he always brought up robots. At this point his interests have diversified some, but he can still go on for hours about one topic if you let him.
- It's estimated that 1 in 54 boys and 1 in 252 girls are diagnosed with autism each year.
- Researchers are studying a link between immune/autoimmune issues and autism. Diabetes is an autoimmune disease.
- Sleep issues are common in people who are autistic.
- There is no medical detection or cure for autism.
- There is not a verified link between vaccines and children with autism.
- There is a study being conducted relating autism to children who were born late and in which labor had to be induced. (That applies to us)
My son has ADHD. He's autistic. He's diabetic. He's the best thing that has ever happened to me. He has taught me patience, although I don't always utilize it like I should. He has taught me acceptance, because he is unique and quirky and is not afraid to be himself. He has taught me perseverance, because I have had to fight to get him everything he needs to have a fair opportunity at an education and a normal life. He has taught me self-worth, because to him, I'm beautiful and he tells me so. I've not ever been a perfect person. I've not been a perfect mother. But I am a better person because William is in my life. I know that he was given to me to care for, to fight for, to learn for. He was given to me because we need each other.
I know this was a long one, but it's a critical part of our lives. It's important to me that autism research and education are getting attention. Please feel free to share your stories below as well. Thank you for stopping by, especially for this post.
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