We, like a lot of people around this area, have been on Spring Break this week! Yea! Party time- excellent- all those feelings. Even though we homeschool our girls, we stick (loosely) to the public school calendar because of my son, Tommy.
Tommy is a senior in high school this year, and is going to be 18 next week. He doesn't drive, hasn't gotten in to any colleges, and, in fact, we aren't exactly sure what is going to happen next year. If not for faith and prayer, I'd be a wreck right about now. I'm quite sure I'm NOT panicking because God loves him more than I do, even though I can't really fathom that, either. So, I'm amazingly calm, even though I'm pretty clueless (about the immediate future, mind you).
In the spirit of Autism Awareness/Acceptance month, I'll tell you a little about life with Tommy (not to be confused with life in the nuthouse, or living in chaos, or anything crazy like that).
This is the beginning of our journey:
Tommy did not speak in sentences until he was between four and five years old. He had words, sure, but not sentences- and then he had echolalia sentences which were repeats of phrases he heard. His first full sentence was "We just got a letter" (remember Blue's Clues? I LOVE that little blue dog!) and actually, I think he may have been two when he said that- but only I and close family could understand what he was saying. We used a lot of signs. When we were out and about sometimes, a few people would ask if he was born deaf (I guess we were pretty good signers)? I'd be like, "he's not deaf, he's autistic." What?!? “Sometimes he sees better than he hears.” Oh.
Tommy was one of those kids who was typically developing until he was about 13-14 months old. It wasn't completely an abrupt halt of development; it was more like he just got stuck. Being a new mother and a nurse, I was pretty sure something was happening, but friends and family were absolutely sure everything was fine. His pediatrician was listening and taking notes, but she wasn't ready to advise us to seek testing. Yet.
So, around 18 months of age our pediatrician wanted him tested through childfind. The group of people with childfind were fantastic, and caring, and encouraging. They were a wealth of knowledge and information. Because the range of typical is so wide, we tested Tommy again at two years of age, and then again around the two and a half year age. After that testing, he began speech therapy. Shortly after that, we were referred to the school system for more testing and then he was placed in special education preschool at age three.
Aside from getting through those initial first meetings to determine eligibility, and developing an individualized education plan (IEP), we had a good experience. We had to push for a few things, and outright use some key (my husband calls them buzzword alerts) phrases ("are you implying that you believe this does not qualify under the Individuals with Disabilities Act?") to get the point across that he was way behind on some key developmental milestones, and that he needed to start therapy and preschool right away. Once he started in the school system, we had IEP, eligibility, and triennial testing (even the three years he was home-schooled) throughout his educational career. I have so much gratitude for his speech therapists, his teachers, paraprofessionals, and case managers!
It's been a wild ride. I want to encourage the parents of those in the beginning stages of testing and diagnosis. Be patient. Keep notes and journals. Pay attention to what your kids are eating, and not eating. Find someone who has older "special needs" kids, and talk to them, make them your mentor. Listen. Listen hard. It takes time, for sure. Tommy did not get an autism diagnosis until he was 5 years old. We weren't even considering autism until he was over four years old. When Tommy started to put words together he started flapping, and making repetitive sounds and mouth movements. He spoke in a "foreign language" with Kiki, his imaginary friend. He stopped making eye contact - at least, that is when we realized he wasn't making a lot of eye contact. He had several things diagnosed prior to the autism, including OCD, anxiety, Tourette's, ADHD, and developmentally delayed. All of those are appropriate, and they all are common “co-morbidities” of Autism Spectrum Disorder.
So, Tommy got diagnosed on the edge of time when autism was still under-studied, and not very common. Autism was not even really talked about; I don't think it had an awareness day, and certainly not a whole month, although I may have been unaware of that at the time. Tommy missed out on some of the therapies that are especially beneficial for autistic kids because they were experimental, and not covered by insurance at the time. I'm not at all sad or bitter about it, but I do wonder if some of those things could have helped him. He did have amazing occupational therapy, though, and fantastic teachers, and really awesome speech therapists, and hands down the best psychologist and psychiatrist on the planet. Without a doubt, he would not be as high functioning as he is without his team of professionals!
Our beginning is just one out of millions, I know, and it's unique, because if you know a child with autism... well, then, you know a child with autism. They all look SO different. I just wanted to share our beginning. Throughout the month, I'll add more stories about life in the autism lane. I'll make sure to keep it upbeat, too! I don't do fake, but I totally believe in gratitude in all the things.
Ok, so I just wrote all that out to offer encouragement!! When you are in the beginning throes of doctors, therapists, educational and developmental testing, everything is so overwhelming. I think reading and researching are great and necessary, but I also think that the more stories you hear or read help to make the time more manageable, and real. It’s easier to relate, and find that you are part of a community. Personal stories, are the best:) and sometimes it helps to just know that you aren't alone- and that there is hope for the future. We've had a lot of periods of rapid development, and then a long stall, so it's helpful to not judge the day-to-day, but instead look year-to-year. Being able to hear other families’ struggles and successes, and being able to laugh (and/or cry) are so important! Celebrate the milestones! Be thankful for the child you have, even when it's been a hard day, or week, or month, or year.
Above all, though, don’t forget to celebrate you! Beginnings are usually hard, so celebrate the days you get to shower and use conditioner! Seriously! Mothering and fathering are not for the faint hearted, so take care of yourself, and love one another.