Sorry that I've been MIA. Between our recovery from Disney and Hurricane Irene, I haven't had much time for blogging.
And, we've been getting ready to go back go school, which brings me to my reason for this post. I just went through my yearly back-to-school IEP prep with 4A. While that prep itself is now quite simplistic, the emotions that it delves up are always a little jarring for me.
4A has an IEP (individualized education plan) because of her autism. In a nutshell, the IDEA (Individuals with Disabilities in Education Act) provides that any child with a disability that substantially impairs her learning is entitled to individualized education.
For 4A, this means lots of behavioral supports, like placement with a teacher who uses a class-wide behavioral system, seating near the teacher, an individual behavioral system to travel with her to specials and areas that don't use her class wide behavioral system, checklists for starting work, timers, visual cues, etc. So, even though the IEP lists these supports, the IEP goes into no detail as go how or why they're used. As such, each year, I promise to get together with her incoming teacher before the start of the school year to prepare her for what she's getting with 4A. It always seems that we've ironed out all of the kinks by fourth quarter, and then we have to start all over again. I try to fill the new teacher on where we left off last year, where I suspect we'll have trouble this year, and any changes to the behavioral plan over the summer. I also really like the new teacher and special educator to know that we consider 4A and our struggles and joys with her an open book; I find that this meeting really goes a long way towards opening candid communication with the school team.
Every time I have this meeting, it takes me back down memory lane. To a time when 4A was essentially asked to leave her preschool, to a day when her docs thought she may not attend a mainstream school, to a time when I hated being her mother. To be clear, I've always loved her, but there were big periods of time where I didn't like her or my job in being her parent. Back then, it all seemed really hard, confusing, and downright unfair. I worked my ass off in therapy for a few years to get square with being her mom, and her docs and her medicine have made her autism extremely easy to manage now, but this time of year always harkens me back to that dark, bleak time.
If you have a child with autism or one that you suspect has autism, I know where you are. It is true what they say...that being a parent of a child with autism is hard, that you come to terms with autism in stages, and that it will get easier. But, in those early moments, it's terrifying, depressing, and sad. I remember. I empathize.
The stage of the journey that we're in now, some six years later, is peaceful, funny, and almost joyful. I am content with who she is, who I am as her mom, how and why we got here, and my role in her autism and treatment. I'm also extremely proud of her and eternally grateful that I got her.
This contentment and peace did not come easily or quietly, my friend. I can't tell you how many times I was afraid that we wouldn't make it (her, myself, and my marriage), how many nights I cried myself to sleep and told myself that if I just tried harder tomorrow that things would be different. I also can't tell you how many times and how intensely I felt like I was doing something wrong, that I was to blame for her behavior and struggles.
Having typical children after her helped a lot. Counseling helped a lot. A very thorough and strong support team of docs helped a lot. My parents helped a lot. My faith helped a lot. Working through it all with my husband helped a lot.
I can't tell you what will work for you, but I can tell you that you should try everything you can think of, read about, or have offered to you. Trust your gut. Be okay with being mad. Swallow your pride and take a break when it's offered. Learn to ignore the stares in the grocery store. Affirm for yourself that YOU know your child and that something IS wrong. Don't let people, even those in your family or those that love you or those that mean well, dissuade you from what you know to be the truth. Autism is not a bandwagon or a excuse to do a shitty job as a parent. I'll tell you this...from a behavioral standpoint, I do a much, MUCH shittier job with my typical children than I do my spectrum one, and that shittiness always turns out a better product. No parents on earth are more consistent, patient, and calm than parents of spectrum kids. I once had someone who I love and respect a lot tell me that 4A's problem wasn't autism but rather that I didn't make her do enough for herself. How I prayed that it really was that easy. I kept hoping I'd find someone who would tell me what a moron I was as a parent and how to do things the "right" way so that this would stop happening. This is not something you did or didn't do. This is autism. Welcome to the "club."
I don't know how or why kids get autism. I don't know how vaccines play a role. I don't know why the numbers of kids on the spectrum are so high right now. I do know that my child has autism and what our journey has been. That journey will be different for you.
You will make it. Things will get easier. You will find the right doctor...not the one who makes your child "stop" (how HARD I looked for THAT doc) but the one who helps you help your child manage her autism. You will learn to like that child. God willing, you will be able to look at the presence of autism in your life as a gift. I certainly do...now.