Today is an anniversary, but not the kind of anniversary one usually celebrates. Today, November 8, is the 7th anniversary of SB’s diagnosis of autism. SB has come SO far since then. He has made significantly more progress than the Developmental Pediatrician predicted he would on that gloomy day in 2006. Also significant is how far I have come as a parent. Seven years ago I was a depressed, emotional, miserable, incessant worrier who thought that nothing in my life would ever be happy again. Kind of selfish, really, since this diagnosis didn’t actually happen to me! Since then, I have become a confident and knowledgeable advocate for my children and sometimes even a giver of advice and comfort to other parents. I have made huge changes in my attitude, and in fact, my entire worldview. But it didn’t happen overnight.
I kept a journal during the period after SB’s diagnosis. I was pregnant and had gestational diabetes, and therefore I couldn’t turn to alcohol OR sugar to feed my depression, so I turned to writing. (And LOTS of bubble baths!) The journal is an ordinary-looking notebook full of deep darkness and despair. Reading through it last night, 7 years later, was sobering and confusing. I remember that time. I remember that sad, dazed, miserable woman who wrote those words. I remember how frustrating our life was then. But I don’t feel like I am the same person who scribbled all of that stuff down on paper. SB is certainly not the same person being described in the journal. Everything is so much different now. And better. Absolutely BETTER. I thought I would share with you a few quotes from the journal and explain how they reminded me how much progress SB and I have both made since then.
1 – Proof that I definitely needed Ambien: 11/19/06 – “Every single time I wake up in the night (which is a lot of times) it hits me again like a ton of bricks – Oh, God! We have an autistic child. It wasn’t a dream – this is really happening. And Oh, God! We’re also having another baby. Then I can’t get back to sleep.”
2 – Reminder that the beginning of an autism diagnosis is very time-consuming, but that it isn’t always like this: 11/20/06 – “I am also very busy with paperwork about him – Tricare, preschool, etc. Lots of forms to fill out and copies to give to this or that person. And taking him to the doctors takes a lot of time, too.”
3 – Proof that I definitely needed Prozac: 11/23/06 – “And getting through the day is hard. Taking my next breath is hard. Getting up off the couch is hard. Being with SB is hard, especially when I am alone with him, because I am reminded constantly about all the things he cannot do that he should be doing at his age. But somehow I keep taking breaths. Somehow, I keep getting out of bed and getting up off the couch. I really don’t know how, but I do.”
4 – Reminder how distant and solitary SB was at this age, and how much he’s changed since then. Now I actually refer to him as my Autistic Extrovert: 12/3/06 – “Is it always going to be like this? Is he always going to be frustrating? Is he ever going to want me in his life? As it is now, when you put him in his bed, he wants to be alone. If you try to read him a story, he cries. If you try to sing him to sleep, he pushes on you to make you leave the room. He doesn’t want his mother. He would rather be alone, and that makes me terribly sad.”
5 – More Prozac proof, I think, because the joy DID come back: 12/15/06 – “I feel like I’ve been cheated out of experiencing what parenting is supposed to be like. Children are supposed to be fun at SB’s age (21 months). They are supposed to be learning and experiencing life and sharing what they learn with their parents. They are supposed to give their parents joy. All I get from SB is anxiety, worry, and frustration. When will I get joy from him again?”
6 – Reminder that Christmas, and all holidays, have improved SO much: 12/23/06 – “…for a lot of the day he seemed very distant and disengaged. It is so hard to get him interested in anything – he just wants to wander from room to room and stare at the lights. It’s a little creepy and very sad. I am just so sad. Opening Christmas present was again very sad. SB just has no interest in any toys whatsoever. Charlie wanted to play SB’s favorite CD to keep him in the room with us, which worked, but I couldn’t interest him in opening anything. He just stared at the CD player the whole time we opened gifts. Will we ever be able to bring him out of this dazed state?”
7 – Reminder that toys and books have gotten so much better, and that he really is interested in other children now. (See above: Autistic Extrovert!): 12/24/06 – “We tried to interest him in toys, but we couldn’t seem to interest him in anything at all. No toy or book, new or old, would grab his attention. I just can’t express in words how sad it makes me feel that my child doesn’t know how to play. He doesn’t understand what to do with toys or with other children.”
8 – Reminder that SB’s attention span is so much better now: 12/30/06 – “SB sat at the art table for 10 whole minutes! He doesn’t do anything for that long! Normally no single task or activity lasts more than 1-2 minutes. And he was not strapped in – just sitting on the bench. He scribbled on plain paper with crayons.”
9 – Reminder that SB’s diet is better now: I can’t give you just one quote about this. Every single page of the journal discusses what SB did or did not eat that day. Why was I so obsessed about that? He was a terribly picky eater as a toddler, and it seemed to distress me at every meal. SB’s diet has expanded drastically in the last 7 years. Just last night I made a burrito bake casserole for dinner, and SB cleaned his plate with minimal complaining. (What are we having for dinner? Burrito bake casserole. Is that what *I’M* having? Yes. Do I *HAVE* to eat that? Yes. Sigh.) But there was no more arguing after that!
Of course there is other stuff in the journal that is NEVER going to see the internet. Dark, embarrassing, scary stuff. But that’s what a journal is for, I guess: to let out all the crazy, scary thoughts so that they don’t drive you mad. And no one ever has to see them if you don’t want them to.
So now I need to explain the meaning behind the “It Gets Better” title. About a year ago, I bought the latest album by the band Fun. and put it on my iPod to listen to when I work out. (I find the punctuation in their band name annoying, but am trying to honor the name they have chosen and use the period!) When I heard the song “It Gets Better,” I immediately applied it to my own life and thought about what a great theme song it would make for autism parents. Then I did a little research and learned that the song is actually an anthem for the support of gay rights, and the message is for homosexual teens and young adults: Coming out is hard, but it gets better. When I realized that it was someone else’s theme song, I let it go and stopped thinking about it.
Then last month, I heard the song again on my iPod during a run, and thought, “Why not?” Why can’t it be an anthem for more than one cause? Of course the gay rights movement is important, and it is certainly necessary to support young adults learning to embrace their homosexuality, but why can’t we autism parents use the song, too?
So today I celebrate this anniversary. I celebrate that this road is hard, but it gets easier the longer you travel it. I celebrate the changes in myself – that I am a more compassionate person, and a BETTER person, because of the experiences I’ve had these last 7 years. I celebrate the fabulous people that have come into our lives that we never would have met if we had never been put on this autism path. I celebrate both of my sons, their unique, quirky, brilliant little minds, and ALL of their successes, no matter how big or small.
I celebrate because it gets better.