In honor of my soon-to-be-broken resolution to share more on the blog--and because I have yet to write something similar for THIS year-- here's something I wrote last January. I hope you enjoy it.
We spent the past four hours or so working on the boys' play room. Nathan dumped a few crates of books and toys one day and we were too busy to clean it up, so we closed the room and have basically been using it as storage for 4-5 months. As we were cleaning up other rooms, we'd gather a basket or bag of toys or a dress-up piece and just toss it in to be dealt with later. The room has a 3/4 door, so for a while Nathan made it a game to toss toys in then call for us to get them. We quickly tired of the game and instead told him it was gone until Later.
Well, it's 2014. One of our resolutions this year is that it is now officially Later. From the time the twins were born, we have been living in constant emergency mode. We are always rushing around putting out fires, dealing with the absolute necessities of the moment. So many things--our health, our marriage, household chores, pretty much anything that wasn't an emergency--were put off until Later so that we could deal with whatever crisis was before us. This year, we are going to deal with many of the things we've put off. While we are mostly focused on the emotional aspects of the resolution, there are also some physical things, like sorting and organizing, that fall under the heading of 'things we put off until Later'. Later is now.
So into this disaster zone we went, bins and brooms and trash bags in hand. John and I worked quickly for a while. The boys were excited to see toys they hadn't seen in a bit, and Nathan especially kept running in to collect favorites (the princess Leia plus angry bird he had tossed over at some point was a particular hit--I had forgotten he had it, but he proudly told me he earned it by completing his final potty chart. He walked away repeating the conversation from that day word for word, including a very credible parody of my voice pronouncing him a Big Boy and 'fishully potty tained.' So many things I have forgotten remain like a video recording in his little head).
As we cleaned and sorted and chose toys to pass on to others, John and I became more and more excited. Into the donation bin went the toddler toys, the ones that not long ago I thought he might play with forever. In went the preschool toys, designed to teach colors and letters and basic patterns--somehow, he has mastered those skills in the past year. In went the toys that were actually therapy tools--large wooden beads and shoestrings designed to teach fine motor control that once seemed impossible for him and is now a mastered skill. In went the fabric books that I once thought would be the only books he would own because he couldn't eat them. In went the infant and toddler dolls and blankies with different textures, chosen to get him accustomed to something other than cotton touching his skin. In went the board books of simple emotions--though I couldn't seem to part with the one with the faces, the one I watched him pour over for hours, reading the emotion listed and trying desperately to copy the expression that went with that emotion. At the time, I remember the heart wrenching agony of knowing that my child was trying to learn to 'act' happy or 'act' sad because it didn't come naturally. Only now, in hindsight, do I see the beauty of a child working feverishly to learn how to express emotions others take for granted.
I looked at John and saw the reflection of my own excitement in his eyes as he gathered up his shooting headphones--loaned to Nicky a year ago because his auditory processing skills were so poor that he couldn't stand noise of any kind. Less than a year later, his hands over his ears for the occasional loud noise is all he needs in most situations. Into the trash went the leftovers of the fake money we bought for Victor--money is an abstract concept to him, so we tried everything we could think of for almost a year before something 'clicked'. Once it did, he never looked back.
I stood in this room with my husband working on our third or fourth 'later' project so far, and I felt my heart swell like the Grinch in the story. Some parents--some who are reading this even--have never felt that joy of knowing their child has progressed beyond the developmental stages my children seem to be breezing through over the past couple of years. Nathan's progress is the most dramatic, but Nicky and Victor have certainly made their own progress as well. Some parents will never know that joy. As much as they love their child, their heart tightens a bit reading this story. As I once told a young mother who was saying her baby was growing up to fast, the only thing worse than knowing how quickly your child is developing is knowing how very, very slowly he is developing. Having known hat sadness, the joy of watching their progress is so much sweeter.
And that's when I realized something. There are hundreds of thousands of parents in the world who will never know the joy of their child having achieved a milestone because they have never known the pain and fear of them missing one. I was that parent--Victor didn't walk until 13.5 months, but he was already talking in sentences by then. I cant' tell you when he learned his colors or began to follow two step directions or mimicked speech for the first time because those were just things he did. It wasn't brilliant or amazing, it was just a child growing. I still remember the first time I told Nathan to repeat something I said and he actually repeated it. I don't remember the words, but I remember the feeling. I remember the all encompassing joy and the satisfaction that we hadn't given up on him, and even though it took years longer than expected he was now mimicking us. And I remember the ridiculous number of things John and I both asked him to repeat over the next six months just to hear him repeat them.
Autism steals so much, especially of the things you thought you'd have. Dreams of dance recitals and karate tournaments often turn into therapy appointments and specialist referrals. I couldn't be a crying mom on the twins' first day of kindergarten--I was busy fighting to make sure the school understood Nathan's BMP and that he would be in the kindergarten room with his class rather than in the autism room. I've read that 85% of marriages with a child on the spectrum end in divorce, and I wouldn't be surprised to find out that was a low estimate: my marriage, my life revolves around doctors and therapies and routines and random sleepless nights.
And autism. I keep saying I want a project, a part time job, a THING that has nothing to do with autism, but I doubt I'll have it Autism creeps into my conversations at the post office and my trips to the craft store. It is as much a part of my life as air--and as difficult to escape.
But there are gifts. I've met amazing people--specialist, teachers, therapist, bloggers, other parents. People who lobby the legislature, fund raise for autism associations, write books, do art projects, volunteer. People who change the world and people who just live as joyfully as possible. I've learned so much about myself, people and priorities. I see beauty in the world that I never would have seen otherwise--the beauty of the wind on your face, the song of a bird, the first dandelion in the spring and the last in the fall.
And I know the unadulterated joy of handing a six year old a toy labeled 'for ages six and up' and being conscious of how very hard we have all worked to make that possible.
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