Have you ever seen the meme that splits the world into two types of people?
The people who empty out their email inbox regularly and those that have 1,689 messages every single day. I’m the latter. Not proudly, but that’s me. Yesterday, I thought about trying to get a hold of it and get it all under control, particularly my work inbox. While perusing the emails I came across one from August 2014 (yes, I know, my inbox is ridiculous). It was a conversation between my boss and I about me needing to reduce my hours due to Brian’s needs. And one part stuck out to me:
He has become so anxious/OCD this year that all ten of his fingers are raw from chewing. He asks for bandaids each day as they hurt but I can’t get him to stop. His constipation and anxiety around the bathroom quadrupled this past year where we are now at the point where I feel like I’m potty training all over again but it’s 10x worse than it was the first time around. I’m in and out of the bathroom with him every 15 minutes. His self-injurious behaviors keep spiking and he has bite marks and bruises to prove it.
Coincidentally, in my Facebook memories this very same day I saw a post celebrating Brian having a week without self-injurious behaviors from November 2013. It was a big milestone at the time because prior to that he was having about a dozen incidences a day.
Seeing both of these memories in one single day really made me reflect and think about where we are now.
I have a horrible habit (yes, the email inbox isn’t my only bad habit) of only writing when things are bad. When we are struggling and I have so many feelings built up that I feel like I may explode. So I write. It’s therapeutic for me. And when things are going good, I don’t have the urge to write as much. By only writing during the lows, I think I don’t do our life justice, because the majority of the time it’s really, really good.
For instance, now we don’t really celebrate days without self-injurious behaviors because they are now the norm! An isolated head-bang or hand-bite still happen now and then and they often make us scratch our heads as we think about what the antecedent was. They are the exception, not the rule now.
His bathroom anxiety has cleared up immensely. Sure, there are still pieces of it that we’re addressing with in-home support. But there are no tears and crying and constipation and pain anymore. It’s a world of difference.
I can’t remember the last time he asked for bandaids for his sore, bleeding fingers. We’ll occasionally catch him chewing his nails, but the skin for the most part, has been in the clear.
His communication is increasing both verbally and on his AAC device. He has much less resistance to using his communication device. He can tell you his name, his family member’s names, my phone number, and where he lives. All of the important pieces of information for him to be safe.
He is tolerating leaving the house easier. He is having way less tantrums. He sleeps through the night consistently. He is performing self-care skills independently. He’s beginning to do chores by himself. He is using a calculator and learning about money.
He is laughing. He is expanding his humor. He is happy and loving life. He is more engaged and connected to those around him.
I’m often connected to families who are new to the autism diagnosis. And after a few converstions, they’ll often ask me, “Does it get easier?”. Each child on the spectrum is different and their outcomes will all be different as well. It’s not something I can answer with confidence.
Two or three years ago, I probably would’ve been pessimistic and only been able to reflect upon that moment. I would’ve said that it keeps getting harder. It’s hard when he’s too big to scoop up and calm when he’s having a meltdown. It’s hard seeing the gap widen more and more between him and his peers. It’s hard when adulthood is looming over your head.
But today, today I can look at our journey with optimism. There will be rough days and sometimes those days will spread into months. But there will be moments of light in there. And you need to focus on that light. That is what will give you strength to keep on going through sleepless nights and seeing your babies in pain. You have to keep fighting and pushing through those rough patches. And then there will be moments of easy. Easier than it has ever been before. Be in those moments and never take them for granted. Let them carry more weight than the bad days. They are what matter. I promise there will be moments, sometimes days, if you’re lucky- months, that it will get easier. Hold on to those.