I’ve thought a lot over the last day about whether or not I would write about what we are going through. And in the end I reminded myself that I committed to providing our authentic truth. Maybe because I feel like I owe it to you. Maybe because saying it to you heals me in some way. Maybe because over the last few months I have learned that more often than not there is someone else going through the same thing, and they need to know they are not alone. For all of those reasons, and so many more, here is another piece of our story.
When I started writing this blog so many of the posts were full of hope and positivity and optimism. At that time we were in an amazing groove with Grayson’s treatment. He was engaging with his peers. He was taking positive strides towards independence (potty training, communication, etc.) We were balancing the mix of therapy and family time. We had a consistent and wonderful treatment team. All things considered, we were counting our many blessings. But in our life things can change quickly. And often without notice.
Around the beginning of July Grayson began to show signs of” sliding”; his progress seemed to regress. His extincted behaviors were returning. Yes, all of them. He was hitting, screaming, slamming doors and biting. The dynamic between Rowan and Grayson became more irritable than usual. In general, everyone was having a difficult time understanding and navigating Grayson’s emotions and behaviors. So we went into survival mode. Which is a mode we’ve come to know well. We know that when we are in survival mode that everyone is just doing their best to make it though the day. We remind ourselves to be more forgiving of ourselves and each other’s moments of imperfection. We try to learn from our mistakes. We try anything. Everything. We pray for the end. We pray there is an end. Sometimes these stints are short lived. This one is not.
About 3 weeks ago Grayson’s sleep pattern started to change significantly. He went from regularly sleeping 10+ hours a night to sometimes sleeping as few as 5 hours. He was fighting bedtime from 8pm to as late as 11pm. Then waking up for the day at 2:30am or 4am. And then the exhaustion set in and it only perpetuated the behaviors. We kept thinking “tonight he is just going to crash, I mean, how can he not?” And then we’d find ourselves awake with him again in the middle of the night. The exhaustion and the behaviors takes a toll on all of us. No one is the best version of them self under these conditions.
So in a moment of complete desperation (after a 2:30am wake up call that morning) I reached out to our (AMAZING) pediatrician. She confirmed my belief that this minimal amount of sleep was not ok. And she gave us the green light to try Melatonin. We were anxious as bedtime approached. We gave him his first dose in his milk. And he was honestly so tired that he could not even brush his teeth. He fell asleep by 8:02pm that night and slept until 7am. DEAR HEAVENLY LORD ABOVE!! He slept. We slept. I woke up feeling on top of the world. The next day his behaviors were minimal. Could this magical all-natural product have been the solution? We were hopeful when nights 2 and 3 went the same way. Night 4 was way less awesome.
He woke up at 2:30am but after 90 minutes he did go back to sleep. The next morning we could tell immediately that something was off. So much so that I knew I needed to work from home so that I could give him the focus he needed. It was a reminder that there is no such thing as a “quick fix” for autism. He struggled through his first hour of therapy. During his first break we played on computer, I typed words in giant green letters and he recited his sight words. He struggled again in the second hour of therapy. He came up for his second break and wanted to continue the computer. I looked down at my computer to find the word document and make it big and with no warning, no signs of anger or distress or sadness, Grayson drew his leg back and kicked me in the face. I instantly knew that I had to minimize my reaction. I stood and ran to the bathroom where I sobbed as quietly as possible into a towel, my face bulging in pain. Grayson could hear me. He started laughing and said “mommy’s crying”. And some how that moment was worse than anything that happened before that moment. Because in that moment I understood just how little Grayson was able to process the emotions of others and the way in which he is able to impact them.
Look, I’m not fragile. I’ve been hit and pushed. I’ve had things thrown at me. I’ve been bitten. I understand that it is the autism. And I know that absolutely no good comes out of me losing my cool. But I also know that I have to create a space for myself to emotionally process the things that are happening to me. Physically. And, emotionally. My face will heal. A few Tylenol and an extra coat of makeup and physically it’s a distant memory. But my heart will remember it a bit longer.
This story is in no way intended for you to look at Grayson or any children with autism any differently. This has always been a part of Grayson, you just maybe didn’t know it until now. My intention is simple; it is to remind your about the power of unconditional love. Because not even for one single second yesterday was I mad at Grayson. I was mad at myself for not better reading him emotions when he came upstairs. I was mad at my Dell computer for not saving faster so that I could open his document. I was mad that I’d so naively believed Melatonin could solve all of our problems (although, it is definitely helping. I was mad. But I was not mad at him. And that part takes work. It takes commitment and effort. And it takes a strong group of love and support around you. Whether you are the mom or dad or someone near by just wanting to help; unconditional love. It is stronger than any hit or kick I have encountered; and stronger than any that I will encounter in the future. He is my son. And I love him. Unconditionally.