I am going to get real for a minute, and, to be honest, it may make some of you uncomfortable. I am not trying to make you uncomfortable and I am not playing the blame game, but this is a reality I, and all the other special needs parents in the world, face, and it needs to be shared so maybe, just maybe we will feel a little less broke.
This past week I had the opportunity to go on vacation to my parents cottage to celebrate the 4th. I was staying the entire 7 days while Alex was leaving for 2 to go back home, work, and come back up. It was going well and we were doing just fine…until it came time to say goodbye to Alex. I started to unravel.
I had 11 other people there to help me if I needed it, but I still felt so alone. Everyone was willing to pitch in and were even instructed to in the family meeting my mom held when I started to unravel, but that takes instruction and explanation, and a kid actually listening to someone else. It helped but I couldn’t be off duty. I have to have CONSTANT supervision of Nolan. Every time he was alone, he was wandering, climbing, walking towards the lake, eating a row of Oreos. It was hard, and it felt unfair. My nephew is 6 weeks younger than Nolan and he didn’t need that at all, Stella either. Nap time would come and they would go rest and everyone would get to go take a break and here I was watching over Nolan.
Alex came back and knowing he is in the trenches with me most the time, he doesn’t take explaining to. He knows how to fall into place, split duties, calm the inconsolable, get him to look at you and listen to you. He is a rock star Autism Dad.
My family is doing the absolute best they can explaining to my nephew that Nolan is different and his brain just works different. Nolan ran around yelling like he usually does and my nephew pointed it out. Grandma reminded him his brain is different and that is what it needs to work best. He then asked grandma, “well how old is he?” Grandma explained he is the same age as him, his brain just learned and needed different things. My nephew then asked, “so does he have a baby brain?” Now guys, he is 3, he is trying to learn about the world, my mom and his parents are going out of their way to explain the world to him in ways he can explain. This situation was handled with the utmost care and respect for all those involved, but it stung.
Comparing is not good for anyone, but it is really hard not to do when you see 2 boys 6 weeks apart and they could.not.be.more.different. At home we get to be in our bubble. I can work with Nolan, see the small inches towards progress, I can help him learn and grow. When we get in a group situation, the place we are at and the place we should be to be in a regular classroom are drastically different and that is presented right in front of you daily. I don’t want to hide Nolan, I am proud of him, but in a group or with Neuro Typical (NT) peers it is right there in our face saying that is what you are missing out on, that is how far we are behind, that is our goal but not quite where we can get yet. As they get older and more and more out of the toddler years of everyone develops differently, they get into the preschool and school age group of by this age/grade they should know…..we go from everyone learns at their own rate to we have to get as close to point B as we can by date.
A couple days into our trip, I got the idea to give him rest time in a room alone with his favorite show because I needed the break as much as he did. 2 days in a row, he pooped his pants at that time. We re-evaluated and had him sit on the potty while watching his favorite show. He went! I was so excited. Then Daddy when with the boys for target practice in the back 40, Stella and my nephew took a nap, and I read a book. I went to check on him and he pooped his pants and got it on the bed. I felt so angry. Not at Nolan, he is still learning but I just felt mad. THIS IS WHY I DON’T TAKE BREAKS! I marched him to the toilet, I threw the dirty bedding on the deck–and all the boys were pulling in–returning from target practice. I am mad. I am stomping around, slamming doors, just trying to get frustration out. It obviously made everyone there uncomfortable, but I didn’t care.
I broke. I could not help but fall into a poor me, this is so hard, nobody understands how hard this is, yes I am mad so I am going to be mad. I went from mad to sad and just sobbed. I am so tired of having to always be on my game. I am tired of having everyone say, “if anyone can handle this it is you,” I am tired. I am not talking I went to bed at 11:30, Nolan got up at midnight and didn’t go back to sleep until 4, and then Stella got up at 6:45 while Alex is gone tired (yes that happened daddy’s first night gone), but just emotionally exhausted. So tired of having to hold it together, having to always have the answers, always be calm, be ok with being behind, being ok with all this.
Then we had visitors show up. I had to go wash up, put on my make up again, get Stella up from her nap and pretend all was good again. I always have to put on my makeup, smile and keep going. I can do it, I have been doing it, but sometimes I just break. I can only hold things together for so long before I lose all the pieces and have to pick them up, put them together, and keep trucking.
We have a camping trip with friends planned in less than 2 weeks. I already have the anxiety of joining 4 couples with 10 kids 5 and under and having to by hyper-vigilant CONSTANTLY. I will have to accept this just isn’t where we are and we aren’t going to get there today. I have to put on my make up, pull myself together and keep trucking. I am TERRIFIED that being in a group of children for that many days I am going to break again. I don’t even feel like I have pulled all the pieces together yet how am I going to do this again? But Nolan needs me to, Alex needs me to, Stella needs me to. I need to, in the wise and amazing words of my amazing husband and ausome autism dad, “Own it, don’t hide from it. Take it head on. Prepare best you can. Be flexible. It will be ok.”
All you special needs parents out there– we break. It happens. It is ok that it happens. It is how we handle it and move on and keep working for our kids that matters. It is ok to cry, it is ok to hate situations sometimes, it is ok. We will find the strength for our kids, from our kids.
NT parents out there– We break. We try hard to have all our shit together but sometimes we just can’t today. We try not to make you uncomfortable but we sometimes hit a breaking point. We don’t blame you, we don’t want to avoid you, we just get overwhelmed and appreciate your patience as we pick up the pieces and start again. It can get awkward a grown woman throwing around soiled bedding and slamming doors and then sobbing on the dock, we are just as embarrassed as you are uncomfortable, but we will do our best to pull ourselves together and move on.