It’s late at night and I am sitting in bed writing. I should be getting ready to call it a day and get to sleep, but my mind is not having it. Today was a typical day for me and my 9 year-old son Talan who has profound Apraxia, Autism, and severe developmental delays. Our day started at 6:30am and at FULL speed like every morning. There is no easing into our routine. At 6:30am, it is already chaos. Before I even have the chance to wipe away the cobwebs from my eyes or even get my blood circulating, Talan is up, asking for his dog Chip and repeating things over and over. He get’s frustrated quickly, and usually takes off his pajamas and whines. All morning. I get is talker (AAC device) to try to help him communicate his needs, but we end up at the same dead end. There is no rhyme or reason for the OCD type repeating or the whining. It’s just something that goes on each and every morning and usually ends up in some form of meltdown due to anxiety. I get him back on track by reading a book or doing a puzzle. Lately he is really into his new puzzles that help him spell words, so we get dressed and sit on the floor and do word puzzles. We eat breakfast, brush our teeth, and leave the house by 8:30am to start his day at ABA therapy where he stays for 3 hours a day, 4 days a week. I am so grateful for those 3 hours because it is literally the only time I get to myself, usually that time is only about 2 hours by the time his therapist and I chat and I get home and turn around to go back to pick him up. Now, I am not complaining, believe me, those 2 hours are still amazing!!
Today was a hard day. Not for any one particular reason, but for a bunch of reasons. As I sat looking over a handout given to me about pre-kindergarten readiness charts for reading, writing, and math; I was hit yet again with the reality that my 9 year-old son is at the level of a 3-4 year old. Even though he has made such HUGE gains, he is still significantly behind where he should be. How can this be? How did we get here? All day I felt like I was spinning on a hamster wheel just going and going and going…….
I usually don’t worry about where Talan is developmentally. I had to let that go, because it was eating me alive. It was sucking my joy and leaving me in a constant state of grief. Or maybe the truth is, that I DO worry about it all. It DOES bother me. It DOES break my heart over and over. I DO feel like I am in a constant state of grief. And maybe, just maybe, I have not let ANY of that shit go.
I am constantly reminded how far off we are. Constantly. Now, don’t get me wrong, there has been SO much progress. There are things to celebrate, and we do celebrate! I want you to know that there are so many things that I am thankful for and most of the time I am ok with where we are at. Today is not one of those days. It’s just not, and I can’t seem to get myself out if that space.
In a world full of social media posts and insta stories, it is hard to watch our friends and family and their kiddos thriving and moving on as they should be. Playing sports, making friends, hanging out, being a part of something. Belonging. Just being a kid. I see friends and other parents going out, getting dressed up, smiles on their faces, and going off for a night out or a weekend away without a care in the world. That is not our world at all. Our world is very different. It is isolating. It is lonely. It is filled with therapies and other appointments. It is tiring. It can be all consuming. I know many of you reading this will say “make the best of it” “it could be worse” “it’s not that bad” “you need to force yourself to go out”. And maybe all of that is true. But it is hard. I have friends who’s kids used to be where we are but have now outgrown their differences, and they seem to have forgotten what it’s like to be here. In the thick of it.
We are constantly walking up a hill, get to the top and think we have made it, and then right back down to the bottom again. There is no end. To say that it is exhausting doesn’t even cut it.
I am sure I will feel differently tomorrow after I have some time to sleep on it and dust myself off again like I always manage to do. But today I am not there. Today I am in the pit. I needed to get the thoughts out and this is where it took me.
For those of you in the thick of it. No matter what that means for you, it’s ok to be there and not feel ok about it. Let it be and just try again tomorrow. I am going to tell myself the same thing and try to get some much needed sleep. Wish me luck!