Yes, I still exist. It’s been a long time again- I find myself having a hard time mustering up the energy and hutzpah to write lately. I am tired, emotionally and physically. I am discouraged. There is no specific reason; no one incident I can point to- all I can say is that battle fatigue is a very real concept in the world of autism. The beginning of the school year is especially hard, with all of the back to school activities, trying to get organized, etc. My husband just changed jobs, which is a wonderful thing, but the change in routine affects all of us. Especially the boys.
I have been living in this world for about 4 years now- since Jack’s 3 year old preschool year. That’s not very long, but if I am being honest it feels like an eternity. More and more lately I find myself wondering how I am going to keep going. Everything is just so hard. Name one thing, and I can tell you how autism makes it hard. I was late getting to the bus today to get Jack, and I was so freaking panicked! Today he was ok, but under usual circumstances, it would have guaranteed a meltdown. I am programmed to panic. To adhere to Jack’s expectations; to prevent the outbursts. Same goes with Nathan, except that I have to push through many of his meltdowns, as they are over things like sitting on the potty. Maybe I should just stop caring so much about the meltdowns, stop worrying so much about my kids being distressed- I just find it impossible to do. Because I love them so much.
Here’s an example of autism, making something joyful very difficult:
This weekend we went on an ordinary day trip to my sister’s for my godson’s baptism. Only there is no ordinary for us. I constantly find myself strategizing on how I can keep the stressors to a minimum, not only to try to keep my kids comfortable to the extent that that is possible, but to “blend in” at family events. Ha. And yes this is normal with small children to an extent, but my kids are 7 and almost 5- we should be past this. So we had a two hour drive each way, a catholic mass to get through, then a baptism ceremony, and then a party. Many times we would just say no, but this was so important to me- this was mandatory, even for my husband after his first week at a new job with a long commute.
Navigating these activities with two boys on the spectrum. There are just landmines everywhere you try to step- things that even after 4 years I cannot anticipate. I knew that Jack would have a hard time with the music in mass- I didn’t think about the fact that the music would make him sad, make him cry, because he is so reliant on the tone to tell him what emotion is appropriate. Hymns just sound sad- so he started crying about never having a birthday? Umm, yeah. And his volume perception is nonexistent- so everyone hears. He talked his way through mass, stimmed his way through mass- we had a bitchy lady staring at us (what else is new?)- Except this lady was the one who did the offering of the gifts, and she was a Eucharistic minister. I’ve got news for you lady- I’m confident that when Jesus said let the little children come to me, nowhere in there did he say except the ones who are noisy (even though they are not being naughty). I abhor people who claim to be so strong in their faith, who then turn around and reveal themselves to be the most judgmental peas in the pod. God loves my children and they had every right to be in that church, stimming and all. I was so upset about this that it took every ounce of restraint I had to keep me from literally going over to her and letting her know that she was staring rudely at two children with autism, who were doing THEIR very best, and that she should do her best to keep the ogling to a minimum as it was disturbing ME. I didn’t do it, but what I did do was probably even worse. I caved to the pressure of the staring, the feeling of sticking out like a sore thumb. Nate was not crying, not shouting- just making his usual sounds and flapping. Still, I asked John to take him out. And in doing so, I set us up for a long, severe meltdown in the process. I am estimating that it took at least an hour to calm him down after we removed him from the church. Because daddy took him to the car (totally understandable), and in his little routinized brain, it was time to go home, because that’s what you do. Only they sat there- and his frustration just built and built, and reached a crescendo when I in a well- meaning gesture went outside to check on them between mass and the baptism. Because here came mommy and Jack- surely NOW we were leaving? Poor little boy. And yet, on this day, when I just wanted to enjoy being my precious nephew’s godmother, I resented the hell out of this (sorry for the language). Who else has to think it through before they walk to their car like this- of what the consequences could be?
Family members suggested that I might want to tell the priest that Jack is on the spectrum before the baptism, as his perseveration was reaching a fever pitch at that point, and even the act of me walking away from my 7 year old to go to the baptismal fount was enough to cause a meltdown, but I was a stubborn ahem person and just didn’t want to. For once I just wanted to pretend- because Jack is high functioning right? Everyone always tells me that no one would pick him out and say he has autism until they were around him for a while. Well, when Jack started loudly complaining I finally leaned over to the priest and just whispered “he is on the spectrum”. The priest said “oh I had figured that one out”. Fabulous. Really, the awareness is fabulous. It still pissed me off at this point. “Everyone” was wrong- his behaviors do stick out. By the end of the ceremony he was throwing himself on the ground in despair because the priest said he was “taking the baby to Mary” and Jack assumed he was taking him away forever. He was sobbing “but I just met him!!!” My boy is sweet to the core, that I never doubt.
Notice that never in this story am I calling either of the boys “naughty”. I don’t believe that either of them was intentionally doing any of this to be bad. I believe they were both overwhelmed by the large amount of change and uncertainty- the very things that so often keep us home. Some days you just have to walk through it and pray that you will make it out the other side. I tried to keep my sense of humor throughout the day, and I think the only people I expressed my frustrations to were my mom and John, so that was good.
But I am just so tired. And I am so tired of people telling me it will get easier, because they are wrong. I am tired of people telling me they “don’t even notice” the boys’ behaviors because the bottom line is that autism affects every single move I make every single day. And I notice their behaviors, and more importantly, their lives are impacted at every turn by the sensory issues they encounter. No, Nate was not snuggling up on the chair cutely while on the deck like you thought, he was trying to get in position to hump it. I stopped him, so none of you knew. And that’s how it always is.
See, I have nothing nice to say…oh well.