This is not a place where I want to vent. This is not a place to write about the hard moments, the power struggles, the meltdowns, and the frustrations that come as a result of parenting an autistic child. It’s not about that. I don’t ever want to feel like anything I’ve written is something that would embarrass Jake or use his autism as fodder to make me sound like a better parent. I don’t want it to be a place where I exploit his innocence, struggles, or autism to gain some sort of kick or self-righteous feeling.
I try to censor myself and I have my husband proofread all of my blog entries before I post them. The internet is everlasting, after all.
That being said, there are some things that I feel like I can share.
Jake does better in school when I am involved. I have been going to his class to read with a small group (always including Jake) twice a week since late September. His teacher and I have both noticed that he is more relaxed, less anxious, and has better days overall when I stop in. I love coming to his class. I love seeing him in his desk, getting a hug and a kiss in the middle of my day, and knowing that I am helping him feel better and have a more successful day.
Jake does better with field trips when I participate. Our school does not have access to a school bus, so parents help drive students for field trips, and I have gone on several this year. While field trips are fun, exciting, and awesome, Jake also finds them overwhelming, unfamiliar and unpredictable. If I am there with him, I can literally hold his hand. I am reassuring, comfortable, and familiar. I can talk him through what to expect and provide security and safety when things are unexpected. I don’t feel like I am coddling him, overprotecting him, or hovering, even though it could be seen that way. I am praying that my investment into his security and confidence now will pay off later in life.
Jake has not had many fevers at all since school started in September. I believe, strongly, that a large part of the reason is that I am so focused on his needs this year. I am keeping him home for afternoons when I see he is getting worn out. I am putting more time into preventing meltdowns and really stressful situations for him. I feel like I am working on the preventative rather than reactive side of things this year.
This year Jake has expressed that he wants to go to the mall and see Santa, that he wants to tell him what he wants for Christmas and he wants a picture taken. I am so amazed. He is six years old. For six Christmases, I have tried to get him to go and to get a picture. There was a commercial last year for Canadian Tire where a child used his iPad to FaceTime Santa because getting to the mall was so hard and created so much stress. I cried several times when I saw the commercial. It was so beautiful, so lovely, and I could so relate. I gave up and didn’t even attempt it last year.
So this year, I am going to pull him out of school early one afternoon, to attempt to go at a quiet time in the mall. I am going to practice with him, show him videos of other kids going to see Santa. I am going to be patient with him, watch at the mall to see some other kids go first. Then, if he is okay, we will get in line. We will do it, if he wants to. And if he doesn’t end up getting the picture and telling him what he wants, we are going to bring along the list and an envelope and mail it. No stress. No pressure.
Except that maintaining this level of anticipation of possible disaster is hard. Always looking for possible meltdowns, always checking to make sure he is healthy, not too tired, always comparing what I would like to do today with what Jake needs me to do is a sacrifice. It’s not too hard. I’m not wishing for anything different. But it is a sacrifice.
I cannot plan an entire week in advance because if Jake is overloaded, plans get canceled. In our family, someone is sick or burned out or there is a crisis every two weeks. I cannot plan to do things after school if, in two days, we will have other plans. That is too much for us. I cannot take Aiden to a play date on a day that I have promised Jake I will be in his class to read. That would throw off his expectations and the pattern we have built, creating stress and anxiety for him, leading to meltdowns at school and after school, and more stress on me.
I am tired. I am not ironing shirts for my husband to wear. I am not finding a fun place for our Elf on the Shelf. I am procrastinating, and I will give up sleep in order to get those things done as well. I give up sleep, I give up time with Aiden and Penny. I give up time with my husband, and I give up time for myself, and then I try to get caught up and give each of us as much meaningful love as I have left. We all sacrifice. It’s hard to read that and hear the way it sounds. I don’t mean that we are suffering or that it is terrible. It is a choice that I am making, consciously, and I believe it is a good choice. I am giving what I believe I need to, and I can see that, as a result, we are all calmer and happier, and things are going well.
This is just a small list of some of the trade offs that we are making daily. There are so many things. I cook food that Jake will eat, I make up songs at night describing the events of the Star Wars original trilogy so that he will not be surprised when he watches them. I am tired, but he is happy, and that makes me happy. Right now we are all feeling exhausted and are looking forward to the Christmas break. I am looking forward to it with joyful anticipation, and also the knowledge that spending more time with all five of us in our small house will be extra noisy, I will not get anything accomplished, and I will have few breaks to rest alone.
I guess it’s just never what I would have thought, and I don’t know if or when that will change. I am getting into a good groove, and I am realizing how much love, effort, and work I need to put into Jake. It is no small thing but it is making a huge difference.