I couldn’t share this picture until now. It was Caleb’s first day of Kindergarten, a day we were not celebrating because of how painful it was. I was desperately worried about Caleb, being pushed into this situation a month after being in another classroom with his close friends, to being in a classroom twice the size and not knowing anyone.
I’ve been reflecting about this past year since his diagnosis. It feels like a lifetime ago, and yet it flew by. It was a traumatic year, so my memories are already blurry and faded. I am struck by the nagging feeling that I need to remember it, to process it all. I have to take something from it, make it make sense and have meaning, so it’s not just something we survived. I want to walk into the pain, feel it, and let it teach me something. I’m not afraid of the pain for myself anymore, but I admit I still fear his pain. I will do all I can to set him up for the best future possible, but I must accept that I cannot take away the pain or struggles he will face.
We got the diagnosis right before this school year started and have grieved what this all means for him, with each new event since then. From being asked to leave the school he’d been at since toddlerhood a month into the school year… to hearing of his behavior issues in school… to meetings with teachers… to calls and emails home…to working with an ABA therapist… to continuously developing new strategies and procedures to help him function in school…to helplessly watching him struggle and fail for 12 weeks in a general education class…to IEP (Individualized Education Plan) meetings… to moving to a special ed class in December… to thinking all was well, then getting more calls about his behaviors at school and after school… to BIP (Behavior Intervention Plan) meetings… to hearing that they don’t have a good option for him next year… to not knowing where he’ll go and what will happen for weeks… then finding out we need to go to another new school next year.
I’ve done a lot of crying in the car.
I feel like the wind gets knocked out of me as soon as I catch my breath. Again and again with each new thing. I’m scrambling to understand and process it all, feeling helpless and afraid for his future, and trying to accept this new normal. Caleb isn’t able to be in general education yet, but he also doesn’t fit well in more severe special needs classes, either. It is both the curse and blessing of this “in-between” place he’s in. It’s harder to find appropriate services.
School was so much harder for him than we anticipated. He goes through good seasons, which I totally celebrate and am grateful for, but it also makes the calls and bad seasons more difficult, partially because I don’t think I really wanted to fully accept that he’s autistic. I mean, I KNOW he is, but in my heart I didn’t want to see him that way. I’ve come to realize that that’s not a good thing.
Caleb is Autistic. That means that almost every single aspect of his life will require more from him and from us. On his first day of 1st grade, Caleb will have been to 3 schools, and in 4 different classrooms. Because of how everything went down this year, we didn’t even get to celebrate Kindergarten. We had him in Junior Kindergarten because we wanted him to be older (his birthday is July 1st), but when we had to quickly scramble a month after school started to find a place for him to go, the best option seemed to be our public school since they have a great team and offered many classroom options. The problem is, we had to enroll him as a Kindergartener. I asked about holding him back and having him repeat Kindergarten and it seemed like it wouldn’t be a big deal. (I now know that holding a child back for anything other than academic reasons is nearly impossible). So, we enrolled him thinking that this year would be practice and I could feel my feelings and celebrate him being in elementary school next year.
I still can’t believe he’ll be in first grade next year. It’s all a little surreal, since this wasn’t our plan (but this is a feeling we’ll have to get used to). I still believe it would be better for him to be older, but there doesn’t seem to be much else we can do at this present moment. Maybe he can repeat the grade when he transitions into general education classes, but it may not be what’s best for him at that point. We’ll just need to take it one year at a time for now. I only want what’s best for Caleb. My most consistent prayer is that the Lord will reveal that to us as we go on this journey. He’s been faithful so far.
This new school does seem really incredible. Lord, I wish it weren’t so far away, but I will drive for over an hour every morning if it helps Caleb. He will be in an autism class, and it makes me happy to know that this class will be the first big step in helping him understand and accept who he is, exactly as he is.
When I view Autism as a part of his identity and how his brain is wired, I can actually love him better. When I remember he is Autistic, I celebrate his victories all the more because I’m not forgetting how much harder he had to work for them. “A normal day” requires so much more from him. When people tell me, “he doesn’t seem autistic”, I have to remind them (and myself) how hard he has to work for that. I chose not to be upset about it anymore, because I know people mean well. They also are not seeing what we see at home and school.
And conversely, when I see him as Autistic, I remember to have more grace and patience when he struggles/melts down/hurts us/or has a terrible day at school. It took long enough, but I’m getting a little better at anticipating his struggles so I’m not always taken by surprise.
Our healing largely depends on the story we believe about our suffering. Was this hell something we were able to learn something about ourselves through? Was it something that made us better? Or was it just this terrible thing?
I am telling myself a story every day. I am believing a narrative that I myself set with my thoughts. My story is that this has made me a better mom, a better friend, and a better therapist. I have been forced to grow and challenge myself in ways I never knew I would need to. I’m better about setting boundaries, sticking up for myself, and not letting other people’s opinions bother me. I’ve learned how to take care of myself better, not waste my energy worrying about things I can do nothing about, or feel the need to compare myself to any other mom. There’s not much room for the unimportant things, and it helps me focus on the big picture. I appreciate the simple pleasures of holding my boy’s hands, talking to them, playing games, and reading because time goes by so quickly and they will want me less and less. I have to soak it all in.
The last stage of grief is acceptance. I can’t say I’m in a place where I “accept” his diagnosis and honestly, that’s not really my goal. I accept him. When we first found out, I said stuff like, “Autism is not who Caleb is, it’s what he struggles with.” “He has autism, he’s not ‘Autistic'”. Then I started reading material written by Autistics and realized that most of them self-identify as Autistic. They want others to see them that way because it helps foster understanding, grace, and doesn’t force them to ACT like everyone else to make other people more comfortable. It’s no longer my goal to have Caleb seem as “normal” as possible for fear of other people’s reactions. It is my goal to help him love himself and accept his differences. Then, I endeavor to help him learn the skills and resilience he needs to deal with those who don’t understand him and face the challenges ahead.
Pain has a way of refining us when we let it in. When we don’t waste all our energy pushing it down and ignoring it, we can let it teach us something. I trust that the same will be true for Caleb’s pain. His resilience, kindness, integrity, and joy will depend on whether or not I allow him to actually struggle and fail, and help teach him how to deal with it.
Autism is not bad, it’s just different. His brain is different and that is ok. He is fearfully and wonderfully made. I’ll never stop figuring out how to accept WHO he is. All the time. Every moment. Every time I don’t understand. Every time he says and does the worst thing he can think of in the moment. Every time he’s pushing me away. Every time he says and does things against what we’ve so carefully tried to teach him. Every time I’m getting yet another call from the school. Am I able to separate his behaviors from who he is and accept him in spite of them?
I’m getting closer, and I count that as a victory. Progress, not perfection. Having more knowledge and understanding about Caleb’s challenges have helped me accept HIM better. Understanding helps us all. Understanding someone is the difference getting angry at the person who was rude vs. knowing they just got the news that their parent/friend/spouse was recently diagnosed with cancer. Can we better accept someone’s behavior when we know that it had nothing to do with us? Can we better forgive our spouse/friend/co-worker when we understand why they may have behaved poorly? Of course! Understanding leads to compassion, and compassion enables acceptance (of the person, not the harmful behavior).
Caleb’s autistic brain makes him different and special. It makes some things easier for him, and some things harder. He is kind, sweet, and loving. He was SO brave this year, you guys. So freaking brave. Braver than me sometimes, let’s be honest. I am insanely proud of how hard he has worked. He’s my hero, that kid.
We’ve been so blessed to have such amazing teachers love him this year. I have an even greater respect for teachers, having seen them go above and beyond for Caleb. I will always be grateful for their love and acceptance of him, and as hard as this year was…it would’ve been worse if I hadn’t felt that they were fighting for him. In addition to his teachers, we had a wonderful ABA therapist who talked me off the ledge many times, wonderful friends and family, good jobs so we can afford what he needs, and flexible schedules. We also worship a God who has been ever faithful through it all. He has a plan for Caleb, and He loves him even more than we do. We are truly blessed, and I do not take it for granted.
Thanks to all of you who have had a part in our blessings this year. We love you!