Caleb, Autism and Me

When Caleb was born one phrase stood out to me, I even remember writing it under a cute and cuddly photo of Caleb as a newborn baby that I posted on Facebook – “I am so proud of you”.

I just had this overwhelming feeling of being proud of him, just for who he was, never having ever taken a step, spoken a word or done anything that might typically elicit one to say that phrase – “I so proud of you”. But I was. And I am. Honestly, I feel like this was a phrase that God imprinted on my heart for Caleb. This memory, this phrase, have even more meaning to me now as I look back and see all that he has had to overcome and continues to overcome on a daily basis in order to do his very best.

Before Caleb was diagnosed with Autism I knew almost nothing about this diagnosis. Growing up I was honestly intimidated by the different needs that people had because I felt like I didn't  understand.

Fast forward to 2014 and our son Caleb was diagnosed with Autism, something that I could have never imagined happening, but it happened. There had been signs leading up to the doctors appointment and all of the testing that followed but part of my brain didn’t want to accept that something might really be going on. Things like this can feel scary when it means that it is going to divert us off of the “typical” path that we expect a family, a mother and child, a father and child and the child as an individual to go down. It feels scary.

Little by little over the last 4 years my brain has continued to adjust to this new reality – coming to accept that our life is not going to look like what I thought it was going to look like. It is not going to look “typical”. This has been something I have had to go head to head with since Caleb’s diagnoses and continue to wrestle with today – this idea of “TYPICAL”.

I feel like as human beings we like to have clear cut expectations of what should be expected of people at varying stages, ages, levels of development, roles, academic grades and so on. These can be good in certain situations but Caleb has taught me that it is not that simple to measure where someone is at. It is not that simple to measure what someone should or should not be doing. We are all so much more complex and there is so much more hidden inside each of us than we will probably ever truly know. Caleb has taught me that I cannot label someone by what I see on the outside through performance, appearance, behavior or language. None of these things define a person. These things have importance, but they do not define a person. Just as Caleb struggles internally in ways that can not be seen with the eye, which can result in screaming or aggression – there is no telling what each person is going through on a day to day basis internally and how that might manifest itself on the outside in their behaviors, actions or words. My job is not to fix it. My job is not to make the problem go away. My job is to meet Caleb where he is at and to love him through it, always assuming that there is more of a struggle going on on the inside than I can ever imagine.

Caleb has taught me and continues to teach me daily to be gentle with people and to not assume that I understand what is going on with them.

My own struggles have become very apparent in this journey with Caleb as well, as only parenting can do. My friend and I were just laughing this morning about how God uses parenting to refine us, #sanctifiedbymotherhood – it’s so true! In our early days of beginning ABA {Applied Behavioral Analysis} Therapy for Caleb there was a situation where he was having a meltdown over something he couldn’t do his own way and to try and help I knelt down to give Caleb a hug to let him know it would all be ok. I felt like I was doing the loving, motherly thing to do. At that time Caleb’s therapist (which, let’s be honest, became my therapist too in so many ways) very gently let me know that any change that we wanted to see in Caleb’s behaviors would have to start with me. I’m sure I probably looked calm on the outside, but on the inside I had a freak out moment of: fear, of oh no I have to change(?), wait a minute how did this become about me(?) and I could almost see the looming weight of the work that was ahead of me. Thankfully it didn’t have to happen all at once as I initially felt but it continues to happen little by little over the months and years. I’ve had to face behavior after behavior of my own that were not healthy for me and ultimately not healthy for Caleb. I wanted to help make everything right but in the process I was actually keeping him from growing healthy behaviors of his own - like language, following instructions, self help, independence and confidence in his ability to do hard things on his own. In order to help him get there I had to let go of my need to make it all better – to let go of my need to somehow make things feel easier for all of us and to let go of what I thought a Mother was supposed to look like. I am learning that sometimes helping means stepping back. Sometimes helping means letting them struggle through it. Sometimes helping means letting go. Sometimes helping means saying no. Helping and loving doesn’t always look like a warm hug in the moment, sometimes it looks like stepping back – and that’s ok and that doesn’t make me an unloving Mom. This stepping back makes me a Mom who is growing healthy boundaries and who has a lot of love and respect for her son. This was a tough one for me to learn. It rocked everything I thought I knew about being a Mother. It rocked everything I thought I knew about love.

Caleb has taught me that helping does not always mean doing what appears to be the “nice” thing to do.

Appearances have been something I have struggled with for a long time. I have wanted to appear a certain way in order to be accepted, appear a certain way to be able to coast under the radar, to appear a certain way so people would think good things about me. This sounds exhausting now that I am typing it out! Well, nothing can quite blow your cover of having a good appearance like walking through a store with a screaming, hitting, flailing kiddo. Yes, my cover has been blown. The struggles I have had in public with Caleb when he’s gotten to the point of having a meltdown have helped me to see how much weight I was putting on my appearance and what people thought about me. I would never wish these struggles for Caleb but they have definitely helped to make certain things very clear. At first, to be honest, I just really wanted the behaviors to stop so that I didn’t have to feel embarrassed, but over time I realized that how I appeared in that meltdown moment to other people was not equal to who I really was. Once I realized that I could be who I was and know who I was despite how I appeared to people around me at Target I felt so much freer. I felt freer to let Caleb be where he was at in the moment. I felt freer to be where I was at in the current moment without feeling the need to cover up, modify, or change how things looked on the outside. These seemingly embarrassing moments have helped me and continue help me to let go of control.

Caleb has helped me to let go of my need to control myself and others in order to appear “good”. He has helped me learn to be myself and give others room to be themselves too. He continues to teach me to not look around to the reactions of others to find out who I am, but to look up to find out who I am. I am learning day by day that my true identity is in Jesus and it is always enough.

As I’m writing this I am realizing that through these experiences with Caleb God has broken through so many of my preconceived notions about what different words mean and what they look like – words such as “Good”, “typical”, “love”, “success”, “proud”, “Mother”.

Caleb has changed the way that I see things. He has reshaped how I see the world around me.

Caleb continues to do ABA therapy which has helped him and our whole family in so many ways. We love our ABA therapists so much, they have really become like family to us. Elijah (our  youngest) will even call one of Caleb's therapists who's name is Kendall, Grandma Kendall sometimes! Caleb usually has therapy 4 days a week for 3 hours at a time after school and on Saturday afternoons. On these days I am typically in the kitchen while he’s doing therapy. As I move about the kitchen I often listen in as he answers questions like - “What is your name?”, “Where do you live” and “Who drives a bus?”. Sometimes he answers effortlessly, and other times you can hear the struggle in his voice, the frustration when the answer doesn’t come as easily as it did before. He keeps going though. He keeps going even though it is hard. He keeps going even though he worked hard at school for 7 hours before this therapy session. This little man likes to work hard. This little man likes to get the answer right and will work hard to get there. This little man pushes through frustrations, barriers and the uncomfortable to get where he wants to go. I look at him sitting there at his desk, working through that question that feels so much more difficult this time around and I am so proud of him.

Caleb has taught me what hard work and perseverance look like. 

As parents we see ourselves as the teachers, as the ones helping to shape - and we are, this is our job, but the farther we walk down this path with Caleb the more I realize that our kiddos are teaching us at the very same time. Let's soak up all the wonderfulness that these one of a kind kiddos bring to this world on a daily basis and all that they teach us in their own unique ways. 

I love you Caleb, I am proud of you just for being you and I respect you more than words can say.