Who supports the one who supports others?

Today was a bad day! It was one of those days that started off on the wrong foot. From the minute Keyan woke up it was one challenge after another. Totally off routine he was all over the place: upstairs, down, loud, cranky and defiant. It was one of those mornings that had me holding my breath. I hold my breath when Keyan is stressing me out – it is as though my breathing annoys him. I say little prayers – hoping both he and I will survive the day.

Lately I have come to the conclusion that we focus so much on Keyan’s autism that we overlook the whole equation which is he is; non-verbal, suffers from impulsivity (which is often bigger than him), has an extreme anxiety disorder and now I suspect puberty part II. After endless hours of observations and analysis this is mama bear’s conclusion. I could be off but I have strong maternal instincts. I refuse to label my kid the bad one and so I work hard to understand him. After all I am his advocate and translator for the world. 

After a delicate dance I manage to get him off to camp. Phew – I can breath right?! I am not off the hook yet. I ready myself to enjoy a lovely day with my sister, Nancy which includes pedicures, lunch and a quick visit to a cousin’s house. Sitting at my cousin Steven’s house the texts start to roll in. I feel rude picking up my phone but I see it’s from one of the camp monitors. I have to tell you I don’t have the energy to recount the whole story but in a nutshell Keyan had a total breakdown and he bite a fellow camper and a monitor. The good part is that when she contacts me Keyan is now calm. I instruct her to bring him home and that I will be home as soon as possible. 

When I get a call or any kind of message about my son I remain very calm so that I can use my energy to take action. This means my brain cannot absorb all the incoming information.  I decide to proceed to the camp so I can piece together the whole story. Again I stay calm in order to absorb all I can and process what has really happened. In this situation I act as Keyan’s mom, the monitor’s support and the person responsible for the whole camp (all monitors/campers). My job is to make everyone feel heard, validated and safe. I tell the girls to write up a report on Keyan because that is camp procedure.

I make my way upstairs to apologize to Lukas. The first thing I do when I see him is ask what happened? Did Keyan give you a bobo? He says “yes”. I put out my arms to hug Lukas and he immediately takes me into his arms in a tight bear hug. I reciprocate by holding him just as tight and it seems to last a good 30 seconds. Within that brief period I am overwhelmed and start to cry. I whisper in his ear “I am so sorry Lukas”. Without words I feel his forgiveness and he confirms it when I let go and ask “are you and Keyan still friends” and he responds “yes”. My heart melts because I have always loved Lukas and in this moment it confirms why. 

I walk away with mixed emotions; sad for Keyan’s actions and touched my Lukas’ grace. I think to myself these kids are incredible! I head downstairs to talk to the head of the camp, Laurence and the monitor Keyan took a chuck out of (in case you are wondering Keyan bit her finger). The victim of Keyan’s rage is my niece, Maya. A big part of me is so embarrassed that he would do this to her, of all people. As she starts to retell the events I lose it. Instead of crying my face off I simply get up to go to the bathroom to regroup. I come back when I am ready to hear it. Maya continues to tell me the story. I listen and I am so proud because she did exactly what she should do in such a situation. In that moment I realize how much she has learned in the last 2 years working at Camp Oasis. She is calm, compassionate and has what it takes to work with people with special needs. We wrap up the conversation and again I apologize for Keyan. I leave the Camp broken about my son but beaming with pride over the team I have assembled. Aggressive outbursts are the hardest thing for me when dealing with autism. They leave me embarrassed, exhausted, hopeless and ashamed. It’s okay that Keyan has autism but why why why the outbursts? Those are my dark times – when I feel truly hopeless about it all.

I come home totally deflated and left to deal with Keyan. As soon as he sees me walk in the door he needs me to tend to him. It comes in the form of a drive first then the endless buffet required to sooth him. I am exhausted and part of me mad at him for ruining yet another lovely day I was having. Mad because I always have to be on with/for Keyan. He doesn’t get that he hurts me, that I am exhausted or that I need to be left alone. Mama mama mama – the only one word he can say and he will have it on repeat until I give him what he needs.

I am home and all I want to do is lay down and cry. Cry away all my stress, frustration and all the tears my body can produce. Do I ? Absolutely not!!! Soon my daughter will be home and I don’t want her to see me like that. After a day of work she deserves to come home to a happy home. So the tears don’t come.

My husband makes his usual courtesy check in call. When he asks how I am I can’t hide my feelings. I give him an executive summary of what has transpired. He adopts the same frustration I have over our son’s recent behavior. I feel so lonely because in all of this who is there to support me? It may make me sound petty or somewhat selfish but it’s because I am suffering. I tell my husband that I need his support.  I am the one who has to deal directly with these issues and yet have to find ways to comfort myself through it all. In the moment he is incapable of offering the support I need and that’s okay he was simply making a check in call and didn’t expect to hear what I had to tell him. I want so desperately to have a shoulder, allow me to cry and give me that “everything will be ok speech”. BUT it’s not there. I feel lonely. 

I don’t know how better to describe my emotions after today’s events. I don’t want to seem needy or weak but today I am. Today was a bad day and all I want to do is curl up in a ball and feel sorry for myself. There are often days like this when I feel defeated and alone. What do I do I pick myself up – brush my shoulders off and solider on. It’s the only way I know how to keep going on. 

One last thing to share…

You know I try to find the silver lining in every story I share because it is what keeps me going.

I would be lying if I said not one person reached out to me today. In fact, Marina, the other monitor involved in today’s incident wrote me one of the most touching messages I have ever received…this message is what finally made me cry once I got home : 

Hi Audrey. I just wanted you to know that we are all okay and what happened today is water under the bridge. It is the reality of autism, and it is our job to take these things as they come. I hope you know that we do not think any less of Keyan, no matter the good days or the bad. He is a special boy with the most pure heart, and spending time with him is an absolute joy. We reminded Lukas that Keyan always loves him. And we always love Keyan too. Hope you guys have a great night. You’re doing an amazing job mama, thanks for everything you do.

Dearest Marina – this message means more to me then you will ever know. Please accept my deepest gratitude for taking the time to reach out. I appreciate you – xox 

© 2018 Audrey Burt

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