The Hardest Part is Always the First Step

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Everything starts with that first word. That first look, that first stab of fear and the first step into realms unknown. Well, here I am taking that first step into the unknown. I have had it in my mind for a long time to start a blog but fear was always that wall that seemed insurmountable.

This afternoon as I sat at the table watching my cat sleep soundly on the couch  I listened to the therapist downstairs  telling son in a high pitched voice “do this” as if she were talking to a three year old while I waited for the secretary on the other end of the phone to tell me once again there would be a six months wait to get my nonverbal nine year old speech therapy. I couldn’t help but think back to those days of constant insurance denials as I watched my son slip into the nothingness.

But today was different. I wasn’t scared. This was no longer uncharted territory and I knew there were going to hurdles to be jumped. I have learned that just because one way doesn’t work out there are always round about ways to cut through the red tape. After sitting there angry for about five minutes after getting off the phone I looked at my notes and the wheels starting turning. I began to run through the resources I had exhausted in the past looking for other services and remembered “Wayne county community mental health agency” I looked up their number, dialed the number and began as I always do, “Hello, my son is severely autistic and I’m seeking out help to obtain speech services” A line I often recite in my head almost obsessively when I decide on a new therapeutic avenue to explore.

After speaking for a few moments with a tone of desperation in my voice the woman opened up to me and said “I understand, my daughter is disabled, she is 26 and we did not qualify for medicaid either. We finally got a lawyer that pushed it through for us.” we ended up talking for the better part of 10 minutes as she searched her database for resources that might be able to push Aiden through for some speech pathologist that may be able to help us to obtain a AAC (Augmentative Assistive Communication) speech evaluation to obtain an assistive speech device. I told her of my struggle working in psychiatric and not being able to obtain psychological services for my son and she personally empathized with my story as she explained to me that “when I applied for disability I told them I didn’t want the money just the insurance”. I fell silent and she replied, “are you still there” “Yes”, I said. It took me a moment to swallow the frog in my throat and push down the weight in my chest before I told her my experience at the medicaid office ,” I remember sitting in the chair across from the woman who denied us the third time begging through tears and saying ‘I don’t want the money I just want the insurance”. the woman on the other end said, in a somewhat hushed tone, “yeah it seems that now a days if you want good care you have to do it all wrong. You would think that private insurance would get you better care but now a days that just isn’t the case”.

As I sat on  hold while she spoke to her manager I couldn’t help but to imagine the feelings that were running through her or how many times she had heard this same story. I didn’t really expect that they could help but I wasn’t about to leave any rock un-turned. She came back on the phone with the solid reply, “yeah, my manager said we can’t touch you because you have private insurance”. We both fell silent knowing there was nothing more she could do and I said “okay thank you have a good day” and she said the same and the conversation ended there. The phone call ended with a click and the connection was closed and the connection was lost.

There is a certain detachment that has to take place in the world of special needs. You have to learn to abandon any emotional connection to the child/individual you are caring for in your dealings with business. You see, the business world is not interested in helping your child. they, are interested in making money. When they deny you they aren’t necessarily denying your child they are looking out for the best interest of their company and no amount of personification of your child’s disability is going to change the policy book. You have to learn to come at every dealing with logic. You have to find a way to convince the companies that this is, in fact, good for their company or in some round about way does fit into their policy. Sometimes that means billing under a different code, sometimes it means showing them that a specific alternative treatment has been proven effective and sometimes it means simply saying “research has shown that the earlier a child receives intervention the more money is saved on their care as they progress in age”.

I was told today that one of our ABA (applied behavioral analysis) technicians was quitting the company and would no longer be working with our son. She told told me this as her eyes filled with tears and her chin quivered. I smiled at her and said. “this is the nature of the business, we love you and we will miss you but you are young and at the beginning of your career. I wish you all the luck in the world”. I remember when our first long term tech left I cried for days, months even but after so long of dealing with the comings and goings of therapists I have learned about healthy separation. The journey of autism is filled with people that come and go and every therapist that you come into contact with leaves an everlasting mark in your life in the skills that they taught your child and that is the truth of the matter. Every therapist is valuable whether to your child or to your personal growth. And never overlook the growth of yourself as you travel this journey because sometimes its you that grows more than your child and don’t ever downplay the importance of that growth.

I have learned that there is no book that can teach you what to expect in the world of autism parenting. There is nothing to prepare you for the emotions that you will feel you or how to manage them in the moment when all you hear are clinical terms and “policy speak”. This afternoon as i spoke to aidens BCBA (Board certified behavior analyist) I told her flat out “please don’t forget to listen to your clients. You guys get to clock out and we don’t. We are tired and we are relying on you to help our future to be better than it would be if we didn’t have any help. Please don’t downplay the importance of the human side of your job. its not just about data, treatment plans and putting in your three hours before heading off to your ‘next client” down the road its about the whole picture. And ABA often seems to forget about leaving room for humanity”.

I think the part that has promoted the most growth in me is the ebb and flow of this life. I have learned that just because this moment is bad doesn’t mean the next moment will be. which is why tonight even after all the denials and wait lists and even that intense conversation with that woman over the phone I was able to sing to the radio using the pepper shaker for a microphone and dance with my daughter in the kitchen as I cooked home made fried chicken strips and homemade mashed potatoes as if everything was right in the world. I have learned to compartmentalize the anger and the pain. I have learned to say in my soul, “well that was five minutes ago and I’m burnt out so I’m walking away from this for the rest of the evening”. Does this thinking really accomplish anything? Maybe not in the moment from a business aspect but ask my daughter and she will tell you that it makes all the difference in the world.

It is because of autism that I am who I am. It is because of autism that I can smile despite all the hardships in the background of my life. It is because of autism that I am able to push past my fears and compose this note to share with all of you. It is because of autism I have made my dream of publication come true. It is because of autism I have learned to love despite all the reasons to the contrary and “that has made all the difference”.



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