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Saturday, May 28, 2016

My Long Drawn Out, Stream of Consciousness, Thoughts On Autism

First of all these are just my uncensored thoughts. Secondly if you have an autistic kid I am sure your child is oh so different than my kid, and what they need is probably vastly different than my son. Thirdly I am only 4 months into this journey. Only 4 months into my research, and talking to people, and coming to terms with the roiling landslide of emotions. I am the first one to say that I know very very little about any of this. And lastly, I only know what I know, I only feel what I feel, and in no way are either of those an attack or judgment on how anyone else is going through this journey. And so here we go….

Autism sucks.

We don’t know what causes it.

We don’t have a black and white test (like a blood test) to tell if someone definitively has it. Instead we have this soft diagnosis. A list of behaviors, a short window of observation, a parent questionnaire and then you get a diagnosis. There are documented cases where kids grow out of autism, some specialists debate that these children therefore possibly never had autsim in the first place. Some doctors gave my son a diagnosis of autism; other doctors gave my son other conflicting diagnosis’s. Which is totally driving me mad; there is a part of me that believes that my son has autism, he will do something and I will think yup that’s autistic… but then there are other parts of me, other times when I think that my son couldn’t be autistic. The glass half empty thought is that my son isn’t presenting behaviors that everyone is agreeing are autistic. Which therefor means that whatever my son has, autism or something else, it is mild enough to even leave professionals unsure. Point is that autism, at least in the medical community that I have been dealing with isn’t black and white. I may never get an answer. AWESOME.

We don’t have a sure way of treatment that everyone responds to appropriately. So, me as a parent, just needs to muck around and trust my gut, AWESOME.

We don’t know which kids with autism are going to respond well to treatment and which kids are going to stay in their own world making slow progress. AWESOME.

Basically doctors only know enough to drive me crazy. These kids, each one is a snowflake, so very different than each other. There is a saying that if you know one kid with autism, you know one kid with autism. I keep taking my Little Cricket to therapy, I keep meeting other autistic kids, and they are all SO DIFFERENT. There are kids that are quietly rocking in the corner, there are kids with no eye contact, there are kids that have to walk the same path to the car and take the same elevator to the 6th floor, there are kids who do not speak, there are kids with amazing language, there are kids that are brilliant and ones that seem slow, there are kids that quietly play alone and there are kids that are very social. This list is endless and mind blowing.

So aside from not knowing anything; not knowing with 100% certainty that this is autism, not sure that the treatment we are doing is even the right and best treatment, not knowing how much my son will improve and what kind of life he is going to lead or handicaps he is going to have, everything is good (Sarcasm). Kill me.

I go to these therapies, I speak with other parents, we compare notes of what is working, and what isn’t, but what I found out is that even though sharing the experience of raising an autistic child is helpful that you can’t really follow the things that are working for someone else, because each kid’s challenges are so different. What works for one may or may not work for another.

Moving on, I also have an issue with the people who are trying to eradicate autism, to cure it, from their child. Autism is a different way of thinking. It is a different wiring of the brain. It is a neurological disorder. You can take a child, especially a young child, and train them and drill them and try and make them cover up the behaviors that makes them unique. But in my opinion you have to be careful how far you go with that. And what delivery method you use to shift their behaviors. Think of this, if you constantly tell a child over and over that their way of thinking, that their way of doing things, is wrong. That they have to do things that make them upset and uncomfortable in order to conform to normal. Over and over and over and over again until they do things the way you want them too. That to me would feel like a form of psychological torture. The underlying message is that ‘you don’t do it right’. Tell a kid that a million times in a million different ways and what does that do to a person’s self-esteem. There are adult autistics who labeled their therapy when they were children akin to abuse.

I know different therapies can be many different things depending on the therapist and program that they follow but there is a fine line between let’s say a therapist helping my son to work on his socialization skills and someone forcing him to look into someone’s eyes when looking in someone’s eyes makes him uncomfortable. Imagine something that makes you super uncomfortable, let’s say nails on a chalkboard, and while someone is constantly and loudly scratching on a chalkboard making the most spine tingling cringe in your body you have to smile at someone else, look into their eyes, wave, and say hi. Could you do it, yes, would it totally suck… YES!

Autism isn’t a cancer that needs to be cured. Words like triumph, miracle, recovery, I keep reading them and it’s starting to really make me mad… as if autism is something that a person battles, that it is something that they can beat and never be bothered with it again. It is a neurological non typical wiring of the brain. I am in the camp that it can never just go away.

Autism also sucks because many of the people I come in contact with are ABA pushers. Applied Behavior Analytics is the approved, insurance covered treatment for autism. My issue with ABA is that everyone talks about it like it’s the only way to treat these kids. I am unclear how one type of therapy is supposed to be the best to treat all these very different children. I am not doing a typical 40 hour ABA plan for my son. I researched it. I spoke to a ton of people about it. I interviewed many ABA companies. I understand that it is the only empirically validated type of therapy out there with documentation and tests to back it up, however after so much deliberation I decided that it wasn’t the way I wanted to go. I have gotten disbelief, anger and so much parent and doctor shaming that if I don’t conform to the 40 hour a week of ABA then my child will not meet his full potential. And you know on top of the pile of suck it just adds MORE suck; to not have more support to do what I believe is the right path for my child. It totally sucks because although I am pretty sure this is the right decision for my son, I am not absolutely sure. Who could be, with so many unknowns.

I wish the medical community knew more. I wish I knew with 100% certainty that I am dealing with, autism or something else. I wish I had an exact plan to execute.

Enough lamenting… back to what I think. For me, just using ABA or even using ABA as the main foundation of our therapy is just too narrow. I agree that getting early intervention is key and I agree that intense early intervention can make a tremendous difference. I believe that some behaviors can be mitigated and massaged. I believe that it is possible for a child to overcome some of their challenges in a humane, caring, gentle way. Autism however is a neurological disorder, and although symptoms can be managed to some extent, regardless how a person manages their symptoms I believe that autism will be a part of their identity forever. My job is to create a treatment plan that works for my child that fits his unique needs that targets the things that I think are the most important, and that helps him reach his highest potential.

My son:
- is social and has eye contact, just not as social or using as much eye contact as he should be
- has language, just not the language level that he should have
- has response to his name and directions, just not as high as it should be
- does not have an intellectual disability, in fact his intelligence and how quickly he learns is a HUGE benefit
- has such minor stimming, that I am not even completely convinced that he actually stims
- is amazing with transitions and isn’t rigid at all

I decided during this early intervention window that I wanted to focus on three things. I wanted to work on strengthening the areas that I believe were the most important to my son’s future.
1. Increasing my son’s eye contact and his joy at making social interactions
2. Increase my son’s receptive and expressive language including his response to his name and following directions
3. Increase my son’s play levels into imaginative play

That is it. I want to focus almost all of our attention on those three things. Sure we are working on other things at the same time like increasing his gestures, which is an important beginning building block to successfully acquiring language. But by focusing on these key delays and working on giving my son the stronger skills I am hoping to use this crucial time so that my son will continue having rich social relationships with people.

I also decided to put aside as much in our life as I could so I could focus on my son’s therapy. I decided that it was most important for me to make the commitment to put in the work, to take up the gauntlet and learn everything that I could. I asked around and interviewed so many different therapists. I selected the best team that I could find to implement my goals. I go to almost every single therapy. I sit in, I ask questions, I ask for reading material, I learn the how and the why to the best of my ability, I ask for homework to continue doing after we leave therapy and then I implement everything into our daily life at home. That way therapy doesn’t end when a therapist isn’t there. Even the best therapists aren’t there 24 hours a day; they are only a small part of the picture. Statistically there is a greater chance of success when families are active and involved. But even that isn’t a guarantee.

We are focusing on a looser play based, pseudo Denver Model/Floortime approach. I have also finally found the perfect ABA team and have added in therapy hours to our list. Currently my biggest challenge is deciding on a school, but that is for another post.

2 hours Speech Therapy
4 hours Occupational Therapy
6 hours Floortime Therapy
6 hours ABA Therapy
2 hours JASPER
4 hours of clinic based early intervention preschool

Even though we aren’t doing 40 hours a therapy a week, we currently are doing 24 hours, it still feels like too much. I sometimes feel like I am scheduling my sons childhood away. The only thing that keeps me going is knowing that he needs help, he needs this, and that our plan… it is working. I also have to remind myself that this will hopefully not be our reality forever. That right now my son needs this help, but with this help I am hoping that he will need less in the future.

For me coming to terms with what we are dealing with is still a weekly fight. For me processing the emotional side of this has been a hot mess. For me coming up with a plan and finding the right people to execute that plan has been exhausting. For me managing the politics of the state, the school district and insurance is GOD AWFUL. For me fighting and learning on so many levels in so many different directions has been monumental. For me trying to juggle the schedule, the therapists, the doctor appointments, our lives, my business, AND a baby has been almost impossible.

Our days are exhaustingly busy. We are currently not living the life the way I had pictured it, I am not raising either of my children the way I thought I would. I had to manage my expectations and shuffle my idea of what was best. I had to change my definition of how I wanted to be a stay at home mom and what I thought our lives were going to look like. On the positive side we are so very lucky because My Little Cricket is doing amazingly well. He loves his therapists and I feel like they truly have his best interests at heart and love him back. We are managing, some days better than others. And I am dealing with a mountain of guilt and fear but that is for another post.

One day at a time.

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