The Rarity and Necessity of Success

Today I juggled a huge work audit and phone calls with Tyler’s therapists. We finally received the report in the mail stating a diagnosis of autism.
Here is what I thought would happen:
1) Tyler’s therapy hours would be increased
2) The facility would know exactly how to update the claims they submitted to our insurance company so more therapy would be covered as opposed to us paying out of pocket
3) Back-billing previously unpaid claims would be automatically initiated for the past year

Here is what happened:
1) Even though therapy place is not qualified to provide autism diagnoses, they only really recognize their own evaluations – so they were willing to look at our report but couldn’t really use it
2) Informed us we needed to figure out our billing with the insurance company ourselves (because why should their billing experts know what to do, right?)
3) Told me that even though they are not making any progress in speech therapy, they would not increase his time unless they felt they could be effective in the 45 minutes they are seeing him a week right now for it.

I was really hoping for more but knew this might be the result. Tomorrow I get to juggle Day 2 of the big audit and contact the school district. Cross your fingers!

Despite all of these setbacks, nothing really prepared me for the call with his Speech therapist. First, she couldn’t remember how often she saw him a week and spent the entire conversation saying two 45 minute sessions a week was sufficient, but then remembered she only saw him for one 45 minute session but this was also sufficient. Secondly, she did not know any of his history for past therapy sessions or the history of his physical tongue attachment that makes it difficult to move his tongue. All of this is in his file, but there I sat on the phone, in front of my boss, explaining all of this again. Then I had to teach her about autism. About Tyler’s sensory problems that mean he won’t look in the mirror or allow other people to touch his face so therapy is more difficult. He doesn’t respond to a reward system because he has trouble with cause and effect. And she is using primarily audio cues for therapy. Tyler, as an autistic child, needs visual cues with audio being minimized.

The hardest thing to hear was her assumption that I am with Tyler all of the time. Those words are very hard to hear for a working mother. I am with Tyler for 45 minutes before work, at night, and on the weekends. Every day I daydream about taking a couple of months off work to work one-on-one with Tyler to get him potty-trained and work on his speech and to just love him. Unfortunately, I also have a mortgage, car payments, and bills to pay.

There I am, sitting next to my boss, having spent massive time on the phone, and didn’t really accomplish anything other than to be reminded that I failed at getting more help for Tyler and at being able to spend more time helping him be the best Tyler he can be.

You want to know why so many children are diagnosed for autism until a later age? This is why!!!

To even get our primary care physician to acknowledge our concerns, we had to switch doctors. Then we spent years on the phone with doctors, therapists, and our insurance company before we even got in for the appointment. This time was spent getting non-medical evaluations, surgery on Tyler’s tongue, minimal therapy, bills not paid by insurance, digging through billing codes, and being told that no one had answers to any of our questions.

To have a child with autism means you will become an advocator because that is the only way to receive any help. It is sad and really pathetic. When you look at how well so many autistic children respond to early intervention therapy, you would think that help would be accessible.

It is not. You literally have to fight and scratch and claw your way to crack the door. You learn to be a fighter. You learn how to beg. You learn how to get knocked face down in the mud, pick yourself back up again, and get right back into the fray. You rarely succeed, but you cannot afford to fail.

I did not get in trouble with my boss today, even though my performance was subpar. I am one of the lucky few. A lot of moms get this far in the game and realize they can only be a full-time worker or a full-time mother. They cannot successfully do both with an autistic child.

Do you lose your income and ability to pay your mortgage? Or do you condemn your child to stay locked away in their mind with a body they can’t use?

When you are able to work, for now at least, do you only take from an already anemic disability program or do you try to put something back in as well?

Help me put something back in. For Tyler, for your neighbors, for the undiagnosed children and the broken families. Please consider a contribution to my Walk Now For Autism Speaks 5K Walk Fund. 100% of donations go directly to Autism Speaks.

From my heart,
(C) Rachel Flinchum 7/8/2013


4 thoughts on “The Rarity and Necessity of Success

  1. It is true! I wish I can help you. Rachel, I admire your courage. Being a loving Mom makes a lot of difference in your child’s life.

  2. I’ve been in your shoes and it is hard! You’re right about being a working mother and caring for an autistic child. It is nearly impossible to do both effectively. My son was 8 when I was finally able to quit working and stay home with him. If I could go back in time, I would have never worked, but instead spent all my time focused on him and helping him to become who is capable of becoming. It’s a hard choice to make, but those precious little souls are SO worth the financial sacrifice. There is no comparison.

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