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Thursday, April 7, 2016

My Little Cricket’s Delay: All This Paperwork

There have been so many challenges becoming an autistic mom. My old life didn’t get easier because this new life needs so much more work. I already felt tired and drained before our diagnosis. But no one has time for exhaustion right now. The thing I hear over and over and over and over again is that early intervention is key. It seems to be one of the few general statements about autism that everyone agrees on. But 40 hours a week of one on one therapy with an adult seemed so intense. After all where is the time for play, where is the time for a child to be a child. Where is the time, autistic or not, to have some space to just be.

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First and foremost my job was to read as much as I could and talk to as many professionals and parents as I could; because I knew virtually nothing about autism. What I have found is that no one can tell me what causes autism, how to best help and autistic child, or what child will get better and which will be classified as low functioning. Instead of concrete answers I have found a sea of opinion, speculation, guesses, data, advice, experience and information. The challenges I face are multifaceted. I have to:

- emotionally accept the label and move forward to getting my son help

- research, research, talk to professionals and doctors, research, more research, get multiple assessments done, and more research

- learn my child’s core challenges inside and out, be able to describe and understand the how and why he does the things he does

- research, research, talk to professionals and doctors, research, more research, get multiple assessments done, and more research

- take the core list of my sons challenges and decide on the types of therapies that would help with that list as well as the therapists that have the experience and training to help my son, AND people that I can rely on and trust, since these are the people that I am trusting my precious heart too

- research, research and more FRIGGIN RESEARCH, interview therapists, call therapists, look at clinics, visit preschools, visit special preschools, interview more therapists, ask people’s opinions, ask other autistic parents opinions, get assessments, get more assessments, join support groups

- settle on team members slowly as I find them and then begin to learn all the various therapies so I can apply them at home to get the best results

- question my direction, analyze how my son is doing, help him adjust to a whole new lifestyle, adjust myself to a whole new lifestyle, drive, analyze, research, learn and grow

- deal with insurance, deal with the schedule (my normal life schedule, my sons new therapy schedule, and all the therapists and preschool schedule), deal with the paperwork, deal with the information, deal with the timesheets and who is doing what on any given day

- the research, more research, my eyes and head are spinning with research.

- fight with the insurance company constantly to get coverage for the therapists that I found and who are at this moment helping my son with my private funding since no one has time to wait MONTHS for insurance to get their act together

- Start work on the IEP, need to find a preschool, typical or special education, weighing options, research, research and more research


One of the biggest things to work on, and what this post is about, is the massive amount of paperwork and documentation that needs to be addressed. I am a visual person, and I like things organized. Several things helped so I can be sure not to miss something. I had a large visual schedule in color coded blocks that I could hand out to all our therapists. It helped me see where our down time was and helped me identify windows of time for the therapies I still wanted to add. This schedule is still miss our 6-8 hours of ABA therapy. I am still searching for the right therapy.

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I also had a simple daily calendar that I marked which therapies we actually had on that day, which were paid by us, which were paid by the regional center and eventually I will put on this what insurance reimbursed (when that ever happens is beyond me).

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I also kept a separate timesheet for each of my therapists and my sitters. I wanted to know the hours they were working and how much we were paying them per hour so I could double-check when the timesheets came at the end of the month before I paid our vendors.

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I kept a list, along with copies of all the invoices, of the documentation that I sent the insurance company. It has now been three months and I have yet to see a dime from them. This is getting very expensive.

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And then there is the therapy log. Brite Kids, the clinic based preschool my Little Cricket attends gives me a daily and a weekly report of what he is doing at school. But I knew I also needed one for the rest of the therapies we were doing. This log is only two or three short sentences per therapy, but it reminds me what happened and as time progresses will allow me to see how far we have come.

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Lastly I printed out every single assessment we received and have highlighted, corrected, and added notes onto them about what I think about the assessment. I need to know these assessments backwards and forwards, but more than that I need to also know what I agree with and what I don’t. Something everyone tells you in the beginning, is that you will be your childs greatest expert. And as terrifying as that was to hear then they are right. These professionals can only assess your child in a snapshot of time.

With everything bound up in this binder, I have my Little Crickets full profile of information at my fingertips. I am sure I will add and modify as time goes on but I wanted to share my organization. I didn’t find hardly any help on the parent side of shuffling through all of this. Maybe this will help someone else.

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