The Long Road to Autism-Part 2

This Post is the 2nd part to The Long Road to Autism-Part 1.

So, there we were out in the South Western part of Nebraska. In a little town called Ogallala. There was only one counseling group in town, which we were unable to get into to see anyone. I found a job and lost that job because I had to leave so much to go to the school to clean up her potty accidents or give her the random hug. After the twins were born, we started seeing a pediatrician an hour away. He asked about my other children and I mentioned my girl’s difficulties. He suggested I bring her into him that maybe he could help. I was skeptical but I did schedule her an appointment with him. This is where it all began. The road to our diagnosis.

He looked her over and recommended that we meet with a psychologist that would be traveling there to their location once a week from Munroe and Myer Institute. She was diagnosed with ASD(Autism Spectrum Disorder)just before we relocated again. I thought that with this diagnosis everything would get better. I wasn’t figuring into the equation that still no one was going to believe it. My sister actually asked for credentials and proof. My husband was more convinced but not completely. It’s no wonder why so many families with special need children end in divorce! We didn’t, haven’t and have no plans to but sometimes he  it is still challenging.

We ended up back home in West Virginia for 9 months. It was just long enough for her to be enrolled in public school and for them to decide to rule her diagnosis out! Yes, you heard me. Mind you she was 8 in the Spring when we got the diagnosis.  Now, 9 and being taken off the spectrum. I was at my wits end to say the very least. Didn’t these people realize how much early intervention we had already lost?! It took 4 years to be diagnosed and less than 6 months to be un-diagnosed.

After speaking with my Aunt at great length and doing my research on the web. I concluded with out help from said husband that we needed to move 1 more time and it was for her this time. He would have to find a job once we got there. So, we found a home, purchased it and moved to Cleveland, Ohio.

I am happy to say that I am not going to bore you with the mundane details of the past 9 months but I will give you the highlights. We went to the city and spent 3 1/2 days in the actual school for the IEP process. They arranged for home based schooling while the rest of the process was finished. BTW: They said the IEP that was wrote in my home town was the worst they had ever set their eyes on. Once completed and signed we went through all the red tape to get her in a special autism school. Yes, that would be the one that didn’t work out but no one ever said this process was going to be easy, right?!

So, many other crazy things happened to us during those 9 long years. She suffered 4 plus years with severe acid reflux to no avail. She had every test, biopsy, MRI and more to figure out what was wrong with her gastrointestinal system. Only to discover that there was nothing wrong with her system but that she really does have an autism disorder and it is what was impairing her ability to potty train. She is still battling regular urinary tract infections with a daily dose of antibiotics. All of these are a short laundry list of secondary illnesses that children with ASD typically fight throughout their childhood. One final note on that said disbelieving family: They all believe now and that’s all that matters.

My girl is now 10 and being home schooled again. I have, however, found some great resources to help me with this and figured out(I think)what to do with the rest of the scholarship. I will update in later posts on those things as they play out. She has been diagnosed with ADHD and Trichotillomania in the past 2 months, which I am certain without a doubt she has also. I have done my own research right after seeing the specialists. You have to be a persistent pain-in-the neck advocate when it comes to your children. Also, I am still not a professional writer and there are still mistakes in my writings.


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