Tag Archives: IEP

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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Labels aka Diagnoses

 ‘Tis but thy name that is my enemy;
Thou art thyself, though not a Montague.
What’s Montague? it is nor hand, nor foot,
Nor arm, nor face, nor any other part
Belonging to a man. O, be some other name!
What’s in a name? that which we call a rose
By any other name would smell as sweet;
So Romeo would, were he not Romeo call’d,
Retain that dear perfection which he owes
Without that title. Romeo, doff thy name,
And for that name which is no part of thee
Take all myself.’

Shakespeare’s Romeo and Juliet

What do all these labels mean and do we really need them? So many folks run from having their child “labeled” or diagnosed with anything still today. The stigma of a diagnosis is still so harsh. What those people do not understand yet and I hope to be a small part of helping change this is that we need those labels today for proper help, treatment and resources. I was told once if you don’t use the resources available that you qualify for then those programs will start disappearing, which negatively impacts those that are using them. What programs am I referring to? Well, IEP”S are and will always remain in place(I think). However, there are financial programs that grant out scholarships to the parents of those children that they are developed for.

We have received the Ohio Autism Scholarship for $20,000 for our daughter. We made the choice to pull her from public school on the basis that we thought a special autism school would be better for her. It may still be the right choice but I think not the school we picked. There are other’s out there we will have to visit to see if one of them may be the right fit for her. This scholarship pays for the special school but it also, gives us the choice to homeschool and use the money to receive the services from a list of providers to fulfill the IEP requirements. The list is extensive and as long as the treatment is on the IEP, then it’s covered. Thank heavens! It only took me 7 months to figure this out! I happen to also have a working relationship with the OT(occupational therapist) that works with her, so that means we were able to change the IEP to include self-esteem therapy and The Listening Program we have coveted since February of this year.

What does self-esteem therapy look like? Your guess is as good as mine but I get to make that up as I go. Yay for us! Big Win finally! I can make that into art and music therapy, swimming lessons with an autism specialist, and so much more! In a nutshell, all the programs I was drooling over when we moved here and couldn’t afford. Well, if I homeschool that 20 could go pretty far! So, what about labels and diagnoses am I trying to express, really? Don’t be afraid to get one to help your child. Do not let them fall through the cracks like I did and so many of us did when we were in grade school. When I was going through a lot of this, even if I had been diagnosed there was no help or money for help back then in the 70’s and 80’s.

Now, someone over the past decade or so has cared enough about our little ones to work very hard to create these programs and you can only access them with a proper medical diagnosis. If you are concerned and think that your child is not developing properly based on the general rules pediatricians follow, then by all means don’t hold back it is worth the mention to your child’s doctor. Early intervention is so very important but if you miss the mark for that be persistent  like I was. It pays off and your child gets help eventually. That there is a post all to its self, the road to a diagnosis or 3 was a long one. There were times I wasn’t sure I’d make it but I never gave up.

A last note on labels and diagnoses, remember that it is not the labels that make them up. They are more than the diagnoses given. That is what you are fighting for by getting them diagnosed. As parent’s it is our job to rescue them from the symptoms of their diagnoses. The only way to do that is to seek help and receive those “dreaded” labels.