Parent Perspective

I got an email last night asking me if I would mind answering a couple questions, as a parent of a child with disabilities for a college class this person is taking. I honestly had to think a great deal about this. So, I wrote back and asked if they are interested in now, or from the beginning, of course it would be from the beginning. That's a very painful time in my life and I don't like to dredge it up, but to help someone to understand the thought process of a parent at the beginning, well there is no question I just have to do it. Then of course I should share it on here too!

I'm not sure how many people know my diagnosis story, the short version is, my middle son was tested first ~ because of some pretty noticeable delays and one of the ladies that visited weekly (from a company now called Tiny-K) suggested we test him for Fragile X, as he fit a lot of the criteria. We tested him, his test came back mosaic Fragile X. Our oldest son had been in a pre-school program due to some delays, so we went ahead and had him tested as well. While waiting for his test to come back, my grandfather suddenly passed away, which rocked my family to the core. A couple weeks later, my husband broke both of his wrists when a uni-loader he was driving rolled over and he jumped out of the cab, trying to avoid injury. Then, a few days after that I walk into my first IEP meeting, as my oldest son is finishing his school year and will be starting Kindergarten the next fall. We were still waiting on the official results from his test, but had a pretty good idea that he was also affected by Fragile X. So, like I said....painful, beyond painful actually, my world was crumbling around me. 

So, back to present day and this e-mail. 

"As a parent of a child receiving Special Education Services please share your perspective of the special education placement process. Do you feel that the process is efficient and effective? What, if anything, would you change about the process?"

This was my response:

hmmmm...I have many mixed feelings about this, as a parent the entire process is very emotional, for the staff though it is very clinical. So a parent goes in with full emotion, just learning (for the first time possibly) that their child is lacking in certain areas, finally seeing exactly how far behind the "typical" peers they are. Meanwhile, the staff has known all of this for a while, handles it all very unperson-able.  Example:  My first meeting, we were waiting on a diagnosis as we knew my son was delayed, we never realized how much, I went to the meeting alone and I sat across from a guy (I think he was the school psychologist at the time), he just hurried through this assessment he had done, told me based on the assessment they would be changing my child from LD to MR (he actually used the words ~ I've never used the R word in my vocabulary since then). As a parent in that moment, it is like someone pulled the floor out from under you and you stopped breathing all at once. From that moment on the "team" mentality was almost impossible, as a parent I was on the defense from then on, until finally YEARS later when I  realized, everyone here wants the same thing. 

I feel in the beginning we had a lot of "old school" teachers also, that weren't fully supportive of inclusion and all that it involves. Once we had our diagnosis, we had many teachers just read a small synopsis on Fragile X and determine from that what my son would and would not be capable of......like, "he won't ever be able to read ~ so we will just work on singing songs about the alphabet" (I am not kidding, this really happened, we had to teach him at home how to read).  "He won't ever be able to sign his name, so we won't work on penmanship or handwriting ~ he can do most things on the computer". "He won't be able to understand the math so we will just use a number grid and calculator". I honestly had one teacher at a teacher conference, tell me how my son went through the corn maze at the pumpkin patch and MADE HIS WAY OUT OF IT, like it was a miracle of some kind that he has common sense. These things also did not help with the "team" mentality. 

I believe there should be more training for sped teachers and teachers in general, for a while there were all sorts of teachers going to training about autism, but not on much else. I , as a parent, had to educate and share information with my childrens' teachers, psychologists, paras, and speech therapists. Very few teachers took an interest in actually learning more about it, or how my children learn ~ even when the advice was coming from long time experts in the field of Fragile X.

Now, I know that there are MANY diagnosis' and obviously one teacher can not be an expert in 50 different learning styles or strategies. But, I know as a parent when we would find the one teacher that did take the time to learn ANYTHING about our child's specific condition, it meant the world to us and most of those teachers will be our lifelong friends, we held pretty tight to them and truly found that "team" mentality due to them just taking a minute to care. 

As far as it being effective, I'm still not sure ~ like I said before there are many diagnosis', and many strategies I'm sure for each one. Besides the diagnosis aspect kids in general have different learning styles, and once again I realize a teacher can not possibly teach 30 different learning styles at once. 

I do feel like if a child has a certain condition and there is research, or conferences or pod casts available there should be some representative from their team in attendance. If the only representative from their "team" is their parent, then the people responsible for the education of the child have no choice but to listen to the parents,  read through their notes, and try to implement proven techniques for the child to get a truly Individualized Education. 

I had a doctor once tell me that he is a general practice doctor, which means he knows a lot about nothing, and not much about one certain thing. He said he feels like, I am the parent, I attend the conferences, I speak to other parents of Fragile X children, I probably know what is currently working or not working, so he appreciates all the things I send him and he reads them, but when it comes down to it if I am asking to try this medicine or this therapy, he knows I have fully researched it and he will try it. 

I wish that everyone saw it that way. 

So, I think the assessments are fairly adequate. I do not believe that any child has an actual "Individualized Education Plan", there aren't enough resources, teachers or aides to make that happen. 

I think things would run a lot smoother if from the beginning parents felt like they were in a real "team" situation. I'm not sure how you can make that happen though, most parents are defensive of their children. It may be helpful to have the people involved with the early part speak to some actual parents, get some insight. Try to make that whole process way more personable and less clinical. It is hard to understand how a parent feels, I know for me I had a very long grieving process (that's essentially what it is) you have to grieve all those plans and dreams you had for your child. If the staff and "team" could understand that they must treat a newly diagnosed parent like a person dealing with a tremendous loss, it may get things started on the right foot. 

Things may be handled differently now, I sure hope they are. But, I know with parents in my parent group it is still all the same thing. 

I hope this answers your question.....I hope you weren't just looking for a yes or no! ;) I also want to add, we have come a long way since the beginning !