Tuesday, October 29, 2013
September 14th was my last update. So needless to say life has happened since then that has kept me away from my blog sadly. However not all of that is for a bad reason. I have taken on a full time preschool position, H has been busy in activities along with Seanman and between all of us in school we just need to prioritize.
Over the last few weeks I have been posting about the schools results on what they believe H will be labeled as disability wise. Hold on, you say, "wasn't he already diagnosed with PDD-NOS and SPD and APD?" Sure of course he was after two days of testing with other testing sprinkled in there by trained doctors and neuropsychologist. So basically I have taken their word as gospel at this point because well this is what they went to school for this is what they are certified to do. However the PPCD program feels they must do their own evaluations and testings on him to ensure the Autism diagnosis. I wonder if those who are deaf or whom are intellectually challenged have to go through this same series of testing. I mean seriously how many times must a child, a family endure this testing?
When I posted on H's page late last week about meeting with the school to go over their test results most people who responded were baffled that he needed to be tested despite what doctors, trained professionals had already diagnosed him as. I was warned of this from ECI prior to going through our initial meeting and our ARD. I was worried because what if they happened to catch him on a good day and they say he is fine and that I am crazy? I still would stick to what the doctor had said and just continued to fight our fight for him. When he was accepted I was so relieved and thought most of this was behind us.
Several families said that when their child entered the special education program all that was needed was the actual doctors diagnosis and all the results that were given. Makes sense right? I mean I know their job is to base our IEPs off of their lacking abilities and to get a clearer picture of the child's needs. However while I respect that as it is very needed to help my child succeed I feel that they are trying to over ride everything we have spent countless hours obtaining, the mucho money that was spent and all the time we had to travel. Today for example a friend of mine here in Texas received a call from their child's school stating since their child had the best penmanship in the class and was so very smart their child was not Autistic. This was by far the most insane thing I had ever read! Granted my child does not have much in the way of penmanship he certainly is super smart. I am sure hoping in this instance it was a very unqualified teacher calling and not someone who is trained and qualified who made this remark to the parent.
If you have seen one Autistic child then congrats you have seen ONE Autistic child. This is spectrum disorder. There are various levels of this disorder from severe, minimal to no self help skills or communication skills and lacking even the most basic in coordination to moderate/mild, more self help or fully functional skills, communicating and fully coordinated. Does that take away at all from what the underlying disorder is? NO not at all these children all lack the same thing social skills and the basic ways to properly interact with others around them. That on top of other things is what this disorder is about.
Last night we went to a friends house for a Halloween playdate and to have dinner. My friend has a son who is a little older than H and he is on the more severe end of the spectrum. While he was more severe than H they both had similar quirks about them. Another little boy who was just a few months older than H came who was just diagnosed on the spectrum was more along the same lines of H as he was more verbal and same hyperactive but he was not as into climbing as H, and he had more meaningful speech, H had a lot of scripted speech last night or using phrases that he had heard us say and was using them. All three boys on the spectrum all three boys with various strengths and deficits. Up until that last half hour we were there it was the quietest playdate I had been to in a while as they boys didn't interact much did their own thing or were engaged in the movie.
I completely understand the school wants the full picture of what is going on with H. I mean who doesn't? However no matter what they come back saying it isn't going to change what we were told back in January. I am already a little leary of what will happen next week when we meet for our ARD meeting to discuss his results and his new IEP. I was told last week no OT was needed! He was in OT twice a week up until school started and that was only dropped because it was going to conflict with school. I plan to address this as WE (our team) fully believe he needs OT at school. Especially when it comes to the oral part of it. He sensory seeks this way and we want to make sure that his needs are being met with his chew tube and or Z-vibe, even being able to use his vest during those times help.
Before my naysayers jump in and tell me that I am being to hard on these educators I believe I am entitled to feel this way. I know what it means to be an educator. I am one. I do observations and assessments of young children all the time. However these are brief snapshots of their abilities and weaknesses. Does this mean I am qualified to tell a parent that their child is to disabled or just so far above the other children. I simply tell the parents of the red flag I see and encourage them if need be to get more help to ensure their child stays on track. I know that PPCD is for those with special needs so their qualifications are of course different, however sometimes I feel that they have become so immune to what we as parents have gone through with our child to reach the point we are at. They only see their aspect of it and forget that we are the ones that have endured this day in and day out and gone through the hell and back we have to get them all they need to help them do better.
Earlier this month Reach went to the AISD school board with our proposal to get more Autism awareness/education in the classroom. I am hoping that when this is approved these educators can really see more of what us as activists and families go through to help all these amazing, brilliant children who are such an important part of our lives. I am truly holding out hope that this will be the push we need for them to start seeing that regardless of what their papers say these are who these children are and no matter what level of the spectrum they are at they still need their help to get to where they need to be and meet or surpass those goals set in place for them.
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