Graduation is a happy time full of the wonderful year end parties and award ceremonies and activities! Or so they say . Ha I don't think so but I will let you know next year when my baby graduates. My so called normal child, Errrrmmm yes lets not get me started on my views on that ! My non disabled non special ed daughter! Senior year wasn't a great and momentous occasion for Boo. It was filled with stress , pressure, flaring depression,meltdowns and aggressive verbal behaviors. I really don't think she enjoyed any of it. There was so much pressure and so so many deadlines , they pushed the students even harder the farther into the year they got .it was fast paced and while many students thrived in this senior year atmosphere boo did not.I certainly didn't.
And the moment she graduated and I snapped the picture there were no sentimental tears of joy and sighs of happiness.No smiles and hand patting from one proud parent to another .no we did it, and proud smiles of our work is done . Nope I do't live in that ideal world . we sighed wearily and prayed no one would accidentally knock her over in the ensuing crush. I sighed in relief that she didn't fall. that her crutches didn't get caught on the protective floor mats, That she didn't have an asthma attack and that she actually made it out of her chair .It was close there for a while. wouldn't it have been grand if she didn't graduate because she couldn't get out of her chair ?, because she struggles with folding chairs and needs to use it as support and leverage to stand and so it buckled ,I had a vision of the last folding chair she sat in as it folded up on her with in it and both chair and boo crashed to the floor !!! because she lost her balance trying to stand wearing a slippery synthetic grad gown? Apparently they couldn't find her a non folding non slick chair that she could actually get out of. though the band had them and they have used them for other occasions . But such is our life.
In first grade we had a seating analysis done , the school couldn't of coarse pay for that even though they have therapy services and it was for school. We had the analysis done at children s hospital by a developmental pediatrician and her department. We had to present her entire medical record and they went through it all. It was huge ! After they reviewed all the records and lengthy questionnaire and all other documents , we drove the 4 hours to the hospital and were interviewed , not just boo the whole family . they did an interactive interview with boo and evaluated her fine and gross motor skills and lots of other stuff . this was no slapdash review,
I presented the results from the developmental pediatrician and her department at children s hospital to the therapist at our elementary school. it stated she needed a firm chair with a straight back and hard surface to support her body, due to poor muscle tone a curved plastic chair would cause her to expend energy all day in order to be able to sit up straight and she would slide around in it ,It was explained that boo had limited energy an needed to conserve energy as much as possible they requested a non plastic chair with a 90 degree angle that wasn't so tall that she couldn't place her feet flat on the ground . there was even a diagram included with the l shaped straight back that would put her posture at a 90 degree angle with feet flat against the floor . it was pretty clear and simple with minimal medical jargon. easy peasy!
the next day boo came home in tears she was sobbing and screaming because she hurt so bad. she was angry because her sit on the therapy thing. I was totally lost. I had no idea what was going on and and couldn't fathom how asking for a chair led to my daughter hurting so bad from sitting on a pillow thing that made her hurt because she had to work hard so she didn't fall off of it . I went down to the school the next morning and talked to her teacher.The teacher asked me what had changed since ;last time we had talked. I explained the plan , she gave me a puzzled look and said they had not shared the results or the plan with her , had just told her that boo needed to sit on this all day , she said that they had come in after lunch and after 2 1/2 to 3 hours she had taken the thing away because she was afraid boo was going to fall over , she told me she wasn't a therapist but this seemed to be causing her more problems that it was solving and she didn't see how her falling out of her chair because she was exhausted and how focusing all her energy to stay seated was safe or good for her educationally . I assured her i agreed.
I then talked to the therapy aid who in her great wisdom decided that since she didn't have enough muscle tone to be able to sit in a curved slick plastic chair that she needed to work harder so she told her that she had to sit on a Frisbee shaped disk filled with something very squishy , all day.I sat on the damn thing. you had to constantly re-balance yourself and I could feel my muscles working to keep myself upright. I was livid. I called the therapy supervisor to complain and was told that this was a good decision. she didn't need adaptive seating she needed to work harder to strengthen her muscles.they were after all trying to help her.She implied that good parents would want to help their child improve.We had to refuse the device and state that we didn't want our daughter to use the strengthening device and state that we wanted her to have an adaptive seating , she said that they didn't have anything that would be suitable and it might take some time to get boo adaptive seating. I still haven't heard back from them on them having found said adaptive seating yet . she just graduated high school
Finally the teacher had her husband also a teacher in another school in our district go into storage to find her a simple wood hard backed chair. I had to sign a paper stating that I refused to use the therapeutic device provided and it was stated to me that I was refusing the device that would help my daughter get stronger.They made it sound like I was a bad parent and refused to acknowledge the study done by children's hospital and the recommendations for the adaptive seating.
yes stuff like this does happen. it happens all the time all over the united states and yes they can get away with stuff like this because most parents don't know their rights. there are no parent rights groups in rural communities. parents are over whelmed and struggle day to to day .Many times parents are faced with domineering personality's and and are simply bullied into believing they have no options or choices. Principals and school district staff have an agenda that is all about finances and will resist spending large amounts of money on something that only one student may use or need , even though they are required by law to do so .I think that we as parents of a small rural community trust that our best interests are at heart.The staff of the schools and agencies who serve our schools are our neighbors and have lived with or around us for years . we forget that politicians and government officials have agendas and guide lines that may not be in our best interest and so may times by the time we as parents find out its too late.
Need less to say my daughter didn't make a lot of progress during this time and fell even farther behind.
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