Ramblings of change for the new year
As I type this entry into the blog, the cream churns in the mixer. Butter is in the making. I recall some years ago, a small one throwing black beans into the mixer as the cream was being churned. That should have been a sign, lol she has been mischievous ever since! Her sense of humor is as vibrant as her fits of anger. She is 10 now, her mental age is about 8, her emotional age about 5 or 6. I will never forget the words of the therapists on our first visit last March, in unison they looked at each other and said "FASD", not so much to me, but to each other. I was bewildered. The acronym did not ring any bells. I looked at the two as if they had just landed on Earth from, perhaps, Mars?
I asked, what does that even mean? As soon as I had, I had wished I hadn't. Fetal Alcohol Syndrome Disorder. Yes, now the acronym popped back in my head. I had heard of this, but only bits and pieces, I didn't know of any cases. Well, at least I hadn't. Working with the current geriatric population didn't really involve this diagnosis much. They announced their joint suspicion as the young one played at the same table we were sitting at. She picked up on it immediately. The therapist recommended many things and we certainly needed to start therapy of some kind as soon as possible. She was honest and voiced that the therapy they provide was probably not what she needed in the long run.
We began therapy anyway, it couldn't hurt, and I needed as much information as I could get. Life was very busy at that time. SIL, with confirmed dementia, had been moved to a care center not far from the therapy office, so I could visit her while they worked with my kiddo. Most of the days of therapy I did not leave the parking lot of the stables. This was horse therapy, right up the alley of this little one's desires. We participated in therapy for about 6 months. Each week they would ask how the previous week went between sessions. Truthfully, she was calm and collected at her sessions and a tiny tornado all the way home after them. It was a 30-mile drive home.
At one session I sat waiting for some kind of input from the therapists on what I could potentially expect for her in terms of life goals. She started to share statistics of other children who were able to move to assisted living situations as they aged out of the parents' homes, I jokingly interjected, that's alright she said she was living with mommy forever. This was met with a quick reply of "you don't know how true that statement probably is". So much for another "rewarding" therapy session. I knew my chances of ever going to Wal-Mart alone were dwindling fast!
As therapy continued, the fits when we were leaving continued to grow. No amount of bribery, scolding or silence changed them. I mentally added up the score on the way home from our last session. Dementia=2, Autism=1, Possible FASD=1, total persons with special needs=4, total caregivers available in the home=1. Odds were not in my favor. The next day I reached out to the pediatrician with the list of things the therapist suggested. He agreed to one of those things. A referral for a neuro-psychiatric exam was granted.
Six months after the referral was requested, we were at the testing site for the first day of testing. A whole lifetime after the first therapy session had passed it seemed, but it was only a few months. She was now a rising fourth grader with the social skills and desires of a kindergartner. Her mental abilities were varied when it came to schoolwork and subjects, add in her eyesight and it was a challenge as her strabismus was determined to be just that, strabismus. She had already had two surgeries to correct the alignment of her eyes, but one eye still remained stubborn.
At the end of the Summer, I headed to the school she had attended for second and third grade armed with a 19-page report of her testing. We started the school year with the reassurance that we had done all we could to be prepared for any new challenges. The first month went by smoothly enough, I received an email that they still had not recruited a SPED team. (This was not new news as the former SPED director had emailed me over the Summer and stated she and her team would not be back) Two months went by and some formal testing for the year required by the State was started for all of the students. The results were much what I expected for both of the girls, after all they did have special needs. Three months passed and parent-teacher conferences arrived.
This particular school had been having a challenge with keeping staff for the middle school portion of their students. One of mine fits into that group. I chose to do phone conferences as I don't have a good poker face when it comes to listening to a teacher belittle my child's progress. It also gives me the opportunity to say what I feel (while the phone is muted of course) and listen politely as the teacher voices her concerns. At the end of each conference, I asked each individual teacher what they knew in particular about each child. Did they know the child had an IEP? Did they know the one is Autistic? Did they know I had dropped off a 19-page Neuro-Psyche report complete with recommendations for modifications? To every question the reply was a pregnant pause followed by a disheartened, no.
I was promised a call back by the following Friday of changes that would be implemented for each child. No phone call occurred. A letter arrived documenting attendance for the youngest and implying further action would be taking place. I called the school and requested to speak to the principal, she was not available. All but two of the absences noted were appointment related. No one on the academic side seemed to care. I reached out to the district it took multiple phone calls to get a response. It wasn't until I had withdrawn the youngest that I received a call back. Too little, too late unfortunately. I had already enrolled her in the local district. The cons outweighed the pros, but they did have a SPED team, and again I dropped off the information to them several weeks in advance so that they could be prepared.
Three weeks into the change the little one was vehemently refusing to go to that place where "the teacher yelled all the time". I was furious with myself for even thinking this would work. I went to the school with the youngest, she refused to go through the door into the locked core of the building. Someone came to our aid and suggested we tour the building. As we walked, she pointed out the SPED rooms, I shared with the little oh that must be where you go for help. Simultaneously the guide said, "oh does she have an IEP? and the child said No I don't get any help". I started to seethe, or maybe it was more of a boiling sensation inside.
As we turned a corner and found our way into the SPED area where there were children from her class seated at tables with helpers, the SPED director came up to me and asked for a minute with me. She apologized for not having gotten to my child just yet. She gave no excuses and said there was no excuse. She had not read the report, she had not read the former IEP and she offered to start services immediately. An initial IEP meeting was set-up for that following Thursday, 2 days away. I was already planning our homeschool days in my mind. I remained calm and hopeful... not normal for me. I would mourn my days of solitude; I was sure of that. The older kiddo wanted to remain in public school, that would be helpful I thought.
That weekend we were blessed with the flu. I say blessed because with the flu you cannot go to school, so no meltdown would occur. I might have a peaceful day. I wondered how long I could have the flu in the house, it was a welcome and unwelcome guest at the same time. As it ran its' course through our home, I received a letter from the new schools complaining about attendance. That solidified my heart, and I typed out the withdrawal letters to the district. I was committed and perhaps should have been committed at that point. I dropped off the letters with immediate effect and filled out the district's own paperwork for each school.
That, dear blog, is how I got to this point... and also why these updates will go to weekly after the first of the year. Come on over and have a cookie... the neighbor shared plenty of them with us!
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