So, we had a formal diagnosis from a Developmental Pediatrician. She had told us that he would need OT and PT and help for his difficulties with social situations. He was already getting Speech through the school. I had quit my job and would spend the next 4 years researching school law to try to get them to agree to give him OT and PT. I also, during this time, was looking for places that I could get these therapies for him privately. The school kept denying him. His K teacher would say everything was fine in the meetings and then privately would tell me, "He has GOT to socialize, He has just GOT to socialize!"
I would respond with, "Well, he has GOT to be taught to do this, so why don't you get off the bench and help him to do this if it is so important to you!"
At home, during this time, I would help him with this.. I scheduled play dates for him a few times a week, that I would also attend so that I could help him to navigate the 'making friends' and 'socializing' rules. I took him to Birthday parties, which he would meltdown at... (he would fall to the floor and curl up in fetal position and not budge) -- we would have to physically pick him up, with him frozen in fetal position, and bring him into the party... find a quiet room where he could sit until his senses caught up to him and he was able to come out and try to enjoy himself. Sometimes he did ok and sometimes we would have to leave. My philosophy was, and has been, that I wasn't going to hide him away or let Andrew hide himself away... we would try something and if after a bit he still wasn't comfortable and wanted to leave, we would leave.. but we needed to at least try. It also helped that I met a lot of amazing people along our journey that also had a child on the spectrum and found out that they actually get along a lot better -- it is like they just have an unspoken understanding of each other and they don't judge each other.. they just enjoyed each others company and differences.
I also found during this time a wonderful psychologist that worked with kids on the spectrum. He started a group therapy for them and we would meet once a week. The kids would get together and learn appropriate social behaviors, learn how to 'meet' someone, learn how to share and take turns, etc. I would sit and talk with the other moms of the group while the kids were 'playing/learning' and we all got a lot of great ideas and support from each other. The psychologist also did some more extensive testing on Andrew -- some that his Dev. Ped. didn't do, so that he would know better how to help Andrew. He also agreed that there was no way Andrew didn't have Asperger's Autism.
Andrew had a wonderful teacher during his 1st grade year. She took time with him and worked with him and taught him how to write. She sent 'homework' with him to practice at night with correct hand grip of the pencil and how to form the letters. He worked hard that year at learning 'how' to write. It took almost all year, but he did it. He still couldn't write well, but he was finally trying and learning. We were finally able to get some help from the school with his sensory issues and even got them placed in his IEP, like: due to Andrew's sensitive hearing, he would be forewarned of any and all bells/alarm drills (even if it was supposed to be a surprise one) so that he could place ear plugs (that we sent with him) in his ears; when the lunchroom got too loud for him, he was allowed to leave and eat at a table out in the 'main common area' or eat in the library; he wasn't forced to participate in activities that required him to put his hands in or even touch things that were gooey or slimy (I did, however, tell his teacher to 'try' to get him to do it, but not to force the issue). I was still trying to fight 'the system' and get him OT because even though he was now writing, he still wasn't writing very well. Annnddd... they kept denying it, because he 'could' write, even if it was not well.
His first grade teacher came to me one day and told me that Andrew was now playing in the mix of the kids and doing better socializing, that he was not isolating himself on the other side of the playground anymore. So I went to the school on a 'surprise visit' one day (which I did several times a month to check on things -- I also volunteered at the school a couple of times a week) to check him out on the playground. Andrew had learned to manipulate the situation... he would climb the monkey bars to the very top and stay there the entire 45 mins. they were at recess. Yes, he 'was' in the mix of the kids now, but NO.. he still was not socializing or playing with them. Kids with Autism are great manipulators, because they have to be in order to function and cope.
His second grade teacher was nice as well -- but wasn't quite as helpful as his first grade teacher. About mid-way through the year, she came to me and told me that Andrew needed to write better because she couldn't read his writing very well and that I needed to teach him this at home. (Now, keep in mind that I was still trying to get OT for him through the school system for this reason.) I told her that he needed OT, and she could help with that in these meetings. She said again that I needed to do it at home. I told her NO, because it was her job to teach him and that is why I sent him to school was for them to teach him these things. (Now, I was helping him at home, but in order to get help from the school system, I 'had' to do things this way.) She was not too happy with me.. but isn't that 'why' we send our kids to school .. to learn Reading, Writing and Arithmetic???
Andrew did start to socialize a bit more this year.. the Social Group Therapy he was attending after school was finally starting to pay off. He made a friend or two and would play with them a bit out on the playground. He spent the night away from home for the first time this year with his 'best friend' and did very well. I still hadn't been successful in finding appropriate OT or PT privately for him, and when I did find someone, his insurance would come back and say that it was the school's responsibility to provide this for him. It was also this year that the school started trying to minimize the only service that they did give him -- Speech. They tried to take it back from the 1 hour (2 - 30 min. sessions/week) to one 30 min. session -- pulled out of the class and one 30. min. session in the class setting. I was able to fight that and he got to keep the full hour being pulled out of class.
His 3rd grade year, however, they did take away 1/2 of his ST. His 3rd grade teacher was nice as well, and I was able to get more accomplished with her by doing things privately with her instead of it all being so formal in the meetings. I learned that it is not usually the teacher that isn't wanting to help, it is the fact that their hands are tied with the school board and the administration of that particular school. Any time I came to a meeting with a concern or problem, the board members and the principal would fight me tooth & nail, but if I took my concerns to the teacher directly, she was more willing to help in the private setting.. with what she could. Now, as far as therapies and other issues that the teacher herself couldn't do, like adding things to his IEP.. I had to deal with the board for these matters. His 3rd grade teacher did her 'homework' on Andrew before the school year started. Ever since he got formally diagnosed, I kept an updated form (that I typed up) of things 'All about Andrew'. Things he was good at, things he wasn't good at, ways to help him with socializing and with meltdowns, things that interested him, things to worry about and things to not worry about, etc. She read this and called me for more clarification on some things, she also told me that she had read several books about Asperger's Autism over the summer to give her some ideas of how to handle and teach Andrew effectively.
I also found out that teachers don't always know that a child has 'special circumstances' or an IEP unless the parent makes them aware of it.
At the end of his 3rd grade year, we had our normal 'end-of-the-year' IEP meeting. It was at this meeting that I was told that they were taking Speech away from Andrew because "he had met all of his goals". I disagreed, and told them that I wasn't seeing at home what they were 'supposedly' seeing in the classroom. They responded with, "Well, as long as we see it in the classroom, then that is all that matters. We cannot control what he knows outside of school."
WHAT?????????????????????? REALLY??????????????????????? That is the stupidest thing I have ever been told!
"So, you are telling me that as long as he can do math or read in the classroom, that it doesn't matter whether he can transfer that knowledge to real life situations outside of school?", I asked.
They all looked at me with a kind of smirk-ish grin on their faces, and just sat there.
I continued, "Well, I say that he has NOT met all of his goals and I am demanding that you keep him in Speech!"
The principal then told me that they would take me to Due Process Court and fight me on it. I told them to do whatever they felt was necessary, and in the mean time I would have him privately tested.
I said, "If the private therapist comes back and says that he has met all of his goals, then I will sign your paper to pull him out; but if she says that he needs to remain in speech.. then you will have to continue his services."
That summer I had him privately tested. (I also had Austin tested, he has had a lisp all his life and I knew he needed speech to correct it -- I also fought for him for Speech and the school kept denying him, saying that his was developmental). When the reports came back, the therapist told me that Andrew hadn't even met half the goals the school claimed he had. She also said that he needed speech for at least another year to year and a half. She continued to say that Austin's lisp quit being developmental when he was 5 years old (he was 7 at the time).
So, I took the paperwork back up to the school at the beginning of Andrew's 4th grade year and Austin's 2nd grade year and handed it to them in our lovely little meeting, that I STILL had NOT come to look forward to. (I would rather have all of my teeth pulled out while giving birth to Andrew again with NO anesthesia than deal with these people in these meetings!) I handed them the papers and told them what ST said.. that Andrew needed to remain in speech for at least another year and Austin needed speech for at least 6 months to correct his lisp. They didn't even look at the papers -- the principal just slid them back to me and said, "We are telling you, Mrs. Marks, that we are pulling Andrew out of Speech and Austin will NEVER receive Speech in the Ho. Co. School System, and there is nothing you can do about it!"
I was dumbfounded! I took my papers back and went home to mull over the events of that meeting and plan my next strategy of how to get what my kids needed. I was so tired and exhausted by this point, of continually trying to fight these people and getting nowhere.. I was stressed out and had horrible, violent feelings towards the administration and the BOE... I knew that this wasn't healthy -- for me or for them!
I talked things over with Richard when he got home that night... and we decided that if the school wasn't going to help then we would take him privately. After all, his insurance would pay for private speech with a denial from the school. So I started taking them both to private speech once a week for an hour. However, the only appt. I could get for them was during the school day. After about the 3rd week of me pulling them out of school for private ST, the principal and the LEA from the school board approached me and said, "If you keep doing this, we will have you arrested for Truency."
I responded with, "You can't have me arrested for Truency, because these are Dr. visits and I bring you a note every week!"
"We can have you arrested, because these people aren't technically Drs., they are Therapists and even if we decide not to have you arrested, we will fail your kids for missing too much school." they said.
My kids were straight A students... and the school board had just told me that they would fail my kids who make A's all year because I am taking them to Speech?!?!?! Really?!?!?! I honestly didn't know what to say to that... I was speechless. I am being threatened of going to jail or having my kids held back because I am taking them to NEEDED Speech appts. that the school should have provided to begin with.
Rich and I talked things over that night when he got home from work and decided that THIS was "the straw that broke the camel's back" -- so to speak. I just couldn't do it anymore. I was SO stressed, angry, upset, and confused that a school system could do this and be this way to a child that needs help. We decided to pull them both out and start home schooling them. They only spent about the first month of school in the public school system before we (both) went up there to sign them out for the last time. The administration seemed confused that we were withdrawing them... they said something else to me that I thought was just pure stupidity .. they told me that it would be hard, because I would have to keep up with their attendance and that was a real chore. When I got the paperwork from the Board Office the next day and saw how extensive it was to log their attendance.. I had to laugh.. I put a check mark in a box people.. Yeah, that's REAL hard! .. LOL!
After I got them home and started teaching them myself, I soon realized that Andrew wasn't learning like he should have been doing in the Public School system either. He couldn't do long multiplication or long division. So I had to back him up and reteach him these things before we could move on with the curriculum. It took about 3 weeks for him to learn it and then he got caught up pretty quickly.
I also found places to take him for OT and PT.. now that we were no longer in the PS system.. I could get his insurance to pay for these therapies. So Andrew was now getting ST, PT, and OT as well as still going to his social group every week, and Austin was getting the ST that he needed; and I didn't have to clear it with anyone -- nor did I get threatened with being taken to court or being arrested or having my kids held back for taking them to therapies that they needed.
Life was now on the up swing and we couldn't be happier. I found out a few weeks later (from Andrew & his psychologist) that he was having trouble with the changing of classes anyway. Yes, the fourth grade classes here start 'changing classes' (twice a day) here. He would have 3 different teachers for his academic classes and then the ones for P.E., Music, and Art as well. It was just too much for him.
This has been our journey with Andrew, so far, and we have now been home schooling for two years and we LOVE IT!!! I am not as stressed out, and I can do whatever I want to with my kids and don't have to answer to anyone! I can make sure they both get what they need to thrive and excel in their lives without anyone telling me no. I am happier, my kids are happier and we are happier as a family! We have found some amazing people in a home school group here and have participated in a co-op and several field trips with them.
Next up -- our journey with Austin... yes, we had difficulties with the school dealing with our youngest as well (aside from the speech issue).
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