Feeling Pretty Beat Up

I was really looking forward to January and being able to get our family life back to somewhat normal. With both girls in school, I would be able get away from the in-home therapy and get back to work. If I had any idea that I would be just thrown into a school district system with such lack of regard, I would have been searching for other options from the very beginning.

I completely understand that the district needs to do their part and has their procedures. I also completely understand that they deal with a lot of parents who turn to them for guidance as to their child and obviously go with what the district first recommends. I think this is ultimately the goal for the district. I mean, after all, it's "their" district - their assessments, their rules, their regulations. Right?

Wrong. Not when you are dealing with a parent like me who is so actively involved in all aspects of her therapy. I've read books, googled my head off, asked hundreds of questions to all of her therapists, doctors, regional people, etc. I think I've missed 3 ABA sessions over the course of that 6 month program. Not bad, especially when you consider there were around 120 sessions at 2 hours a pop. I never once missed a speech session - and Mary treated Raquel once a week for 11 months.

Don't get me wrong - I'm not out for any Mother of the Year awards. I'm just trying to make a point. I am not one of those parents who left the room when a therapist showed up for a session to have a much needed break from it all. I was one that plopped myself on the floor and dove right in, took the best mental notes so I could stay consistent and show my family how to stay consistent. And I know my daughter best.

It is written in the IEP notes with the district that: "Parent is concerned about Raquel's sensory needs." I stressed to them that I was worried she would get hurt - not a falling down getting hurt, but being pushed out of her zone, escalating, and then the self-injuring behaviors would start and they would not be prepared to handle that. At that point, my Educational Consultant Bev, suggested that the district implement a Behavior Support Plan, which I, along with the ABA Team, totally agreed with. The district completely dismissed this, stating that she's not going to be pushed into doing things she doesn't want to, etc. etc. and stated in the notes: "The parent has requested that the IEP team meet again to review her progress in the current program. During this meeting, in conjunction with reviewing her progress, the IEP team will discuss Raquel's sensory needs and whether or not the current goals are sufficient to address these needs or if she requires a Behavior Support Plan."

Why am I ranting today? Because today was Raquel's first day of school. It started out really well. Me and Gabby watched, with tears in our eyes, her holding her new teacher's hand and walking with the class to the classroom. I then took Gabby to school and, was literally two minutes away from work, where I had waiting client, when Raquel's school called and said I had to go pick her up - after her only being there for 1 1/2 hours.

When I arrived, Raquel was on a padded mat with some pillows and the teacher was trying to hold her down to prevent her from injuring herself. Knowing that restraining her will work in the opposite - because, I know my daughter - I took her and did the other things I've been taught to do. Once she was able to calm somewhat, the teacher asked me, and I quote, "Where is your daughter's Behavior Support Plan?" It was at that point that I burst into tears.

And as crappy as all of this has been for me, let's not forget the little one who's outcome is at stake. How unfair to do this to a child - to send her into a classroom setting without them knowing what her potential behaviors are and how to deal with them. This was the first time the teacher has ever met Raquel. She briefly read the IEP, but besides that, has no clue what works and what doesn't. It sounds like it's not fair to the teachers, either, and I could really feel her frustration with it all when we left. She stressed to me that she doesn't want me thinking Raquel isn't suitable for her class. She just doesn't want her to get hurt on her watch. Do you blame her?

I also felt really bad for the other kids. What a hard thing it must have been for some of them to see. It's not fair to them either. This is supposed to be about the kids and getting them the best help available to provide positive outcomes - not just agreeing to district policies and procedures.

So, basically I'm back to square one. Part of me thinks I should just keep her home utilizing my respite care until after her Neurological tests are complete in late February and we can figure out what is really going on. Another part thinks I should look into more of a home daycare setting, that maybe she's just too young for a school transition right now. One thing I do know is that she needs to continue her therapy, even if I need to bring her somewhere to have it done, so I'll be looking into that option as well.

So exhausting...