Made of Gray

Days 5-7 + Parent Teacher Meeting

Holly D Gray19 Comments
I am still a full time fixture in Caleigh's classroom acting as her one on one aide. Even with my presence and attentiveness there are still meltdowns.
On Monday, Caleigh wouldn't let anyone touch her. She wouldn't let me put her down. Each offense resulted in a crying fit that I had to diffuse. Another issue was participation. Caleigh refused to answer any question that the teacher asked her. The teacher asked her to choose the blue square and Caleigh just sat there for a moment. Then the more the teacher asked and waited the more angry Caleigh became. Eventually she did hand over hand with Caleigh and answered for her. She knows her colors and has for two+ years now. It was just pure defiance.

When we got home I asked her why she wouldn't answer the teacher. Caleigh told me "I don't like it" then she spelled out "question." So because she didn't like the questions she refused to answer them. I talked with her about the situation and explained why it is important to show everyone how bright she is. We also talked about following directions.

Tuesday, was a fairly pleasant day. I was present all but 10 minutes. The issue for the day was that Caleigh refused to sit in any of her chairs. Power chair, Child-Rite chair, and Special Tomato chair. I would ask her if she wanted in her chair. She would say "yes." Each time I went to sit her down and get her strapped in she started crying. She actually got so upset that she retched for the first time at school. I could tell that it freaked out the teacher a bit. She reassured me that Caleigh didn't retch last Tuesday when she cried so much. Good to know.
So when we got home I sat down and asked Caleigh why she didn't want to sit in any of her chairs. She spelled out "everyone sitting red chair." The next day I paid attention more and found out that after story time the teacher calls on each kid to head to the table and sit in a red chair. Story time chairs are blue. So all the kids sit in a red chair....except Caleigh. Physically she is unable to do so without someone's support. The school isn't willing to let her sit in these chairs. So putting together some of the pieces, I'm assuming Tuesday was all about wanting to be like the other kids.

Wednesday was more of the same. The orientation and mobility teacher came by and we watched Caleigh drive her power chair around the halls. The PT also joined in on the evaluating. By Wednesday afternoon I was just flat out exhausted. Caleigh's last day on the antibiotic for bacterial overgrowth was that day and her poor little bottom had a very raw diaper rash. She also complained of her tummy hurting. By that night, I had made an executive decision to not send Caleigh to school on Thursday.

Each day seems to bring some new emotional response from Caleigh.

For me, three hours of preschool drags on forever. The first few days were just entertaining. Now the three hours are slowly making my skin crawl. The routine and the physical transitions with Caleigh are tough. The hardest part right now is first hand watching the emotional time she is having. I have way more knowledge than any parent needs to have of their child's classroom too.


Which leads me to the parent teacher meeting.

It's not good. Not good at all.

Thursday morning I jotted down some of our concerns. I planned on going in asking my questions and maybe taking 20 minutes of her time. I had a game plan. I was already nervous about it. An hour later, I left the building in a state of shock.

I've always been a good listener. I'm not the person to spout off the first thing that comes to my mouth. So when I sat down in Caleigh's preschool room and the teacher started rambling about next year's placement issues and assessment related problems....I listened.
She started off with where we wanted Caleigh to be placed next year. Apparently, this has been weighing heavy on her mind. There is regular kindergarten at our home campus {our placement of choice}, there is a supported kindergarten {not even close to our house}, there is duel enrollment where she gets some services at school and we home school her. I sat listening to placement options and what the teacher has to prove to the school officials for Caleigh to be on her home campus, for 25 minutes. Which in itself is a load of crap. Appropriate education, IEP, least restrictive environment and all.....

I finally decided to make a move for my questions when she switched gears and started talking about Caleigh's iPad. I thought great, perfect time to chime in about our concerns. I thought wrong.
She started talking about a study that happened in the late 80's early 90's when facilitators were starting to be used. A facilitator is someone who supports the non-verbal person's elbow so that they can use some sort of communication system. This isn't new news to me, but I sat listening. Apparently the study found that when the non-verbal person was the only one who could see the object in question there were all kinds of errors, but when the facilitator was involved and was aware of the question the answers were often correct. Basically, subconsciously the facilitators were giving the non-verbal person some sort of signal. She then proceeded to tell me that because of those findings that she could not test Caleigh using her iPad the way that she currently uses it supported in our lap. She feels that Caleigh needs to be able to communicate independently for her to properly do her assessments. The sooner we can get another device the better.

At this point I could feel my blood starting to boil. Not once did she say that she believed Caleigh was using the iPad for herself. Not once did she say that she thought I wasn't making Caleigh's movements for her. Not once did she say that she believes Caleigh already knows the preschool curriculum. Everyday I would sit in her class holding the iPad for Caleigh. She answered questions, she spelled out words, she asked to go potty. I kept the teacher and the aides in the loop. I felt like an idiot. This woman and her team feel that I am answering all of Caleigh's thoughts for her. I will say that she did not come out and say those words specifically, but it was completely obvious by her tone, body language and what she didn't say. They do not believe that a 4 year old that is non-verbal, in a wheelchair and has a vision impairment could cognitively know what Caleigh knows. How do you change the stereotype of mental retardation in the education system?
It then hit me that the lack of interest in the iPad pretty much stopped the day that I did the "training." The training that I talked through and Caleigh cried through. Not once has anyone sat down and tried to use the iPad with Caleigh the way we do. This was on my concerns list. I have a feeling a lot of this comes from the PT who also happens to be the AT person. She started off that little 'get to know Caleigh's iPad' session by saying "now for those of you who aren't familiar with the iPad, it was never made to be a communication device. Some parents have taken it upon themselves to make it one." How do you change an educators mind that has been doing what they do since before I, the Mom, was born?

I did go through some of my concerns. Mostly those not iPad related. I wasn't happy with most of those answers and they all really go back to Caleigh being able to communicate. One concern that is a problem, is that until all the therapists have done their evaluations and we have an ARD, they can not train the teacher and aides how to transfer, position and help Caleigh. Why would I send her to school with people that have not been trained to handle her situation? Another boiling point was when I talked about going to our home elementary school and meeting with the principal early next spring. She quickly stopped me and said "You don't want to be that parent. The kind that is showing up all the time." She then told me that she wants to make the connections, with whatever placement she decides on, first and before we do. Huh, has she been around for the last two weeks? I am that parent.

I know that there are IEPs for a reason.
Individual Education Plan is just that - Individual.
We can fight this. We know how.
Do we want to fight this? That is the question.
Our wounds are fresh. So right now we don't know.

For the past 4 years we have fought to keep Caleigh alive. Something most parents don't even have to think about. It is times like these that really take us back to the place of life and death and just how fragile and connected the two are. It makes fighting to prove your daughter's intelligence and communication skills to people that have only known her for 7 days absolutely absurd. It makes balance in our life and happiness for our chronically ill child more important than assessments and placement.

I have a slight grasp on where the teacher is coming from regarding her worries on testing. If she has been doing this as long as she says she has, then she knows that there are modifications that need to be made and that there are tests that Caleigh will not be able to take. Why exclude her from an appropriate education just because you can't fill in a bubble and fit her in a mould. I feel like she has already given up because she is overwhelmed. What I don't understand is the idea of leaving Caleigh without a voice until they find a way for her to speak independently. Independence with communication isn't a new aspiration for us. This has been our goal from the beginning, but leaving her voiceless in-between is ridiculous.

Now let me talk about my facilitating the iPad for Caleigh. There are days that I do hold her elbow steady and raised slightly so that she is able to reach the top row of Proloquo2Go. There are days that I just hold the iPad and nothing else. There are days that she can sit on the floor with her truck supported. There are days she has to be in our lap. There are days that she rocks using a wheelchair mount. There are days that she can't hit what she wants using that mount. This is Dystonia. This is Caleigh's muscles, jerks, twitches and weaving. This is why we adjust her equipment accordingly every single day. This is Dystonia. Every. Single. Day. Freaking Dystonia.

I questioned our use of the iPad for all of about an hour after my meeting. I then decided that no one, not one person, and not a group of people that have been in the same room as Caleigh for 20 hours total over 7 days can tell me that I am talking for my child. Caleigh has told us when her stomach hurts needing medication, when she had an ear ache which ended up being swimmers ear, she has named all of her baby dolls, one of which is Baby Holly, and she chooses to do activities on a daily basis that I would rather not do. The list could go on and on. Caleigh's behavior took a one eighty as soon as she was able to communicate. I am not subconsciously talking for my daughter. Neither are her grandparents, our wonderful helper and all of her current therapists who were willing to take the time to learn from Caleigh and use the iPad with her. I refuse to let those people take away what we have worked so hard on for the last year and a half. Absolutely refuse.
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