"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Tuesday, September 29, 2009

Why does it have to be so difficult?

Why does it have to be so difficult to work with the school regarding Carly and her education? I really hate that it's so difficult. It really shouldn't be. Except that they think, they know, my daughter better than me. Just because they have read articles about some kids with Down syndrome. They believe that holds truth to all children with Down syndrome.

The problem?? Well, Carly uses ASL signs as her main form of communication. Yes. She does talk some. She is adding more and more words to her vocabulary every day. She knows her ABC's. She knows her colors. She knows all of her shapes. She can write her name. She can write the alphabet. She is beginning to spell words. She can even recognize words that I spell out loud to her dad. So she won't know what were talking about. For example: Carly really dislikes it when it rains. I spelled r a i n to Paul the other night because we had a chance of rain in the forecast. Carly heard me and yelled, "NO" and then went on to sign "sunshine".

All I want the school to do is learn some signs. NO ONE knows signs at that d@%* school. Not one single person. How is Carly suppose to learn when know one can understand her??? She is getting frustrated and actually very bored. She is even falling asleep in class. Which is so not like her.

Last week we had a meeting with Carly's 'team' of educators. We got nowhere fast. The principal suggested putting Carly on a reduced schedule to see how she does. We decided we would try that for only a couple of weeks. Well, Miss Carly is thrilled to be coming home. She is happy and playing. She is writing, coloring and doing her puzzles all afternoon. Oh, and she is taking NO naps while at home. She hasn't fallen asleep one single time since we started this last Wednesday. That tells me. My poor daughter is so very bored at school.

The school will not address my questions regarding them learning signs. They completely ignore that issue and turn the conversation quickly onto another subject. I've even provided them with resources regarding ASL signs. Still, they ignore me.

Today I got in touch with a local advocate group. I was told to fight tooth and nail to get an interpreter in the school. I was told that one should have already been in place. Without one, Carly is not getting the appropriate education (per F.A.P.E) that she is entitled to. I was also told to fight to revamp Carly's curriculum to her needs. So far, they have not done this. Again, Carly is not getting the appropriate education that she is entitled to.

As much as I hate having to get nasty with other people. It's time to get down and dirty. I hate that the school is forcing my hand at this. I really don't like it when I have to get nasty. However, I can and I will. I've had to do with doctors many times over, so I'm not really afraid to. I just really hate that it comes down to this. I will now be labeled "that mother" in the eyes of the 'educators'. Albeit, the advocate group put it best, "Carly is regressing". In fact, the advocate group said they were surprised that Carly isn't having behavioral issues as a result of being neglected/cheated out of learning at school.

This is why I went to that d@%* school back in the spring. I wanted to make sure that moving Carly on to first grade was the right move. I was assured that it was. Well. Doesn't look to me that it was the right move. Not if they aren't willing to meet Carly's needs. Needs that will likely need to be altered throughout her school years. I realize that Carly may not be able to keep up academically with her peers, but she is very capable of learning. She has proved that a million times over.

As for the reduced schedule. I will be putting a stop to that. It has bothered me from the first day of the trial. Carly is missing all of her xtra's. Such as ~ gym class, music and art and recess. Those are huge areas for social growth. Carly needs that so much.

Sure wish I knew why it has to be so difficult.


Ria said...

that's a bummer that the school won't work with you on this willingly. Basing their knowledge on articles about Down syndrome alone truly isn't enough to determine what Carly needs. I hope they listen to you soon. You know her best. A reduced schedule offers less opportunities for Carly to develop. The schools must realize that our kids need more opportunities, not less.
How frustrating! I hope it all works out in the end.

My name is Sarah said...

This is Joyce. Did you hear me screaming up there in Michigan?!!? I cannot believe they suggested a reduced schedule. I am just amazed at what some schools get away with. Go get 'em mamma. Darn, you should not have to get nasty when it comes to your daughter's education but gosh they are taking advantage of you. It sounds like you have a good handle on what to do. Good luck!!

Tausha said...

Oh my gosh, that is horrible what the are NOT doing for her. I would definitely get in there and fight tooth and nail. It does stick that you have to do that but sounds like your are going to have to. I believe these schools get extra funding for the program so they need to be using those approapriatly. It wouldn't be hard at all for them to even learn basic signs. That is just horrible that they are ignoring you on it. Wish I were there to fight them with you.

Lacey said...

How frustrating. Why do people have to be such a pain? You go momma.

Shari said...

Oh my goodness! Where we live the school adapts to all students' needs. That is unacceptable behavior! Plus,I believe what they are doing might be against some laws out there, too. Keep fighting for her! We have had to do that with Drs.for our son, but never with the school system. That is so not fair to Carly! She is one beautiful girl!

Cammie Heflin said...

I am absolutely floored by this! This is no different than the school providing a special teacher for an ESL student! I cannot imagine having a speech therapist that doesn't know some sign and encourage it! I have to convince some parents and other educators that sign is a very appropriate way for their child to communicate, but once they get used to it they are so thrilled that they can see what the child knows and they can talk with the kids. I am appalled at Carly's school. I wish I could come and fight for you!

Mary said...

Wow. I have to say that this is one of my biggest fears regarding my daughter, Leah. School. I'm already scared and she has two years before starting Kindergarten.

Michelle said...

oh I wish I could give you a hug! I'm so sorry for what you and Carly are going through :( I agree with not doing the reduced schedule since she is missing on the social aspect of those other classes. And if ASL is her primary form of communication it seems like she should have an interpreter. Could you make them a booklet of all the common signs she knows just as a starting point? I hope this all gets straightened out!