We are the Lucky Ones

We are the lucky ones. 

That phrase is hard for me to say. There are a lot of things in our family life as a special needs family that are not easy. There are times I don't feel lucky. There are times I want to scream. There are times I want to cry. There are also times I laugh and laugh because we are having so much fun.

I say we are the lucky ones because it's back to school time. That time most special needs parents dread. Most are prepared for a fight. A fight with teachers.  A fight with school administration. A fight for the future of their children.

I am a member of special needs parent group on Facebook. I have already seen post after post of parents who have to fight to get their kids an education. Some schools don't want to have to figure out services. They want to bus kids elsewhere. They don't want to hire staff for those kids who require a one on one paraprofessional.

We are among the lucky ones, because so far, we haven't had to have these fights. It breaks my heart to hear the stories some parents have about the way their families and more importantly their children are treated.

We are lucky because our experiences in school so far have been nothing short of amazing. Maddy is on the autism spectrum. She is non-verbal. I've never been so scared in my life as I was last year when Maddy started kindergarten. Maddy has amazing paras who truly love and care about her. They communicate with us through a notebook we send back and forth.  And luckily, those same two paras are her paras this year. Maddy is now in first grade. These two women are like family.

I was nervous this year, as there have been so many changes to staff this year. Maddy has a new case worker, a new principal, a new occupational therapist, and of course a new teacher. That's a lot of change for a kid who does well with routine. So far, things have been great.

We talked to the new principal earlier this year about sending Maddy's i-pad to school. We recently purchased one and put a very expensive communication app on it. This app is a PODD system that is exactly like the one the school started her on last year. It has the same type of pictures. I know some schools refuse outside devices. Ours had no problem. I offered to sign a liability waiver (lawyer momma came out) if necessary.  He made it seem easy. I was so grateful.

We talked to Maddy's new case worker at the open house and I felt good about the meeting. We had some concern because we'd heard Maddy was going to have a new para. She was quick to inform us that it was someone Maddy had worked with in the past and that she would not put someone who wasn't familiar with Maddy with her. That took a huge load off my mind. It turns out it worked out that Maddy got the exact same paras she had last year.

We are lucky because our school is inclusive. I know there will be bullying some day. It's inevitable with kids as a phase of life to tease and make fun of others. But right now, so many kids know Maddy and always say hi to her when we are out in public. Staff, kids and parents I don't know routinely say hi to Maddy and smile at her. At Maddy's kindergarten "graduation" program last year, staff (including the music teacher) went out of their way to include her in the program. Each kid had a line to say. Maddy's line was recorded on a taking device by her teacher and Maddy got to push the button to replay it. Things like that don't happen everywhere. 

I am so thankful that we live in such an inclusive community.   I am so thankful for school staff who love and care for our daughter everyday. THANK YOU from the bottom of our hears for loving our daughter. You are what education staff everywhere should embody. In this way we truly are the lucky ones.

Annual IEP Meeting

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We had Maddy's annual IEP (Indidudual Education Plan for those that don't know what that means) at school the other day. I will admit my feelings on these are mixed. I mentioned to my husband the other day that I feel like I don't even know what she does at school most of the time. Maddy can't tell us what she did that day ( even though I always ask her.) Admittedly, I don't call and talk to the teachers on a regular basis, so some of the fault lays with me.

That being said, the meeting went really well. We had some good feedback on how Maddy is progressing, as well as some honest discussion on things that need to be worked on. Maddy's speech pathologist had notes from many of their sessions. Those were huge for me. Reading over those little notes was a great way to stop and actually look at how far Maddy has progressed so far this year. For example, being able to climb the stairs. At the beginning of the year, Maddy couldn't walk up or down stairs just holding onto someone's hand. She was still crawling up and scooting down. Now Maddy is practically an expert at walking up and down the stairs with one hand on the railing and an adult holding the other hand.

The point is there has been progress. I get caught up sometimes wishing there was more progress, that it would be faster. But Maddy's always marched to the tune of her own drummer. She will not be rushed if she's not ready for something. I wish I could say the same! :)

I do feel the plan this year is good for Maddy. She is already going to ECSE (early childhood special education) classes twice a week for two hours. They are recommending she go to pre-school (or Discovery Time) two other days a week. That means she'll be going to school four days a week. I think that Discovery Time will hopefully help her socialize a bit better with other kids. That's already been seeming to get better and better lately. Time will only tell.