Today was the start of Layla’s Triennial IEP review. I say “start” because we didn’t finish in the allotted 2 hours so we will all meet again in a week to complete the 3 hour process that leads to signed documents at the end. There are so many feelings and emotions this meeting brings out. In the end, I truly believe that our team of wonderful professionals are all there to help and see Layla succeed. But the truth is, its a meeting that is inherently scary and full of expectations for Layla, clinical observations, comparisons, and…yes…labels.

Today was the hardest IEP we have had, not because the team, or any changes being proposed, but mostly because of my own realizations. With an undiagnosed- diagnosis, I have been living with the impression that her delays might be short term. I kept holding on to the thought that with a little help, she would catch up to her peers and she would gain speech in time. I have never actually said this out-loud to anyone, because if you have met Layla its pretty clear that her delay is more severe than “needing a little catching up” but, hey its the Mom in me.

Well, today was a punch in the gut for me.

“Layla scored on the Full Scale IQ at 57”, said the school Psychologist. As we read through all the comparisons against “average peers”, for most scores she was at a “significantly below average range”.  At first this was really hard to hear because I see this little girl everyday, and she works harder than anyone I know. She works hard to communicate, she works hard on muscle strength and physical endurance, she works hard to do hours of intense therapy everyday, she works hard to do all the demanding things that are asked of her (that don’t come easy like; simply getting dressed, jumping or walking up stairs)…she works so damn hard.

I know that if Layla were able to be in a school setting she would learn so much from her surroundings, she would learn social skills that she will need later in life. She would be that much closer to living a “normal” life. You see, because of Layla’s undiagnosed diagnosis/immune deficiency Layla is home schooled. All her therapist come to our home for sessions and for the most part we keep her out of high risk situations because in the past, when she got a bacterial infection it was life threatening. So basically, Layla’s home all day everyday…imagine that? I can’t. Most of us would go stir crazy. Yes, as parents we get out on the weekends and try our very best to let her experience life in other ways. But Layla is going to be 6 years old next month and it breaks my heart knowing she is missing out on a huge part of life that every child has in some aspect….socialization with friends and learning from other kids. I recognize that Home school is common and it works for other families, but most home school kids also have other activities that give them opportunities to be with peers…Layla doesn’t have those opportunities.

So what does this have to do with an IEP…well here it is, I am wavering on my decision to keep her out of school. For the first time I have thoughts to start slow and introduce her to a school setting, maybe just in the spring months (April- June). Just saying this out-loud brings so much fear pouring over me. My heart is pounding thinking about what could happen. All the fears about handing her over for hours to an unpredictable environment where she will be vulnerable. I instantly thought about one of the few times I have taken her to pick up Presley from school and I could hear a child say “Why does your sister look like a zombie?” (that day she had red eyes from inflammation). If we made this decision:

What would happen to her?

How would she be treated?

What would other kids say about her?

Without the ability to talk, she wouldn’t be able to stick up for herself. Who would explain to them what she had been through?

More importantly, what if her feelings were hurt, she wouldn’t even be able to communicate it to anyone…

I wouldn’t be able to protect her, I have to protect her.

At the same time that I am saying all of this I am so honored to be Layla’s mom. Sitting in that meeting and listening to the team talk about her and all the progress she has made, made me want to jump out of my seat and scream…”THAT’S MY GIRL!!!!!!!!!!!”

I know this is a decision we will have to make soon, but for now I’m going to hold my sweet girl and tell her how proud I am of all the progress she has made.

~Life With Layla Rae