when unexpected grief hits in special needs parenting {part 2: preschool edition}

The start of special education preschool is looming for Zoe, and I'm feeling an unexpected sadness. Yes, some of it is the same bittersweet brooding that came with sending our oldest four to school for the first time, but that's not all of it. This feeling, my friends, is that special needs parenting grief I wrote about yesterday.

Let me start with a little context...

1. None of our other children have gone to preschool: for Jocelyn, home was the best place for her learning and for me since she was my first and I was soooooooooooo not ready for her to start school. for Patience, she wasn't in our family through the preschool years. for Robbie, his epilepsy wasn't controlled enough for preschool plus we were spending part of fall in Uganda. for Philip, he joined our family no long before he turned 5 and our focus was on family attachment. for Patu, she's 3 now, and Lee and I have always said that if we do preschool, we'd wait until age 4. Meanwhile, Zoe just turned 3. She won't enter kindergarten until the fall of 2017, which means she'll have almost 3 full years of preschool.
2. By federal law, kids with disabilities are guaranteed educational services from birth through age 21 if they have need for that support. Until a child turns 3, those services are usually through an early intervention program in which supports (usually a physical therapist or speech therapist or occupational therapist or feeding therapist or developmental therapist or some combo of those) come to the child's natural environment, which was home for us but can be a daycare center or somewhere else for other kids. At age three, services transition from meeting IFSP (Individual Family Service Plan) goals through early intervention to addressing IEP (Individual Education Plan) goals through the local public school system. Zoe is 3, so that's the transition we're in right now, with a slight delay in her start due to recovery from her surgery. For preschoolers with IEPs as extensive as Zoe's is, placements in our school system are usually in a part-day class for 2.75 hours Monday through Thursday or in a full-day class for 6.5 hours Monday through Friday. Technically, Zoe's IEP is for a part-day class, but the school that's the best environment for her is a full-day program, so she'll start half days Monday through Friday for this year and then probably move to full days or close to it in the fall. 

In other words, preschool hasn't been a given in my book for my other children. Furthermore, when we did consider and tour some preschools for Jocelyn before deciding not to go that route, I felt a sense of agency I don't feel this time around. I could say yes or no. I could pick anything I wanted for her. The options were wide open for which days, which hours, and which environments for her early education.

This time, we know Zoe will benefit from special education preschool, so that's not the struggle for me. Instead, my conflict stems from feeling like my social and opinionated yet immobile and largely nonverbal kid might not be understood by her teachers or classmates. We see a beautiful, spunky, bright girl when we look at Zoe, but most of the world sees a wheelchair for movement and an iPad for communication and assume that she is less than. She is not. 

For early intervention in our home, I could be there to protect her and help everyone see her just like we do. For schooling outside of our home, I can't. That lack of control definitely contributes to my sadness.

(Friends, please stop yourself if you're tempted to comment, "Oh, I felt just like that when my typically developing kid went to school, so this is normal." No. I know what you felt because I felt that too with my other four who are in school. Comments like the example I just gave can be hurtful because (a) those words minimize the extra challenges special needs present and (b) remarks that minimize our realities dismiss us and our emotions. Yes, what I'm feeling is similar to what parents of typical kids feel when their darlings start school, but there's an extra layer... and that layer feels particularly heavy to me right now. No, while there are some similarities, it's not the same.)

I know some of my grief flows from our experience at our first pick school. We went there, we met the director of the center, we met the coordinator of the program, we took a tour, and all was well. They called to schedule a new parent orientation and a new student home visit, and while we postponed putting those on the calender until after her IEP was finalized, everything was perfect and positive and progressing. Until the people at that center who I had talked to in detail about Zoe, who had met her, who knew exactly what her strengths and weaknesses and needs were, changed their minds and, instead of having the decency to communicate their decision to me after all our prior communication, made the director of preschool special ed services do so. Basically, they didn't want to accommodate a child in a wheelchair, and they weren't adult enough to tell me that themselves, instead choosing to hide behind someone else who broke their bad news to me. Because they are a private center that contracts with the district to provide a few spots for kids with IEPs, what they did is completely legal. 

And I was left feeling like they saw my girl as less than. She is not.

Obviously if that's their attitude, then they aren't the right place for us anyway. (And not that I'll ever do it, but I'm cheering myself up a bit with an image of pulling a Pretty Woman "big mistake!" moment of bringing Zoe by someday to show them what they missed out on.) 

This round of grief is a little about the lack of choices we get for preschool for Zoe as compared to what I had for Jocelyn but it's even more about my sadness for a world who views my girl and others with special needs as less than. They are not. 

Sometimes the grief of special needs parents is about what our kids can't do or won't ever do, like I shared yesterday. Other times, like now, we grieve for all the people who miss out on how absolutely amazing our kids are. They are so much more than diagnoses and labels, so much more than medications and equipment, so much more than differences and IEPs. Zoe is clever, and she has a wicked sense of humor, and she loves Barney, and she can belt out parts of Let It Go, and she adores her older siblings... and she also has cerebral palsy. I'm saddened because some people will fixate on the last characteristic in that list and then choose to miss out on all the rest. 

She prays with her sisters after school, and she loves all primates, and she demands to be in the middle of all the activity in our home. Zoe is so much more than cerebral palsy. She is.