Monday, April 18, 2011


Queen Teen's IEP was last week, and it was a big one. It was her tri-annual IEP, which is always extra complicated, and because she will be 16 in May (!), a transition plan was added into the mix. There were extra people and extra forms and a brand new section of IEP paperwork to fill out. The meeting took over two hours simply because there was so much to discuss and plan for. I thought I was ready. My husband and I had been talking for a month about what we thought Queen Teen will need to live as independently as possible. I had also met with Queen Teen's Regional Center worker and the Regional Center transition coordinator  to discuss  my concerns and questions about her future. I'd done my homework on what should be included in the transition section of an IEP and I even made gluten free chocolate brownies for the meeting. Yep, I thought I was ready.

I was so wrong.  

The meeting itself was fine. Everyone, from her teachers and aids to her therapists, are working incredibly hard for Queen Teen. Their energy and creativity are limitless, which is good, because Queen Teen is a hard kid to work with. Deaf-blindness and a severe mobility impairment make everything a challenge; just finding out what she wants for lunch can take ten minutes. She is smart and funny and eager to learn, which I think is what fires people up so much to help. Nobody wants to slack on this kid when she's trying so hard. 

So the educational part of the IEP was fine. The team works well together and her goals are strong. The reports from the PT and OT looked good and I even agreed to allow the PT to cut back on direct service because it was becoming disruptive to Queen Teen, although that idea took me a few days to think about. 

What got me was the planning for the future. 

I have dreams for Queen Teen: all parents do. We want our children to be happy and productive and maybe find someone to love. I envision Queen Teen living on her own in a house with roommates, supported by a live-in aid and a nurse. She will work at the local hospital in the NICU, rocking newborn babies whose mothers are unable to be at the hospital regularly. Or maybe she'll work in a day care center with toddlers. Queen Teen is crazy about babies, so I know she'll want to work with little kids someday. 

My husband and I also talk about what we'll do when she's grown up and it's just the two of us. What will we do with the house? Will we stay, or move? Will she want to stay in the house? I'm convinced Queen Teen will live outside our home because she is far too independent and stubborn to want to live with me forever. She's going to want to make her own way in the world, with Rick and I still there to support her and help her when she needs it.

But now, it's really starting to happen. Real, concrete plans are being made. Ideas for what types of work she may do are being discussed. Her educational goals are being geared toward what skills she will need to thrive and survive as an adult. She will turn 16 next month and in two years she will be 18 and able to make her own choices about her life. Will she decide to stay in High School, or move on to a Vocational Program? Will she want to move closer to her father in the Bay Area? Will she insist on living with me until she's 30? Will she be able to live on her own?

I had to fight back tears several times during the meeting, not entirely sure why I wanted to cry. Planning for Queen Teen's future is exciting. I want her to have her own life. But why did that idea make me want to grab my daughter who was sitting beside me during the meeting, and hold her tight. I had asked her if she wanted to stay for the meeting and surprisingly she said yes. She got bored pretty quickly, but didn't want Rick to come and pick her up. She chose to stay. She ate brownies, chatted with one of her teachers, and looked at books. Which right there is a huge step for her. She hates it when people talk about her and usually runs as far and as fast as possible from any kind of IEP.  We'd all talked to her ahead of time about what she'd like to do when she grew up ("Be a Princess.") and if she had anything she'd like to tell the team ("Not really.").  During the meeting itself she didn't contribute, but she stayed in her seat and didn't announce ever four minutes how bored she was. We were all very proud of her. This could be the first step toward her being more involved in planning her future.

As I write this, she is sitting on her bedroom floor talking to her imaginary friend "Sara" while looking at Sponge Bob books. Sometimes she is such a child, while at other times she's almost an adult. She pulls me tight, needing my constant reassurance and security, and then pushes me away, yelling at me for some silly thing like her hair slipping out of her hair band and why hadn't I put it in better. She is so beautiful I am stunned sometimes. How can this fragile creature be so strong?

She'll likely still be living with me for at least another five years; she has a long way to go before she'll be ready to be more independent. So we both have time to get used to the reality that she is growing up and will soon be an adult. Funny, we watch our kids growing up every day, celebrating the milestones, but when it comes time to start letting go, it feels as if we're being asked to peel the skin from our own arms. My baby! Don't go. Stay with me and be little and sweet. Bake cookies and draw pictures and go for long walks with me. Giggle over something the dog does, laugh at Sponge Bob with me, dream of princesses. But don't let go of me.

Not until I'm ready to let go of you.


Confessions of a Closet Hoarder but you can call me Judy said...

I teared up and felt that familiar lump in my throat as I read this. It's all too familiar.


leah said...

This one needed a Kleenex warning. I am in complete denial that the boys will leave me one day (though I know it is coming, it is far enough away that I can pretend it doesn't exist).

Sending virtual hugs your way. I can't believe she is already sixteen!

Anonymous said...

Launching our children has certainly been harder than I expected. I thought I was prepared and I was so wrong. We do the best we can, eh?

Sending sympathetic support.


Floortime Lite Mama said...

I teared up
what a beautiful post

Rose-Marie said...

Wow, this sure hits home! We are just one year behind you...and I am so not ready. My mom always warned me my kids would grow too fast. Why does she have to always be right??

That pull between childhood and adult is really tough, isn't it? The way you ended your post with the image of your sometimes-so-adult, sometimes-SpongeBob-lovin'-kid resonates loudly. Sniff!