Going Mainstream : Transitioning to Mainstream Classrooms From Special Needs

The girls IEPs (Individual Educational Plans) for the next school year are tomorrow morning. My stomach is already in knots. IEP meetings can be an amazing time to hash out what works for your kid and how you can get them the help they need. Or they can be battleground with shouting and crying.

For once, I am going into an IEP totally prepared and knowledgeable about what is going to happen. And (mostly) okay with it. But still the hollow feeling in my stomach is there. Too many IEPs and decisions weigh on my mind. And then there's my nervousness at taking this step.

The plan is to transition both the of the girls to mainstream classrooms. Calamity Jane will take a community spot at one of the local college's preschools. She will go all day (from 8:30 to 3:30) which will be good for her and for our family dynamic. She needs somewhere to channel her energy and intensity and the regularity of the schedule should help regulate her moods. This has been the plan for a while and I feel very confident about it.

But I am not so sure about Desmonda Drama. She's supposed to transition into Title 1 but we're not guaranteed a place in it. We do have a co-op spot for her three mornings a week but without that one on one attention every day I am worried she will sink instead of swim. I know she needs the social push but she also needs the therapy.

At the heart of it is the fear of seeing my girls leave the protected nest of the special needs world. There they are superstars, social butterflies, and the successes of their teachers. I love that they have their moments in the spotlight, on the A list, of being large and in charge.

My challenge for next year is how to preserve that feeling for them. How do I find the places that they can shine if it doesn't happen for them in the classroom?

I Don't Feel Lucky

Here is one of those posts that I cry as I write because I really do feel like the worst mother in the world. I feel like I should bookend every line with "of course I love them immensely". But this blog is not about the reassurances, it's about being honest (to a fault sometimes).

Here is the thing, when it comes to my kids having special needs: I don't feel lucky. I haven't had that great life lesson. I don't wish they were exactly the same. I accept them and love them the way they are. But oh how I wish I could take this burden from them.

And yes, I realize it could be much worse. And that they have gotten much better. Those facts though are of little comfort when they are both screaming in the car for an hour straight; when they are throwing fits in public and everyone is staring; when my daughter struggles to play with toys.

I've written before how we are just outside of normal. And I think that is what makes watching the girls grow up all the more bittersweet for me. I see how close they are to not having to struggle and see how close I am to not having had this stress of keeping all the balls in the air. Maybe it's a convenient excuse, but I can't help but wonder how different of a mom I would be if we didn't have these challenges.

Our burden, compared to so many, is small. And I can see the light at the end of the tunnel of these things being gone from our lives. But still, I don't feel lucky. I don't feel lucky at all.

When to push

A image has been in my head a lot lately. It's a snapshot from the first few months of the girls' lives. I couldn't get either of them settled and I hadn't slept more than three hours in a row in weeks. My nerves were so raw that I was ready to walk out the door and not look back. I ended up pouring myself a Guinness, grabbing a bar of chocolate, and settling them each on a breast. I sat there tandem feeding them for almost two hours, silently crying most of the time as drank my beer and ate my chocolate.

I remember thinking: this has got to get better.

And of course it has. I regularly sleep seven to eight hours, the girls play for long stretches together, and they are old enough to go to school. I can do things like blog and clip my toenails and shower everyday. But the raw nerves, they're still there.

This week we've been home potty training and by today I could have powered a city block off of my nervous energy. Little did I know that those hard moments when they were babies were going to be the easy ones. I could still meet their needs, do everything for them, shape their world for them. I could imagine their emotions and make them happy with the simplest things.

Now we struggle with each other and I watch the emotions storm across their faces. I know their limitations and I see them fight against them. My heart breaks for Desmonda. I watched the pee puddle around her feet today and her look of surprise. I struggle to control myself when she poops the minute after I let her off the potty. I hold her and reassure her that she will get it, reassure myself that she will.

I never know when to push, when to make allowances. I expect too much but worry about expecting too little.

And in this, I don't know where to turn. I don't have friends close enough here that I can cry over it to. And I haven't kept up the friendships I've made in past cities with all the stress here. I feel out of place in special needs forums because the girls are so close to "normal" that I feel like a fraud. But the standard advice just doesn't work.

So I close the bathroom door and cry out of sight of the girls. I call my husband and my sister in law and ask them to tell me I am doing the right thing. I drink a glass of wine at four and remember that this too will pass. And I hug my daughter and tell her I love her and how proud I am of her.

Mark Us With A Scarlet S

I've mentioned before the girls have special needs. You wouldn't know it to look at them, except possibly thinking they are younger than they are. I don't even think about it most of the time but it's there lurking at the edge of our lives. One little thing can upset the applecart.

Like this morning when we got in the car to head out for our weekly Farmer's Market trip. The CD player wouldn't play and Calamity Jane couldn't understand why (neither could I for that matter, 6mo old Mazda 5.) By the time we got to the market, every one of her nerves was tingling and it took several negotiations to get her to leave the car.

Everything was going smoothly until something set her off while I was waiting to buy eggs. When I keeled down to help her and readjust her bags, a woman stopped to glare at us. My husband asked her what was wrong and she told him "You should take her out of here. Children should not be allowed to behave that way!"

I felt the tears begin to burn at the back of my eyes, the tears every parent of a special needs child has had. The tears that start off as embarrassment and then become angry tears. Anger at yourself for being embarrassed by your child and anger at the person who feels the need to judge you.

What I want to say to this woman and any one else who stares is: what would you have me do? Should we leave every place every time one of my children acts out? Because that pretty much means staying home all the time with them. And who would that benefit?

It certainly wouldn't benefit my daughter who has to learn to control her emotions and adjust to change. It doesn't benefit her twin who had been looking forward to the trip all week. Nor does it benefit me or my husband who have to eat. It definitely doesn't benefit the local farmers who we make an effort to support by shopping at the market.

Yes, a few shoppers wouldn't get bumped into by my kids, they wouldn't be bothered by their occasional outbursts, And yes you, the woman who told us off, your day not have been bothered by the sight of my child. Next time I will remember that your needs outweigh my own.

My husband told me not to let this incident get to me. Obviously I wasn't able to follow his advice. But as I stewed over it while grocery shopping I remembered last week's grocery shop.

We had pushed it too far, trying two big activities in one day and by the time my husband and I met at the checkout both girls were freaking out so I took them outside while my husband paid. As I pulled them, screaming, past staring shoppers a woman told me "I've so been there sister, hang in there!"

I never confronted the woman who was rude this morning but I did take time to thank that woman at the grocery store. And in addition to her I thank every parent, every random stranger who has stopped to help, sent me a sympathetic look, or just smiled at me instead of glaring. You don't know how much I, and every other parent in my situation, appreciates it.

Being Special

After a few weeks of cyclical sickness (two kids to pass between plus two parents mean flu and colds last forever) I am finally having a normal morning where I sit down and drink my tea while the girls watch their shows. So it is time to post.

There have been a lot of posts circulating in my head these past few weeks. A funny one about the Alpha Mom brigade, one admitting to my own Alpha Mom tendencies when it comes to birthday parties, Posts sparked by a great wine night out with a new friend where we talked about work and what we would do differently next time is there ever was a next time (we both fear having twins again).

But I haven't been able to write those because there was this post waiting. It needed to be written but I could not bring myself to sit down, write it out, and hit submit. This is a blog about the dark side of parenting but I could not get honest and write about this.

I am the mother of special needs kids.

And I hate myself for even having trouble writing those words. I have referenced it before in this blog. Friends in "real life" know the girls have delays. But there is just something about writing the words down that make it seem very real. I am ashamed of myself for having to "come out" on this issue. I have always thought of myself as the open sort who doesn't care about differences. It turns out I just care when it is my own kids.

The thing is I don't want people to think differently of or prejudge the girls. I want them to be seen the way I see them. Would I love it if they were both intelligible? Yes. Hell I would settle for one; then she could translate. But though their quirks make life harder but they also make them, them. The kids I love.

The problem is my own. I can't let go of the image of what my children would be like, what motherhood would be like. I can't seem to accept that we are on a different path than the norm, even if that path is what leads us to "normal". All the research on preschool, all the activities, all the play dates seem worthless. All the worry over social groups and exposure to the arts and other modern parenting problems only kept me from what I should have been worrying about.

Of course I blame myself. When you sit through five hours of listening to every single thing that is wrong with your children, it is hard not to feel like The Worst Mother Ever. But all I can do now is buck up and face the fact that motherhood is loving your kids; not living up to an image. Loving them is easy, letting go of the image is the hard part. Writing this is a first step.

If Only I Could Read Minds

Yesterday I finished up my weekend read Petite Anglaise by the writer of the blog Petit Anglaise (which I was kind of glad I had not read, I might have not been as enthralled by the book). A lot of what she wrote about touched a nerve in me about my own identity crises and relationships worries post kids. But it is the recollections of her daughter that stick with me.

It really touched a chord with me, the frequent references to conversations with her daughter, who in the book is the same age of the girls. The recordings of the utterances that, literally, could only come from the mouth of a child. The funny little back and forth exchanges they had. I envy that so much.

As I look up from writing, I watch my daughter lay out napkins (old cloth wipes that the girls now use for pretend) out in a pattern on the floor, I wish I could see into her head. For me, it is the hardest part of their delays... the loss of their voices.

With Desmonda it is as if I am listening to a language I am only starting to master. Her muttered sentences are full of words that I can't quite understand. Often I get the gist of what she is saying but sometimes one indistinguishable word is enough for me to not be able to translate. I hate telling her hopeful, expectant face "Sorry, honey, I don't know what you want". Communication is so close with her but feels so far away.

With Calamity Jane, I am left to just wonder. Her few words are utilized for only her most basic needs and often only understandable to us. The words all are shouted at us in the same insistent, angry tone. I cried the first time she called out Mommy to me in excitement when I walked in the door. Here was proof I could hold onto that she could communicate, that she wanted to. All along her babbles have been full of expression and variation, rising and falling as she talks in her Janespeak. There is always so much going on in her head but we are not privy to any of it.

Often when I observe their play, I imagine their thoughts for them. Sometimes I unconsciously speak them out loud. Occasionally they will riff on what I am saying, allowing me into their world, but often they just look at me, befuddled. They have no idea what I am talking about. And I have no idea what is going with them.

It feels wrong that I am missing out on their thoughts. This is a unique time when they are completely unselfconscious. Their thoughts are unfettered by the limits of reality and the judgments of others. It is radical honestly in its most pure form.

When they do start communicating it will be precious to me whether it is next week or next year. The words will be no less sweeter and I know I will treasure each one. Until they drive me crazy with too much talking. But I think a small part of me will always mourn all that I have missed.