A little piece of heaven

We hit a major roadblock today. We had Nathan’s assessment at CART for the dynavox. It was horrifying.

The speech therapist spent the entire time introducing Nathan to new concepts and methods that we’ve never used before, then commenting on his inability to perform the requested tasks. We spent several weeks using the Dynavox in a certain way, she then requested him to use the Dynavox in a way that he’s never done before. Then she had the gall to imply that Nathan doesn’t have the cognitive function to use the Dynavox effectively.

It was infuriating.

I don’t want to get into all the details as I have to get up in a few hours for Nathan’s MRI tommorrow morning. But believe me I gave her a piece of my mind. Unfortunately she was just as stubborn as me and we ended up at an impasse. She is going to deal with the Dynavox people to extend the trial period to 3 months. During that period she will give us “homework” that Nathan has to master. When we have the follow-up appointment, he has to demonstrate consistent functional use of the device for her to approve of the recommendation.

It’s just so hard because I know that Nathan needs this type of device if he is going to have any hopes of communicating. I just wish it didn’t have to be so hard.

After writing the previous post “Poor Nathan”, I grabbed Nathan and we laid in the hammock for a little while and said our evening prayers. Then I read him a story and put him to bed. I was still keyed up so I took a nice bath but still my mind couldn’t stop spinning. So here I am.

As I was saying in my previous post, I am the first to understand that Nathan is different. No, he shouldn’t be considered a “poor” child – he is the richest child I know. He is wealthy in love, patience, expression, inner hearmony, inner beauty, resources. But at the same time I do know that Nathan has limitations and that his life will never be “typical”.

So although I announced here that I will not send Nathan to the special needs school, I have to admit I’ve been having doubts. Am I doing the right thing? Perhaps it would be best for him to be in that sort of environment? Perhaps he really does need to learn matching, sequencing, and other such skills that they would teach him at the special needs school?

But I’ve continued to think and I have to ask here…so what if Nathan learns his animals? So what if he learns matching? So what if he learns sequencing? I was reading another child’s IEP who is similar to Nathan and checking out his educational program and IEP goals. They had things in there like – will learn to take turns with other kids. Will recognize the letters of his name. Will be able to match objects with their images. All of these things seem very basic, right? And essential?

But are they really? Really really? I already know Nathan is not meant to be a neuroscientist. I already know Nathan will probably not be a computer engineer, or a bus boy, or a realtor, or a professor. Don’t limit him! you maybe thinking. Perhaps he WILL be one of those things, if given the chance. Perhaps he will be one of those people who write books using augmentative communication devices. And yes, I know it’s a possibility.

But more than all that, I know in my heart of hearts that Nathan is here on a spiritual journey. I believe Nathan’s presence in this earth has a different meaning. I believe he is here to teach others about acceptance. About unconditional love. About beauty and gratitude. About giving.

There are enough computer scientists, lawyers, professors, musicians, realtors, bus boys in this world. But how many truly happy, truly accpeting, truly compassionate, truly empathetic people do you know? Do you know an abundance of people who change people’s lives by their simple existence? Do you know people who, with every breath they take, teach about the power of a loving heart, about courage, about facing and overcoming limitations?

If I could write into his IEP things like: Nathan will experience the beauty of nature 3 times every day. Nathan will feel truly loved and accepted every moment of his day. Nathan will learn to value his differences. Nathan will learn to enjoy the rhythm of his heart. Nathan will delight in hearing beautiful music, smelling beautiful things, touching beautiful textures. Those are the things that matter to me for Nathan’s education. What I want for Nathan, above and beyond anything else, is to have a healthy sense of self. To love himself, to love others. To deepen his patience, gratitude. To be loving and empathetic towards others. Those are the things that he needs to be successful in life. And those are not things that are taught at his special needs schools.

They ARE taught at his Waldorf school. That’s what Waldorf education is all about – feeding kids’ heart and soul. They teach and show by example things like love, support, gratitude.

So yes, Nathan is different. No, he is not to be pitied. No, he does not need to learn the alphabet (just yet), or matching, or sequencing. Of course, as he gets much older, we can offer him these objects of knowledge and maybe he will accept them, maybe he won’t. But for now, while he is 3 years old, I am most interested in feeding his heart and soul.

And it’s not just because of Nathan’s special needs. If I had another, typical child – I would also send him to the Waldorf school.

Okay, maybe now I can go to sleep and stop the wheel turning.

I was talking with someone tonight and she said, “poor Nathan.” I was like, “what do you mean? why?” She said, “I always feel bad when I see kids with special needs.”

And I ask you dear reader… do you see a “poor” child when you see Nathan? What’s “poor” about him? Does he strike you as someone you should feel sorry for? Do you think he should be pitied because he is different? Is he a “poor” boy because he doesn’t function like everybody else?

When I see Nathan I see NOTHING poor about him. I see a child who is HAPPY all the time. I see a child who knows he is the center of his parent’s world. I see a child who plays, laughs, loves, cries. I see a child with distinct likes and dislikes. I see a child who loves playing with other kids and doesn’t like being told what to do. I see a child who has travelled more than many people do in a lifetime and I see a child who enjoys many different kinds of experiences. I see a child who loves brownies (even gluten casein free ones), who loves birthday parties and wants everyone to sing for him. I see a child who expresses his needs…he expresses them in different ways, but expresses them just the same.

So he can’t stand up…so he can’t walk… so he can’t talk… does that mean he is a HUMAN BEING who deserves to be pitied? Because above and beyond he is that – a HUMAN BEING. A person with feelings, a person who feels joy and sadness and has a need for human interaction.

Nathan is a HAPPY child. Just like your child. Just like most children. I am not saying he is happier than other kids. I am just say he is happy, just like any other kid. Yes, he has different abilities. Yes, he has more limitations. I am not blind. But if you look at him from the point of view of what any parent would want for their child – he has that! He is healthy. He is happy.

Please don’t pity my child. Please don’t assume that any child with special needs deserves to be pitied.

Open your eyes. Open your heart. Look at what this child is saying with every breath he takes – it is okay to be different! I don’t function like you, but I am happy! I have limitations, but I am happy!

What else do we ALL want for our kids? For ourselves, for that matter? Isn’t happiness what we’re all seeking? Isn’t that why we work, why we have kids, why we get married, why we eat chocolate and go for a massage? Because we want happiness?

And you think…poor Nathan? Think again.