Wednesday, October 08, 2008

What I Know For Sure About Having a Special Needs Child

The note from high school was interesting. Dear Son was learning about plants and his teacher had written me a note to tell me how much Dear Son was enjoying learning about them. They had taken a field trip to a garden, where they got to view many plants and herbs and he loved it. She wrote, “Dear Son is so awesome to have in class-the best sense of humor and he is so eager to explore."

It was only a few weeks later, when I spoke to his teacher on the phone for the parent teacher conference, and she indicated that he was enjoying watering the plants. She said it took a lot of effort for him to do this. I wasn’t clear on how they were doing this since Dear Son doesn’t have much functional use of his hands or his arms. She stated that they used a squeeze bottle and he was responsible for attempting to squeeze the bottle to start the watering and to stop the watering. Once I made it clear to them that he was left handed, it went much better. She said they had just assumed he was right handed.

If I were to imagine sixteen years ago, that Dear Son would be such a mature young man with varied interests, I doubt I could fully comprehend what that would mean. At that time, I was worried about all of things he wouldn’t be able to do but secretly hoping he would do all of them. That’s why it was interesting when I received an e-mail from a woman today, whose infant son was just diagnosed with an ARX mutation. She had two other children, prior to this one. She said she would have been fine not knowing.

I wonder what to say when I receive e-mails like this. I want to be sensitive and kind and try to imagine where they are at in the journey. On the other hand, it’s so difficult to write them because my heart is filled with such joy and love for Dear Son, that it’s hard for me to write as if a “special needs” is something less desirable, because I no longer feel that way. I feel that Dear Son is a perfect child.

I no longer see what he isn’t but what he is and has become. I love who he is and who he has become. I have learned so much from him, living my life and seeing the world from his perspective, that I no longer think it’s a bad thing to have a special needs child. In his imperfection, I found perfection. I can no longer think of my child as being anything other than perfect. His physical and mental disabilities, that were once in the forefront, are now in the background. His soul, his personality and his honesty beam so bright that I forget about the other stuff. He lives every day from the heart. He lives in the moment. He is happy and he has friends. Of all of the things that give me pleasure in life, seeing him laugh or seeing him smile is always number one.

Because I love my Dear Son, it doesn’t mean that I don’t wish his life was better or easier. I’d love it if he could walk or tell me when he’s hungry. I’d love to be able to talk to him for a whole day, just twenty four hours would be great. Being able to hear his voice, listening to what he has to say and hearing him tell stories from his point of view would be wonderful. I don’t think other parents can really comprehend what it would be like if their child never spoke to them.

But perfection comes with a cost. I don’t wish for all of the horrible seizures for these little boys. I don’t wish for the hospitalizations, the ER visits, like the one Dear Son had yesterday, or for any of that other stuff. The enormity of caring for a disabled child can be overwhelming, no matter how organized you are. As they grow bigger, it takes more of their energy and more of yours to do the same things you did yesterday.

But if I had to trade all of my yesterdays with Dear Son or all of my tomorrows with him, I’d never do it. Genetics tests are just that, they are information. But what they never reveal is the depth of the joy in caring for a special needs child. I firmly believe that being blessed with a special needs child, is like the universe smiling down on you as a mother. For only those mothers, will be able to see the child for who they are. And that something, is pretty spectacular.

Note: Dear Son is sixteen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes Infantile Spasms, dystonia and severe mental retardation.


Anonymous said...

I think you just wrote your response to that mother... Well said.

Hugs to you and Dear Son!

jeanie said...

Oh my - a post like this is what I needed to see after a friend told us today that the scan they had on the baby wasn't good, and the amnio said a foreign word and evoked scary stuff.

Yes, it will still be scary for them - but it isn't all bogeymen and shadows.

Dreaming again said...

Dear Son is 16? Where has the time gone!! How long have we been blogging together?

beautiful blog post my friend.

Anonymous said...

Of all your posts, this one touched my heart the most.

(((hugs))) to you both.

Thim :)

Anne said...

I love what you wrote, and I agree completely with your sentiment.

Eileen said...

So glad you posted this week - when you don't post for a couple of weeks I wonder about what you are dealing with. It's nice once we know you are both still there.
About this post: When you started your journey with DearSon you didn't know what was in store so you could grow into what happened over time. The woman who wrote to you has obviously been searching for info on the Internet and has found and read your blog. Now she is faced very suddenly with what is down the road in years to come. It's a bit like the man or woman who marries someone with teenagers - they aren't half so scary when life with them was preceded by the learning curve of your own small people. They're really just big toddlers in so many ways. She hasn't learnt to swim in the shallow end before venturing into the deep stuff - so she's scared to death.
I think big hugs all round are called for - we should all be thinking about her as she sets off on her journey of discovery. Maybe in 15 years time she'll be writing a blog about her child.

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