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.