We had an ISP for Niko today. An ISP is an Individualized Support Plan or Individualized Services Plan. In short, we’re opening a case file for Niko so we can have support when he transitions out of high school. We want him to be able to contribute to society and engage with those around him, but we need help facilitating that. This way we’ll be connected with different programs that can help oversee him getting some kind of employment where he not only contributes, but hopefully gets to do something he enjoys. Because of his level of cognitive function, he’ll also need quite a bit of help.
I have to be honest: sometimes these meetings can be horrifically hard on my heart. I love Niko. I adore my son. He is remarkable and continues to surprise us. The doctor originally didn’t think he’d live. They didn’t think he’d be able to speak. And now he’s 16 years old and loves to talk about washers, dryers, and family vacations.
But these meetings are difficult because we’re forced to sit down and take a hard, realistic look at his strengths and weaknesses. I have to stare at mountains of paperwork that list all of the things he has difficulty with. Eating with silverware. Tolerating the sounds of any closing doors. Do you know how many doors, cupboards, cabinets, vehicle doors, microwaves, washers and dryers, fridges, etc. there are in the world? SO MANY. Take one day of your life and think about how it would be if you had to plug your ears and hum in order to block out the sound of any shutting door. Is it exhausting? Does it make you nervous? There is no respite, is there? That’s only one of many things that Niko deals with.
It was painful because the people in charge didn’t know Niko at all and seemed to vastly overestimate his functionality. “If he wants to live independently, etc.” So I was in that awkward place where I don’t want to limit him, but I also don’t see that possibility in his future, and I didn’t know exactly what to convey. I told them that he’s making tremendous strides and I’m so very proud of him, but that this meeting pulled the rug out from under me emotionally because I had to see, in stark black and white, how he differs from typical children. I told them that mostly we do really well, but every now and then something like this crashes over us like a wave and I feel like I need to mourn the loss of the expectations and hopes that we originally had for our child. They were great about it and said that it was good for them to hear, because they usually just think, “Paperwork, paperwork” and sometimes forget how emotional it can be for a parent. I have to look at the fact that he will always struggle and have fears. He will most likely never move from our home. He’ll probably never fall in love, never start a family of his own, and never experience the things that I wanted for him.
That’s the key phrase: the things I wanted for him. These aren’t necessary the things he wants for himself. He is a happy boy who knows he is loved deeply. With hard work and care, the rest of his life will fall into place. I will make it fall into place.
My wonderful friend Tricia Florio Windle, who also has a son with Williams Syndrome, said it beautifully. “This is the hard part that many don’t think about. Parents of special needs kids must open up their lives in a way other parents don’t necessarily have to. Reality doesn’t care that not all of us are comfortable with that…that for many, it’s a true struggle. If we want help for our kids, we often have to force ourselves to be vulnerable, give up our privacy, talk about things that make us sad and angry, face groups of people even if we are introverts and find the experience exhausting. It’s not fair, is it?”
Usually we are very happy. Niko brings a joy into our lives that I cannot explain. But sometimes reality hits hard, and there is a very real mourning process. After the meeting today, I was emotionally exhausted. I went home, put all of my work on hold, and slept for two hours. I was done. There was nothing left inside of my soul.
Then I woke up, washed my face, and smiled when Niko’s bus brought him home. I greeted him and his sisters with hugs. We talked about their day. We made plans for the evening. I’m tired and stressed but also grateful. Life goes on. It always does.
To learn more about Williams Syndrome, please visit Williams-Syndrome.org.