I recently met a mother whose daughter is a teenager with Down syndrome. Their family recently moved and now are in a different school district. I asked her how her daughter was doing and if the schools were good for her. She responded, “Good? Well, I’m not sure what that is anymore.”
We went on to talk about what “good” means for our kids and their progress over time. Our kids are doing good for themselves, but that looks far different from what we believed they would be doing at this time in their lives.
Like most mothers, when our babies were born, we had big, wide-open dreams for children. When you discover your child has special needs, your dreams for them turn into a warrior call. They are almost demands, understandably so. Doors are shut from the get-go. Before your baby is even hours old, you are given a laundry list of all the things your child will not do. Well-meaning friends say words of sympathy when congratulations for the birth of your beautiful baby would be much better suited. And the not so well-meaning say even worse. So it’s not hard to understand how our dreams for our children become a warrior call. “My child will go to a typical school!” “My child will drive!” “My child will go to college!” “My child will live independently!”
As this fellow mother and I talked, she said it is now evident that her teenage daughter will not be able to drive, live independently, or receive a high school diploma. I shared that Wil will not be receving a high school diploma, and likely won’t drive. Though I believe he will take adapted college courses and live somewhat independently. We will see as we progress over time.
We talked about what a shock this current reality would be to our earlier selves; if back when our children were babies we could look in a crystal ball and see this future. And we both sent our thanks to the heavens there is no crystal ball. Ironically, the crystal ball is exactly what would zap the magic right out of this journey we are on.
If you asked me right now how Wil is doing, I would answer that he is doing good and I would mean it. He is not doing perfect. Who is? In fact, I just received a call from school today that he was sitting in the resource room refusing to move or work. But when the teacher called me and put me on the speaker phone, I talked to Wil and we all were able to reason with him to get him off the floor. It doesn’t always work, so when he decided to cooperate, the inner warrior call inside me called out, “And my son did get up off the floor when we were all able to reason with him!” And in the background I can hear my fellow special needs moms from all around out there cheering in success with me.
Sometimes these things work, and sometimes they don’t. There are goals and there are plans, but a lot of it changes. One day Wil fully cooperates, and another day some secret switch is flipped and I’m getting a call from the school. This journey is definitely a day-to-day process. This culture was not made for Wil, but thank goodness. It forces us all to step back and re-think the way we do things. We can’t go through life “busy-ness as usual” and wonder where the days went. Every day is new and different. It truly is an adventure.
Clearly, this process carries with it a large learning curve. But in a way, I’ve found that to be the fun part. It’s not easy, and some days I turn my eyes to the sky and pray for an answer because I just don’t have one. There are always going to be goals we set for Wil that he will not accomplish. Where we need to make another turn, make an adjustment, give something else a try. I never want to completely close a door on him. When we walk through those doors we may learn this route is not going to work for him, but we always discover something.
Wil may be reading far behind his peers, but here is the adventurous, magical part. Recently, as we have walked through the grocery store, he started reading all the signs hanging up and various labels. “Mom, look ‘Dairy!'” “Mom, look, Peeeaanut Butter! That says peanut butter!” “P iiiii ccckles. Pickles! Mom, look, Pickles!” He’s also learned my cell phone number in his speech therapy class, so when I start to recite my cell phone number to the cashier, Wil always recites the last four digits for me. I look at the cashier like my son has just won the Pulitzer and the cashier beams just as brightly as I do. And just like that, we passed on our happiness and maybe a slice of Down syndrome awareness on to someone else. I would definitely classify that as surpassing the “good” level.
Time has definitley changed what I perceive as “good.” That does not mean I believe any less in my earlier warrior calls that did not come to fruition for Wil. All doors need to remain wide open. They have to be given a try. We learn something with each and every experience. To fail is to close doors on ourselves. No one can tell us what our child can and can not do. Not even our own selves. Our children will show us in time given the opportunities. And that’s the key…give it time.
When our children with special needs are babies, there are so many uncertainties and unpredictabilities. Leaving anything to time is extremely unsettling. I get that. I lived that and still do. So continue to belt out those warrior calls for all to hear, bring in all the support possible. Let those well-meaning friends know that while you appreciate their sentiment, no sympathies are needed but you welcome their congratulations. Because it’s all “good.”
Your future may now look different, yes. And believe me, it will look a lot different than you could have even imagined. I know this and my little man is only 11-years-old. But I don’t let that scare me. I let it thrill me.
I never knew before how joyous I would feel over hearing the word “Pickles” sounded out from my 11-year-old son. I couldn’t have known that until I lived it day-by-day. To experience all the ups and downs, and realize it all adds up to good. The only advice I can give my previous self is to let the day-by-day happen. Quit wishing for a known future. Prepare for one, but don’t wish for one.
So what is “good?” I would say today (and I know by now that my definition could change over time), that good is a process. Good is walking through doors and giving it a try. Good is knowing that some doors will close, and that’s ok. Be careful never to close a door on yourself. There is always a way, it just may be a different way than you anticipated. Be open to options, be creative. Allow this journey to be an adventure and leave room for magic. And fun! Good is discovering a new door you didn’t even know was there. When it comes down to it, it’s ALL GOOD.
Stories of Wil, my son, who has Down syndrome 