Supporting families with special needs
I love watching movies.
Though preferential to dramas and comedies, I’m intrigued by almost every genre, with the exception of horror films.A good plot will quickly pull me into the middle of the story. After a long week of work or hours in a hospital, it’s often an escape, a chance to unplug from the pressures of reality.
Admittedly, many of the movies we watch are predictable.Rarely are we shocked by what we see on the big screen.In fact, we’re often able to see the end at the beginning. But every now and again, we’re caught by surprise, like the sight of a bolt of lightening out of a clear blue sky. To me, those moments are great fun.
I love it when I say, “Wow, I never saw that coming!”
But while I like that trait in a movie, I am not a big fan of surprises in real life.
When it comes to our children, I wish I had the ability to see what was going to happen in the future. For example, recently we’ve been working on teaching our son how to drive a car.I wish I could look into the future, and see if we we’re successful and find out if he’s indeed able to drive.
Life seems funny that way. We work with our children on so many things never knowing what effect it will have on their overall health and wellness.
And we almost seem frantic on some occasions to get as much as we can in each week.I know we want to do all we can for our children but wouldn’t it be easier if we knew what would make the biggest difference for our children and just do those things.
Is that what drives us to fill our days with activities? Or do we live with some fear of our child ending up in therapy as an adult cursing us for not providing that one thing that would have made them whole?
When my oldest was two years old he was enrolled in an early start program for kids with special needs. I remember the first time I saw them loading him on the bus. He was in his wheelchair being raised up to the door of the bus for his ride to the school. I remember my heart sinking, the thought of my two year old on a school bus made me worried and anxious. If I didn't cry I know I was close, it was one of those moments where I worried about my child, his life and future. I worried about him going to school and the other adults in his life. Did they care for our son like we did? All of these events were overwhelming, there was something new every week, working to get a diagnosis, surgeries, and therapies. It was all just mind-blowing to me. Thank goodness for my wife or I think my head would have exploded at some point.
Our life today is far removed from when we first got the diagnosis of Cerebral Palsy. The first few years of his life were harder than they are now, we understand the diagnosis and what that means for his life and ours and we have hit a stride of sorts.
Life has not been all smooth or rough for that matter; it has been up and down sometimes in the same moment. The joys like when I saw him stand on his own for the first time, or the hard times of being in a hospital watching them wheel him off for surgery. I know the operation was for his good but it doesn't make the fear any less. He would not have reached that joyful moment without the other, but it didn't make that hard moment any easier.
Last month my family and I were invited to a family birthday party for my one-year-old niece. I was really amazed at the amount of work her mom and dad put into this party. Everything was part of the theme including the cupcakes, which her mom had decorated by hand. They did an amazing job of organizing it and I started to think about my kids and their birthday parties. Sorry to say but I don’t think we ever out that much work into our children’s parties. I sometimes do the same thing about therapy and all the possible treatments we have or have not done for our son. Over the years I have met parents who to me seem to have limitless energy and sometimes pocket books to enroll their children in every program there is.
There is a scene in an older comedy movie “Raising Arizona”. In it a childless couple steal one of a sextuplet children to bring up as their own. On the first day they have the child they sit down to lunch with a couple who have five children and the well seasoned mother starts telling them all the things they need to do like shots and setting up a college fund. The new father who is played by Nicolas Cage looks as if his head is going to explode with all the new information. This is how I have felt when talking to these super parents, I feel like hyperventilating, thinking about all the things I have not done.
I spend way too much time on the past and what I could have done better. I spend time comparing my family to others and it isn’t fair to that family or to my family. Just like our children, whether differently abled or not, each family is different. Looking at what they are doing from my external view could never be accurate. We have had seasons of great activity and seasons of rest, times in which we were all together and getting along and times when we had to seat the kids in certain order in the car just to keep the peace.
I love the movie Forrest Gump. It has some parts I believe they could have left out, but for the most part I really enjoy it. Of course, the movie is a fun way of retelling modern history. They did an amazing job of integrating sixty years of America’s past into a two-hour film. Not only do they weave historical fact seamlessly into the story, but I think you get a sense of what people on all sides of the events were feeling about what was happening.
The other reason I love this movie is the character of Forrest himself. The actor Tom Hanks does an amazing job playing a simple man; not the smartest, not the most handsome, not the strongest guy though he can run, not born to wealth or even to a perfect family. There is nothing you can point to and say, “That it is why his life went the way it did.” Most of the time, he is rather confused by everything going on around him. His mother explains this fairly well when she says, “Life is like a box of chocolates, you never know what you’re gonna get.” Yet despite all of his personal confusion, life just seems to work out for him. I’m not saying everything goes his way, but on the whole things work themselves out.
Isn’t that how we think life ought to go? Most of the time I must admit I am confused. I try to have a plan; every once in a while I’m able to follow it. I think I’m headed the right way, but many times I just don’t get what is going on. I get upset when everything doesn’t work itself out.
I know the Bible tells me that God works all things together for my good, but it doesn’t always feel that way. Sometimes it feels as if every effort I put forward gets slapped down. Perhaps I expect too much when I ask everything to go my way. Perhaps I need to approach these moments with a different perspective.
During my conversation with Melanie Boudreau for this month’s podcast, she said something that has stuck in my head for a few weeks now. She talked about being at church with her daughter, who has issues with noise, and seeing the looks from others when they noticed her wearing noise cancelling headphones. As a parent you know the look, even if your child doesn’t have a special need. If our children act up or are not doing something deemed appropriate by others, they give us the look of disapproval. They of course would never let their child act like that, or perhaps if you were just a better parent your child would not act like that. A lot of things go through my head when I get that look, anger, shame, and judgment. I don’t like the feeling of others judging me in a situation they have no idea about, and I think to myself how they have no right to give me that look.
While I can be, in that moment self righteous, I have to sometimes step back and realize I have been at times on the other side. Maybe I didn’t give the look, but I have judged other parents for their handling of a situation or behavior, that I may have thought they should be better at dealing with. There might have been a million reasons why the parent was not having success in that moment, including as many call them, a hidden disability, which might have made what I deem acceptable, not possible. There have also been times when my children decided to test me, which meant proving to them that even having a tantrum was not going to let them get what they wanted, even if that tantrum was happening in the middle of Toys r Us.
