The Foorce

In the past when I expressed worry over something about James, I often heard as a reply that every parent worries about their kids, special needs or not. “You won’t have to worry about James breaking curfew, doing drugs, or driving a car,” I’ve had said to me. “Every parent has worries, regardless of if their child has special needs.”  And there is a lot of truth behind those statements.

But I could never shake the feeling that somehow the car and curfew and even getting-into-trouble worries would be worth not having to worry about James’s surgeries, safety from predators, growing old alone, his lifespan and long-term care needs. Now as a parent of two more very typical children, I am even more certain that the emotions involved are indeed different. Special needs or not I love all of my children immeasurably, but the feelings of joy, sorrow, pride, fear… these are all experienced in very different ways regarding James or my younger two.

Top Ten: Emotions Experienced As A Parent Of A Special Needs Child

1. Pride – Think about the pride you felt at your children’s first steps, first words, at the A on their spelling test. I felt that same pride when James walked at 2 1/2 years old, spoke his first word after 4 years (and 4,000 hours of ABA therapy), and got a 3 out of 20 on his math test (up from a whoooolllle slew of zeroes). Yep, that very same pride – times a jillion. And to make it even more complicated that pride was mixed with other emotions like relief, surprise, joy and a little bit of sorrow.

2. Frustration – Ever feel a flash of annoyance when you have to repeat yourself to someone for the third time? How about the eighth time? Or the twelfth time with your hand on their shoulder? How about repeating everything (truly, everything) you say all day to one person anywhere from twice to more than ten times, and having even your raised, angry (semi-hysterical) voice ignored as if you don’t exist? And how about knowing that your annoyance is misplaced because the person “ignoring” you truly can’t help it (most of the time, anyway)?

And how about waiting on hold to make a doctor’s appointment or discuss that medical bill that seemed a teensy bit high – we’ve all felt that frustration, right? How about doing that for 8 different doctors (for just James) and having to hang up every time your wait time gets too long because there are 3 kids at home dancing in circles around you?

3. Envy – I no longer care how it sounds. It doesn’t make me love James any less to admit that I sometimes envy other parents when I watch them scheduling playdates and sleepovers for their kids, dropping their kids off at an activity (as awesome as they are we have to stay in the vicinity for most of James’s activities, ), or helping their child carry a huge science project into school. I also envy the kids who are riding the subway or walking to school alone, who are riding their bikes or going to movies with groups of friends, who effortlessly scale the monkey bars or join in a game of kickball, who can walk through Central Park carrying a balloon.

4. Sadness/grief – There are obviously more sad memories in the span of James’s life than I care to recount, and if you have a loved one with special needs I am sure you have a few doozies tucked away yourself. It’s one of the invisible bonds between special needs parents – the knowledge that we have all experienced deeply sad things and understand that when it comes to a disabled child the stages of grief are cyclical. For me, no matter how wholly I’ve accepted James’s disability, every stage of his life brings along as many new sorrows as it does joys.

One of my saddest moments regarding James recently was watching him through the fence at school at the end of the day. The fifth graders were outside for a bit of extra recess and I spotted James across the courtyard, valiantly following a group of boys from about 10 feet behind. Once in a while the boys suddenly swerved or started to run away from him and every time James would do his best to keep up, even though it was obvious that the boys were not interested in having him as a shadow. James trailed them this way for the last 10 minutes of the school day, smiling, trying to talk to them, blissfully unaware that he was unwanted, and equally unaware that his mother was watching him, silently loathing those boys while deeply grieving for her own.

5. Gratitude – One of the most common things I’ve said over the last decade is, “it could always be worse.” And though cliche, it’s absolutely true – despite our struggles, the bottom line is that every family has problems and many are not as fortunate as we are. I’m grateful for the patience, generosity and empathy I’ve learned from having James. I’m grateful to other people who will never even know how thankful I am for their kind and giving spirits toward James. And yes, I’m grateful that it’s not worse.

6. Guilt – First there’s the guilt that comes along with feeling the aforementioned frustration and envy. Then there’s the guilt I feel for letting James play on his ipod because it”s easier than trying to force him to play a game with me, the guilt of giving him meds I’m not 100% sure are working, and the guilt from lying to him about why we can’t have his “friends” over to play every week – you know, those “friends” he was following around at recess.

7. Worry – I mentioned that someone said that at least I wouldn’t have to worry about James driving a car. Driving a car? How about getting hit by a car? Worried about making friends at school? How about not getting picked on horribly at school? Finding someone, getting married? How about worrying that if he gets married he might have children, and who will be taking care of them? Worried that your child won’t make enough money? How about worrying that when he gives someone $20 for a banana he won’t expect change back? Worried your child might end up doing drugs? How about the side effects of the drugs he’s on already?

8. Inspiration: Nothing comes easy for James. Not grades, sports, friends. Then there’s the surgeries, pills, doctors, therapists, and let’s not forget the amazing list of phobias. But James is still made sincerely happy by the small things in life. Somehow, James has learned the most important lesson of “look for the silver lining.” I can have another chicken nugget? Thanks, mom! I love you. or We can read one more chapter? Tonight? Awesome! And did you catch how much he loves mustard (see last week’s Monday Minute for a recap)? Watching James get through the day and still smile so easily is a true inspiration to me.

9. Anxiety – is different than worry. Anxiety is what makes my stomach tighten every time I walk by a balloon, even when James isn’t with me. Anxiety is what prompts me to check and recheck every aspect of our family vacation to make sure it is 100% special needs friendly. Anxiety is what keeps me up the entire night before James starts a new school year, typing out all of the “must know”information for the new teacher. Anxiety is the best word to describe how I feel, listening to James thrash and scream hysterically for “help, Mom” from the other room while he is having his teeth checked, his blood pressure taken, or God forbid getting a shot.

10. Hope – More than one therapist told us (and was promptly let go right afterward) that James would never talk. James’s kindergarten and first grade teacher told us flat out that even though James was starting to recognize sight words, he would never learn to read phonetically and would have very limited reading skills at best, so not to get too excited (we couldn’t fire her). We sat in an IEP meeting full of educators who informed us that James would be “eaten alive” in a NYC public school. As you can see from the Monday Minutes, James is speaking juuussssst fine. He reads at grade level and is completing his fourth year in the NYC public school system, with only a couple of bites missing. So when someone asks me if James will be unemployed and living at home with me when he’s 40 (much more tactfully, of course) I can honestly say, I hope not!