This update has been a long time coming. Sorry about that :D I remember when I was at Concord, some dear friends who had young children were lamenting that they never remembered to take pictures or videos of their children, and then said “We’re too busy living our life to worry about documenting it.” I didn’t really understand at the time, but I do now :D
2010 was an interesting year. As always, we had lots of illness and insanity at the beginning of the year, but things started to settle down a bit as spring arrived. By about April, I had begun to talk to our pediatrician about the twins’ now clearly evident speech delay, and he had raised concerns about Fighter’s focus and decreased sensitivity to pain. Less than six months from their third birthday, though, was really too late for Birth to Three services, so we began looking into other options. Superhero started playing tee ball, and LOVED it. Artist cried every game because we wouldn’t let him play, too: D John continued to work on his Masters in Counseling. And I went back to school at Marshall—I am enrolled full time in their Business Management program.
Then in May, John was hurt at work. He was breaking up a fight and ended up being attacked by one of the students, resulting in damage to his spinal column. He finished out the school year, but it was clearly evident that he was not up to par. He wasn’t even able to practice tee ball with Superhero in the backyard. As summer came and went, his condition didn’t improve, and his mood clearly worsened. We had planned a trip to Canada the year before, so we went, but it was probably the most stressful trip of my entire life. Worst of all, John had been looking forward to taking our boys to Canada literally since before they were born, and he was in so much pain while we were there that there was no real connection. While the boys and I both enjoyed our first trip to Canada and Niagara Falls (and I have to admit I’m more than a little pleased that they visited another country before they started kindergarten!), it was still nowhere near the trip it would have been before John was injured.
When we returned, John and I had a long talk about the trip and his injuries, and finally decided to get an attorney to handle the logistics of what were now clearly going to be battles with worker’s comp. It was a great decision, but we’ve still got a battle ahead of us.
As fall arrived, John became almost despondent when it became clear he wouldn’t be able to return to work on time. It was horribly tough on him—John has worked steadily since he was a teenager, and teaching isn’t just what he does, it’s who he IS. But we muddled through, and it was nice to have him around for some of the tough decisions that were coming. Superhero started kindergarten and community soccer, and suddenly I was a soccer mom: D John handled most of tee ball season, since a large portion of it was before he was hurt, but soccer was almost entirely me. I think Superhero enjoyed the time with mom, but of course it was still hard when daddy couldn’t be there or couldn’t help out. Around the same time, we took the twins for a speech screening, and were more than a little shocked when after just a few minutes we were told that they needed a LOT more than just some speech therapy. Soon, we were caught in a whirlwind of testing and opinions (with a bout of croup thrown in in the middle—THAT’S an experience I could go the rest of my life without repeating!), and suddenly, decisions had to be made. We decided on Cincinnati Children’s hospital for a complete developmental workup—while they have one of the better developmental teams on the East Coast, they also have a LONG waiting list, so that appointment will happen this summer. In the meantime, the twins are in a special needs preschool class (two years before we had planned to send them to school). We have also begun occupational and speech therapies at a pediatric therapy center, and Fighter will be having physical therapy for a few months at the same center. And in a few weeks, they’ll have an evaluation at a clinic that specializes in behavioral therapy, a treatment that has a proven track record with children with sensory issues.
And the question I invariably get at this point in the story is ‘So what’s wrong with them?’ My answer? “ABSOLUTELY NOTHING IS WRONG WITH THEM—THEY’RE NOT BROKEN!” :D They are, however, developmentally delayed, especially in speech and attention span. Fighter almost certainly and Artist & Superhero quite probably have a sensory disorder—whether that means autism or something else entirely remains to be seen. What does that mean? Well, it means they process the world differently than the average child. They’re exceptional, which of course I knew before they were even conceived: D :D :D While it’s awesome that Fighter loves the feel of the sun on his face and the wind in his hair to such a degree that a sunny spring day has him standing outside with his eyes closed, his head tossed back, and a look of pure joy on his face, it is not so awesome that he sees no reason why he can’t run around a busy parking lot. And while his world is a beautiful one, without the ability to communicate there’s no room for anyone else in it. It’s incredible that Superhero can read on the level of someone three times his age and that his reasoning skills put mine to shame, but if he doesn’t learn to think before he acts, it won’t make a difference. And Artist is highly intelligent, but no one knows it because he has difficulties communicating his thoughts, and he’s a sweet kid, but he hides it very well with his frustration-fuelled tantrums. Fighter’s issues are the most extreme, but the other two need a little extra guidance, too. Our goal with therapy is not to teach them conformity or to make them ‘just like other kids’, but rather to help them figure out what they need to do to function in the world they live in. Our goal is not to limit them with labels and diagnoses, but rather to set them free with the skills and coping mechanisms they need to follow their dreams wherever they may take them—as long as they don’t take them into the path of oncoming traffic: D
We’re making substantial progress, too. We’re working with a team of educators and counselors at Superhero’s school to help him channel his excess energies in appropriate ways. Artist will be seeing a hearing specialist soon to make sure his hearing is ok before we do some intensive speech therapy. And Fighter is responding so well, both at school and at therapy, that it’s almost like he’s a different child. John is back at work—though that is honestly less because he was ready to return and more because our bank account was empty. John, also, has shown a significant amount of improvement over the past couple of months, and we’re very hopeful that a new treatment he’ll be having soon (epidural steroids—they’re going to inject steroids directly into his spinal column) will give him some much-needed pain relief.
It was pointed out to me after my last update that my ‘family updates’ rarely include an update on ME, so I’m giving myself my own paragraph : D As I mentioned, I went back to school this year, and while I’m still quite amazed that I’m studying business management, I’m truly enjoying it. I also, thanks to Tabitha Black and her quiet belief in me, learned to knit (though I haven’t touched my knitting needles in months now ). And I took the Wilton Basics cake decorating class (again with Tabitha)—I wasn’t exactly a stellar student, but it did get me out of the house for a few hours a week for a month or so :D I don’t sleep enough, and when I get sick, I’m sick for days because I’ve spent so much time burning the candle at both ends that I have nothing left. I am a wife, mother, student, friend, daughter, blogger, therapist, chauffeur, personal secretary to four people, advocate, keeper of the family calendar, the family accountant, and on and on, and I’m still trying to figure out how to balance all of that AND get the sleep I need :P. I am learning who I am, and who I am not. I have discovered that I’m not the person I thought I was, but I’m a lot like the person I always WISHED I was. How’s that for awesome? When I was pregnant with Superhero, my biggest fear was that he would be damaged in some way, and that I would be unable to cope with a child who did not meet my expectations. I remember whispering to John late at night, in the dark (as if such thoughts couldn’t even be allowed to exist in a normal voice or by the light of day) “What if there’s something wrong with it? What if I can’t love it?” Funnily enough, it turns out that ‘it’ was the wrong descriptor—the words I should have used were ‘him’ and more importantly ‘mine’. It also turns out that ‘wrong’ doesn’t mean ‘broken’. Sometimes, all it means is ‘unique’ And it also somehow turns out that somewhere between the parasite who cracks your ribs and the screaming banshee who poops on your brand-new pants, the love appears. I was worried that I wouldn’t have the fortitude to love my child if s/he wasn’t perfect. Turns out, I was wrong on both counts—first, my boys ARE perfect, even with some of the issues I was so afraid of, and second, I’d love them fiercely even if they weren’t. They’re so easy to love that it doesn’t take any effort at all—I’d actually have to work at NOT loving them! What DOES take effort is caring for them and giving them what they need, and I constantly feel like they need more than I give. Luckily, in the midst of one of my worst I’m-such-not-the-mom-he-needs panic attacks, in stepped Tabitha with the advice that has become my mantra:
“You may not be the mom he needs, but you’re the mom he’s got, so suck it up.”
And she was right, as usual :D I’m impatient and demanding, I don’t always consider the effect of what I’m going to say before I say it. I can be flighty, I always take on too much, and I often get overwhelmed. But no one, ever, anywhere will love these boys more than I do. No matter what else I am, I am their MOTHER, and I always will be. So I’ve (almost) stopped wasting time beating myself up about not being the mom they need, and instead put my energies towards BECOMING the mom they need. Most importantly, though, I’ve found that happiness is no longer a goal for the future—it’s here. In the middle of the laundry and the tantrums, the worry and the stress, the bills and the never-ending housework, I’ve found my happiness. Even on bad days, my heart is filled with such joy, such peace, that it is absolutely indescribable.
And so, here we are. 2010 was an amazing year, both in good ways and in not so good ways. But overall we are living, growing, thriving. The road isn’t always smooth, and I’m not sure exactly what the destination is, but we, as a family, are enjoying our journey together. Someday in the not too distant future, I will quietly stand back as my babies take the first tottering steps onto their own roads, without a destination in sight. It is my hope and fervent prayer that I will have taught them by example that it is the journey that matters, and to enjoy each and every step-even the stumbles-along the way. In the meantime, I will enjoy having their hands in mine, tottering along on my own path, exuberant in the knowledge that whatever else we all are, we are a family, we share a joyous love, and we are incredibly, amazingly blessed to have each other.