In most ways, special needs parents are very much the same as other parents. We all want the best for our children, we want them to be successful in life, although what that means for each of us is different, we want them to be happy and know that they are loved.
But there are also some specific ways that special needs parents differ.
1. We might be oddly easy-going about certain issues.
1. We might be oddly easy-going about certain issues.
We often learn very quickly to choose our battles, sometimes peace is worth letting go of certain rules or expectations. And sometimes, we just have bigger things to worry about, and those things take over so much of our energy that the little things stop mattering so much. When my son was much younger he spent several years as a chocolate milk junkie. I was mortified, particularly because during my judgmental pre-kid days I was sure my children would eat whole-grain, organic, non-processed foods, and a sugar-free diet.
And then, my son got sick, and things were really scary, and we didn't know how much longer he was going to be on this earth with us. And when you are living with that constant fear in the back of your mind, you really aren't worried anymore about how much chocolate milk your child drinks. You just want to make happy moments and cherish every single one, even if they mostly include a sippy cup of chocolate milk!
2. We are also very strict about other things.
Bed times, homework schedules, dietary concerns, we might go off the deep end about red dye, or gluten, or dairy in our kids meals. We might get worked up about bedtime, which seems so trivial. But there is probably a really good reason behind our concern. For instance, we know that not getting enough sleep can lower a child's seizure threshold, and also make them act like a jerk. Sometimes a minor schedule change (for instance doing homework after dinner instead of right after school) can lead to a three hour tantrum. So while we might seem over the top with some things that seem silly to you, in our world it is probably for a very good reason.
3. We have memories like an elephant.
It’s always remarkable to me the things that I can remember, especially at those specialist appointments where they play that 20 questions game and I’m supposed to regurgitate every detail of my child’s past. What year was that surgery? Who was the surgeon? What are the medications and doses? No problem I've got that all tucked neatly away. Next week my kids both have a clinic appointment in the morning, and my son has a dentist appointment in the afternoon, and then he has a specialist appointment after the dentist. I have all of those appointments and their times and locations locked tightly away in my mental calendar and backed up in my phone. I've got this!
It’s always remarkable to me the things that I can remember, especially at those specialist appointments where they play that 20 questions game and I’m supposed to regurgitate every detail of my child’s past. What year was that surgery? Who was the surgeon? What are the medications and doses? No problem I've got that all tucked neatly away. Next week my kids both have a clinic appointment in the morning, and my son has a dentist appointment in the afternoon, and then he has a specialist appointment after the dentist. I have all of those appointments and their times and locations locked tightly away in my mental calendar and backed up in my phone. I've got this!
4. We have memories like a goldfish.
Except when I don’t… because sometimes I drop the ball. I like to think that I have it all together, but I definitely don’t. That day with the three appointments, I didn’t realize I triple booked that day until a week before it was about to happen, and it was just a miracle that I didn’t overlap the appointments. I once left work early, picked my son up from school, took him to an appointment to find out that A) I had not booked that afternoon off and leaving at lunch unexpectedly threw everyone I work with for a loop! And B) The appointment was the following week, same day, same time (which I did book off). Sadly, the memory situation is not foolproof.
Except when I don’t… because sometimes I drop the ball. I like to think that I have it all together, but I definitely don’t. That day with the three appointments, I didn’t realize I triple booked that day until a week before it was about to happen, and it was just a miracle that I didn’t overlap the appointments. I once left work early, picked my son up from school, took him to an appointment to find out that A) I had not booked that afternoon off and leaving at lunch unexpectedly threw everyone I work with for a loop! And B) The appointment was the following week, same day, same time (which I did book off). Sadly, the memory situation is not foolproof.
5. We bring a whole new meaning to over-scheduled.Back in the early years it was 10 hours of therapy a week (plus driving there and back) and a smattering of extracurricular things, swim lessons, or library reading times. Then we added in preschool, and were gradually discharged from the outpatient therapy services, occasionally going back to revisit some over the years for brief stints. Once we graduated from outpatient therapy (which typically means they don't think they can do much else for your kiddo, not that all or even most symptoms are resolved) we started picking up sports to keep active and attempt to maintain skills. Swimming, track, archery, our weeks are a blur. And of course, we can't forget the specialist appointments, MRIs, EEGs, follow ups and med checks, brace fittings and adjustments, surgeries etc etc. It's a good kind of chaos and I wouldn't have it any other way, but phew, it's exhausting sometimes!
6. We have our own vocabulary.
AFO (ankle foot orthotic), EEG (electroencephalogram, usually used to check for seizures), hemiparesis/hemiplegia (weakness or paralysis on one side of the body), CP (cerebral palsy, when damage to the brain of a baby causes them to have motor difficulties), ASD (autism spectrum disorder), NJDC (National Junior Disability Championships), SMO (supra-malleolar orthosis), foot drop (when the toes drop down when a person steps, often causing tripping), hypermobile joints (joints are too floppy, this can cause damage to the joints over time), spasticity (muscles are very tight and rigid and can be difficult to move into different positions), contractures (often caused by spasticity over time, can lead to joints being permanently fixed in one position). Those are the ones that I can think of off the top of my head.
7. We are fiercely protective.
7. We are fiercely protective.
We have seen our children hurt by medical professionals and listened to them cry out “mommy, please, make them stop hurting me” and been so broken because we couldn’t protect them from the necessary procedures. We worry, probably more than most parents, about teasing and bullying. We are alert to how family and friends treat our children. We have seen other kids roll their eyes, or walk away from the area when our kiddos approach. We have fought for IEPs to be written to meet our kid’s needs, and then fought for them to be followed! We have patiently educated school personnel, coaches, doctors, Target cashiers and random people on the street to try to create a more understanding world. There is nothing wrong with our children, but there is often something wrong with the society that struggles to accept them as they are. And so we want to wrap our arms around our little (or big) ones and keep them safe from that world!
8. Some of our closest friends are people we have never, and may never, meet in person.
That’s pretty strange right? I have never met some of my closest friends in person. They are people I have met online through groups set up to allow parents of children who have similar challenges to connect and help each other out. There is nothing like feeling understood and heard by a community of people who have similar experiences.
9. We often feel misunderstood.
No matter how much we love and are loved by our family and friends, it’s just so difficult to understand what a person’s day to day life is like when you aren’t living it. I realize that we can be somewhat oversensitive at times, and fiercely protective so we might at times get bent out of shape over comments that are meant completely innocently. Many years ago when my son was still quite small and we were just settling into what it means to have a child who has special needs, I used the word disability in reference to my sons challenges and his needs in a conversation with a loved one. The reaction I got was so hurtful and negative that I still remember the sting today. Something to the effect of “he is not disabled, don’t use that word”. I get it, you love him, and you don’t want to think of him as anything less than perfect and you don’t have to! Disabled and perfect have gained a quiet harmony in my mind in reference to my son. He is exactly the person he is meant to be, challenges and all.
No comments:
Post a Comment