Posts tagged ‘developmental delays’
I worked on a research paper with my favorite professor in college. Part of our hypothesis was that behavior doesn’t change language. After showing that no matter how integrated Spanish-speaking people became in American culture, their ties to their native language did not change, I became a believer in the idea that language changes behavior as opposed to the other way around. While I wouldn’t go as far as saying the book The Secret is truth and gospel, I do believe there is much power in the thoughts and words we chose to believe and use.
That probably explains my attempts to constantly see the upside for everything going on in our lives. Husband getting downsized last spring? The initial freak-out was replaced by the thought that it was an opportunity for him to find the perfect job, since the other one was clearly not. C getting picked on at school? He will grow up to be a much more sensitive person. My own health going off the deep end? It’s an opportunity to really change the course of how I will feel in 20 years and take stock in both my physical and emotional well-being.
However, to be totally honest, there are huge gaps of simple, utter frustration and stress. While I think we’ve certainly accepted what is with C and actually take quite a bit of joy in the things his diagnosis brings both him and us, it does take its toll. Some days, within 15 minutes of his being home from school I’m ready to jump out the proverbial window, despite living in a one-story house. I wonder if I have the patience or stamina to give this child what he needs, because I often think what he needs is so much bigger than what I can give him. And sometimes that frankly just sucks. Raising a child with a diagnosis is hard, and it’s a lot of work. It takes its toll on me as a parent, and no matter how much I love C just the way he is, I can’t stop the gray hair from coming, my heart from being weary, and my head from sometimes craving an escape to somewhere, anywhere, but here.
When I was in high school, I felt constantly on the outs. If we had been in the game of Survivor, I surely would’ve been voted off the island. Truly, my whole life I’ve never really felt as though I fit in anywhere, which astounds my mother, the goddess of all things social. My different-ness then came not from a diagnosis like C’s, but rather from not being a party girl coupled with wanting to move on to bigger and better things from the what-was-then-but is-not-now cow-town in which I grew up.
My different-ness now, however, is one in which I revel. I love being Mom to a special needs kid – I feel as though I’m part of a wonderful club of awesome (if slightly zombie-like) parents. Since I have been writing this blog (almost two years now), friends both new and old have come out of the woodwork sharing stories of their own children with challenges and gifts all their own.
As I look through the faces of friends on Facebook, I think back to those high school days and know that none of us ever thought we would be those catatonic parents trying to help their very special kids gain a foothold in this complicated world. I don’t even remember there being very special kids in high school, although I’m sure they were around. Yet now they seem to be everywhere, touching friends’ lives in profound ways most people can’t even imagine.
So instead of voting people off the island, I think I’d invite everyone to join me on it. Let’s create a special place where all of our amazing kids can grow and develop at their own pace, run free without aid, and where they always, always, fit in.
I remember the first developmental pediatrician we ever saw; she was the one who gave C three diagnoses to add to the zillion that came before: high functioning autism, hyperlexia, and developmental coordination disorder. “Get him into team sports,” she said. “He needs the socialization. Soccer, maybe.” This was after I said I was thinking about karate, which I’d always heard is good for kids with autism.
We tried both soccer and karate, with varying degrees of success ranging from marginal to disastrous. Soccer was a special needs league. It was like a field of kittens with puppy buddies trying to help the kittens play on a team. It was all sweet and good, but it was useless for learning much of anything. In the team picture, which I look back at with a mix of bitter and sweet, not a single kid was looking at the camera. I took that as a true reflection of the delightful insanity that was that soccer season.
Karate, however, was a nightmare. Movements and sequences that were way too hard were combined with 25 kids in a loud gym and an instructor so strict and uncommunicative that C had no idea why he ended up in time out halfway through the first session. We made it through exactly three classes before we forfeited the ridiculous amount of money we paid for that semester and never looked back.
Team sports have now given way to individual ones, and tennis and golf seem to be of interest. Now, in our third fall in one place, C is taking tennis lessons for the third year. He has always had but one goal: to hit a ball over the fence. He couldn’t even come close the first year, and last year wasn’t much better. It wasn’t until tonight, in his second lesson of his third year, that he proudly and solidly sailed a ball right over the fence and into the likely rattlesnake and scorpion infested bushes.
I suppose that tennis ball is a metaphor for C’s amazing growth and progress in the last few years. If I were the type of Mom who revels in these things, I’d see all kinds of not so hidden parallels between all these years of effort and the ultimate achievement of such a lofty goal. I’d get teary eyed with the thought of how hard C had to work to get this far. Instead, I gladly ventured into those bushes to retrieve said tennis ball, all the while sneakily wiping non-tears from my eyes.
I’ve written a lot in the past about the stages of grief when dealing with a diagnosis of any sort for a child. Having experienced both medical traumas along with the developmental challenges, I can say the medical traumas were more immediate and frightening while the developmental ones still sometimes keep me up at night.
However, I suspect for a lot of us, there comes a time when we pass through something akin to acceptance. There are frequent blips back to denial and anger smattered in there, but for me, I’m mostly hanging out in the land of “what is” these days. It’s not that I’ve given up and stopped trying to give C the tools to make his path in life that much easier, but I think all parents do that. And it’s not that I think there’s nothing left we can do to make C healthy and happy. We’re doing that too.
I suppose I’ve just settled into being a parent, and a parent to this child in particular. I remember once talking to the parent of an adult child with autism, and she (so haughtily, it seemed to me) smiled knowingly when I told her about doing hab work and supplements and a zillion therapies. “Oh yes,” she said, “I remember those days. You’re still in that period of frantically trying to do everything you can thinking your time is running out.”
I was moderately offended, even after I realized she was right. I didn’t really need to hear it at the time, and if I could have the conversation to do again, I’d remind her that at one point she was in the same place I was. We all go through that; the initial stage of late nights, plugging in every keyword from the neurologist’s report into google trying to find something that will explain what is happening. I’ve been through the constant therapy appointments, driving six hours round trip once a week over two major mountain passes simply for feeding therapy. Couple that with OT, PT, ST and hab, and we had a full load for awhile.
Now I’m sort of between the Mom who seemed so condescending and the Mom I used to be. Somehow, where I am now is not quite so frantic. So harried. So wearing. There are still days that seem like they will never end, and there are still tears of frustration at times. But for the most part, there is more calm. I’m not googling all the time. I put on jewelry and sometimes even make-up. The all day sweats and ponytails, while still present sometimes, are mostly behind me. I even have some friends that have nothing to do with special needs kids. And sometimes, we don’t even talk about our kids at all.
Just like our spectrum kids, I don’t suppose all of us parents have landed in the same place on the continuum. I hope when I get to the place that Mom before me was, I’ll remember what it was like to be in the thick of things with my kid and be empathetic to those in the trenches. But I’d also like to tell the parents coming up behind me that they’ll get here too, eventually. Maybe not at the same time or place that I did, but the peace will come. I promise.
A scourge has hit our household; one with the destructive force unparalleled except perhaps by locusts or tornadoes, although I see the similarities, quite frankly. “Defiance” with a capital “D” has landed in our roost. I’m not sure exactly when it started, yet I suspect if I really sat down to analyze it I would see the precursors many years ago. At first I thought it was perhaps a delayed developmental stage, but this two year old “NO” kind of thing is way past its time, delayed or not.
Usually no one but Husband and I witness C’s most deplorable behaviors, so I admit to sometimes needing a reality check about how bad (or not bad) they truly are. People (translation: my Mom) tend to be skeptical about the extent of problematic behavior we experience at home, mostly because he rarely exhibits it elsewhere or in front of anyone but us. Enter a road trip, complete with Ga (aforementioned “Mom”), C and I last week during fall break. San Diego called, and we wanted C to see the ocean for his first time. The trip was great; Legoland, Sea World, and the beach all competed for the most fun day, and C did really well handling it all. It wasn’t until the last night, probably completely worn out from the week, that C pulled his worst behavior out of his hat. My Mom was stunned. It prompted a long conversation after C fell asleep about what’s been going on at our house. C repeated the behavior the next morning. A screamed “NO, I WILL NOT DO THAT!!!! AAAAAHHCCKKK! I WILL NEVER DO ANYTHING YOU ASK ME TO AGAIN!!!” complete with other gobble-dy gook I’d rather forget left Mom speechless.
We piled in the car and came home, leaving Husband and I to do a behavior boot camp this weekend. Lots of long faces from us and talks about being respectful, a few toys lost, some favorite shows erased, and the jury is still out as to whether we’ve made any progress. Like other problematic behaviors we’ve experienced in the past, this one will hopefully go out like the tide. I’m just worried about what comes in after.
We have a pot on our front porch in which a desert quail pair have made their nest. Eagerly we watched as one after another egg appeared. With a grand total of 15 eggs, Momma Quail settled in to sit on them day after day. We left on a 10 day trip figuring we would miss the hatching, but much to our delight, Momma and eggs were still here upon our return.
Yesterday, when C cried to me because no one has invited him over all summer, I wondered again about our choice to have only one child. A choice made for a variety of reasons, and a decision made largely before C was born. Husband and I each have a brother, and while there were many times in my young life I would’ve paid someone to borrow my brother on a permanent basis, I now consider him the closest of friends. I regret C won’t have any siblings, nor any cousins, and wonder if someday he’ll feel all alone in the world.
Yet I knew, deep in my heart, that I only wanted one. Our early and later struggles with both C’s health and developmental challenges further solidified this decision, as we felt it imperative to give C our full attention. I look at large families with both admiration and awe for the energy Moms and Dads seem to have. Husband and I both recognized our own fatigue, partly due to our starting a family later in our lives as well as due to the issues we faced with C.
I know families with lots of children, and they parent their brood with a grace, patience and skill I simply do not possess. A friend and her husband, after giving birth to 5 biological children, decided to foster, and subsequently adopt, a child with extreme bipolar disorder, fetal alcohol syndrome and asperger’s. Another friend and her husband have adopted 5 children, all on the autism spectrum, and are raising them off the grid with homegrown food, homeschooling, and the constant love and attention they need so desperately. In my book, these people are saints.
As we watched this evening, another large family was born. A number of the 15 eggs hatched in our pot, and Momma Quail kept reigning the hatchlings in with her wings and ensuring they didn’t make the jump to the ground before they were ready. I reflected on what must be the joy of having a large family at the same time I reminded myself that having another child simply for a playmate for C would not have been a good decision. As he watched the pot through the window for glimpses of the babies, C announced he’d like to be a quail, and when I asked him why, he replied he’d like to know how to fly. Although I can’t help but wonder if it isn’t just that he’d like 14 playmates to call his own.
Leave house 20 minutes before school is out even though we live 2 minutes away from school to ensure spot in front of pick-up line. Be glad C and what loosely could be called “friend” B have stopped bickering over whose mother comes first which always ends up in tears for C because either B’s mother came first or because B is upset because I came first. Be annoyed that the newest pick-up obsession is that I have to be in first 10 cars in line. Be annoyed at self for giving into this neurosis but know that picking up a crying child is not a good thing and know that this obsession, too, shall pass. Worry about what next obsession will be.
Arrive at school, am car number 7, breathe sigh of relief. Turn car off and listen to radio to try and catch up on day’s news. Be reminded that many, many millions of people have stresses far worse than ours, resolve to be happy, positive, thankful person. Feel blessed. Wait for bell to ring. Watch for C to come out of building and know simply by the way he waves before approaching car will explain tone of his entire day. Be happy when wave is appropriately jubilant and resist opening door from inside as newly found independence in opening door is a good thing as long as fingers don’t get slammed. Encourage him to get in car before starting to tell about his day as there are approximately 10 zillion cars behind us waiting to pick up their kids. Remind him to be careful closing door and silently chuckle remembering the time when door was simply too heavy and he fell right back out of car onto sidewalk. Revel in fact that he’s socially aware enough that he actually felt embarrassment at that incident, and marvel at how quickly I got out of the car and around to the other side to see if he was okay (he was). Wonder if I could ever move that fast again.
Get door closed, pull away, stop once past the pick-up line to buckle into 5-point harness mentioned before. Ask about day, about special, about who sat by at lunch, who played with at recess. Listen to recitation of school announcements, lunch menu, which classes had perfect attendance and wonder if anyone else in the entire school even listens to that stuff half as carefully. Wonder about streaming text TV they have in classroom and be amazed that C ever tears his eyes away from it. Wonder if they’re putting subliminal messages in there somewhere because if anyone would have them sink in it would be C.
Get home, greet dog, wash hands, empty backpack, talk about homework, make snack. Wonder when this will become routine enough that I don’t have to prompt, and figure it will become routine about the time school is out for summer. Have snack, do something fun or have in-house therapy session. Start thinking about dinner, plan dinner, get dinner started for grown-ups, make dinner for C. Preferably (for him) something that can be dipped in ketchup. Search shelves of freezer making sure to get proper GF/CF/egg free for C and be impressed with self that I finally gave each family member their own shelf with special food on it. Wonder how we got so many allergies in one family and remind self Husband doesn’t have any allergies and it’s really just self and C who have 9 zillion allergies between us. Eat dinner, stay at table afterward to do homework. Remind C to write slowly and wonder if am striking appropriate balance between Encouraging Mommy, Nice Mommy and Task Master Mommy. Take bath (complete with epsom salts to draw out toxins, baking soda to draw down stomach acid, and vapor bubbles to draw out sneezes). Get out, slather in lotion made of absolutely nothing because absolutely everything causes rashes, put jammies on, make up silly compound words because THAT IS WHAT WE DO after a bath.
Do bedtime chores, wonder if we’ll ever be able to move box of baby toothpaste closer to toothbrush area (step 4 in the 90 step process necessary to introduce toothpaste, which he has never used), and be thankful he seems to have inherited good teeth. Wonder how he will ever, ever, ever get through a full dentist appointment. Resove to make using toothpaste a summer goal. Remind self to start a list of all these summer goals I keep thinking about and wonder again about being Task Master Mommy.
Read book together, have a few minutes of hang out time, remind Daddy it’s time for lights out. Watch Daddy get cup of ice water, go into C’s room and sing song. Collapse on couch as Daddy finishes song, turns out lights, turns on noise machine, shuts blinds, and exits room, shutting the door to the exact same spot every single night.
Breathe for a few minutes and take bets with Husband as to how many times C will call one of us. Try to be Nice Mommy because C going to sleep unhappy does not make for a restful night for anyone. Try to balance patience (when C calls for us 13th time) with certain knowledge that we are completely and utterly allowing ourselves to be manipulated.
Crash on couch again and laugh at self when I think of how much I thought I’d get done tonight.
Shortly after C was born, he was put on a ventilator. Barely two days later, he blew a hole in one lung and had to have a chest tube put in. At that point, the doctors wanted him airlifted from our rural hospital to a facility in Denver for a more equipped intensive care unit. I remember watching the flight nurses wheel him away in a contraption that looked like a space shuttle, off into the blustering snowstorm to the airfield. I’ve never felt so alone in the world.
Numerous sleepless nights, chest x-rays, heart scans, and re-intubations later, we were allowed to take him home with oxygen attached. I remember asking the pulmonologist if he would be okay. A loaded question neither of us understood for what it was. What I was asking was, “Would he be okay?” What the pulmonologist thought I was asking was, “Would his lungs be okay?” His answer, wrong on both counts, ”Yes, he will be fine.”
I felt like we were leaving the hospital with a baby under warranty. Truly. So many times in those first years I wondered how this doctor could have been so terribly wrong. I wanted to call him and remind him of us and tell him that no, C was NOT in fact okay, in any sense of the word. In a weird, twisted way, I blamed him for everything, but at the same time, he probably preserved my sanity. If I had known what was coming, I would’ve collapsed on the spot. While he could have never known how much I took his answer to heart, it gave me hope during those really tough years because I still remembered his words. I had put so much faith into the answer to that question, and I think I held onto his answer for dear life.
When we finally brought C home from the NICU, our doctor told us we had to keep him cold free for his first year, which translated to my quitting my job and staying home. For that year, my entire social life revolved around nurses and therapists coming to visit C at our home. Once we got the all-clear, however, we started to venture out in the world. At about 2 years old, we decided to try him in play school one day a week for some socialization. After a long visit, numerous conversations with the staff, the big day finally arrived. I brought him to the school, and he happily toddled into the room. He had no words yet, and had only started walking a few months before. I left, anxiety and eagerness fighting for control as I triple checked my cell phone to make sure it was on.
I knew I had to come back and feed him lunch because of his feeding issues, so I went back early to observe. What I saw has remained one of my most painful memories. As I walked in the building, I heard the usual noise that one would expect coupled with something far more disturbing; the sounds of my own child’s cries, which any mother can pick out of thousands of such cries from a crowd of other children. As I approached, I saw him standing in the middle of the room, hands held up, fingers spread, tears streaming down his face. He was nearly hysterical in his sobs and as he stood there all by himself like he was all alone in the world. It was instantly obvious to me what was wrong – his hands were dirty. He hated having anything on his hands, and his frustration was obvious because he could neither communicate it verbally nor could he figure out how to fix the problem himself. “Boy, he sure is a screamer!” one teacher commented. I fought the urge to snap back at her that perhaps he wouldn’t be screaming if anyone had been engaged enough to figure out what he was screaming about.
After getting him cleaned up, we proceeded to lunch, at which all the children happily ate their mini-tacos. I sat on a little chair at a little table, surrounded by little people eating big people food. I fed C his baby food and started crying. I couldn’t stop crying, and was soon fighting back heaving sobs as I tried to decide what to do. The young teachers tried not to stare at me in their complete and utter discomfort. There’s no manual for this; I felt completely lost and alone in the world – much like he had been when I saw him earlier. It was the first of many such choices I’ve had to make for him in is life; ultimately I took him out of a bad situation, one in which he probably could have learned something had I left him in the midst of it, but one where the lessons would’ve perhaps been at too great a cost.