Posts tagged ‘diagnosis’
We’ve been waiting for it for years. Contemplating it, wondering how it would go, and thinking about the end result. Would it be awkward? Would we all be embarrassed? Would we leave something out and C would misunderstand? Would we convey the most helpful possible message to C in the hopes that he would navigate his future armed with the necessary information to be successful?
No, I’m not talking about the SEX talk. I’m talking about an equally important talk - the one where you tell your child he has a diagnosis. It’s something parents agonize about, plan for, and worry over. If you watch Parenthood, as we do, you watched Max’s parents absolutely botch their first attempt to explain Max’s autism to him. It was beyond bad. Our experience, however was the complete opposite. It was the most anticlimactic, non-event you could possibly imagine.
We kind of pushed ourselves into having the discussion simply because we were afraid C would hear it somewhere else, a la Parenthood (where Max hears it brought up during a family fight), although hopefully not in such a dramatic fashion. We are an open book; C’s friends’ parents know, the neighbors know, random people at the park know. Doctors, teachers, the people at church. It was time, but we knew C wasn’t ready.
You see, this child of ours is perhaps the least introspective person on the planet. It’s charming, at times, how unaware of himself - his actions, and the effect of those actions on others - C actually is. He is convinced the whole world loves him, and while he is incorrect in that assumption, his delightful unawareness means C is enthusiastic without care about what others think. There is no soul more uninhibited than C’s. He takes joy in the most mundane things and shows no qualms about sharing that joy, regardless of the consequences. Oh, yes, we’ve tried to redirect, calm, and make appropriate those happy outbursts, but there is no squelching it – social appropriateness be damned. C has no care, nor does he seem to understand, that he is often acting against the norm.
C has his moments; he worries about not wearing a belt to school (despite having permission to not wear one) because the other kids will notice he is out of uniform. He worries about wearing a necklace to chew on because he worries no one else does that. But that’s as far as it goes. Someone doesn’t like him? No way, no how. He won’t hear of it. Impossible. C is not in denial, but rather he is just complete and utterly unaware.
So what does one do with a child so clueless about his own special differences? You point them out, of course, gently. Remember, C, how difficult it was for you to learn to ride a bike? How much you struggle with handwriting? How much you hate it when a loud noise surprises you? “Yes, yes, and yes,” he said. And you know how awesome you are at math? How amazing your memory is? How much you like to learn each and every possible piece of information about each and every Pokemon? “Yes, yes, and yes.”
That’s autism, C. That’s what makes you so special.
“Okay. Can I go outside now?”
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.
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.
I’ve always been an open book when it comes to C, and I generally share his diagnosis with just about anyone. C himself doesn’t know, although he’s seen the A-word on books I have sitting around the house, heard me say it to people, and probably actually does know it means something for him. Frankly, I’m surprised he hasn’t asked me what autism is, given his curiosity about every other word in the English language. Yet we haven’t started the discussion with him because we don’t feel he’s ready to hear how different he is when all he’s interested in at the moment is being the same as everyone else.
As C and his peers are all becoming more aware of all things, I now find myself closing up in order to protect him. A reporter is coming to see him at school in the morning to talk about a charity project C is working on, and I had to call the reporter back after our initial conversation to tell him to please not use the A-word in his article. Despite C’s autism being the subject of several newspaper articles a couple of years ago and C’s loving that his picture was on the front page, now his classmates can actually read and I’m quite sure they’ll read this article. The last thing I want them to do is have a name for him that is not his own.
Every once in awhile, I get caught up in this debate with myself about C and his diagnosis. He is certainly a far different child from the repetitive speaking, incredibly delayed, challenging child he was when he was diagnosed with high functioning autism years ago. But is he “recovered” and we just somehow missed it? This time my internal debate was started by an occupational therapist, who admitted her relatively high evaluation of his skills was likely due to the fact that she sees kids far more challenged than C is - while seeing no “typical” children ever. It was furthered later, by a visit to a pediatrician we only see for acute care, and have only seen twice.
C is a master at many things. He has changed from the absolute screaming nightmare upon walking into a doctor’s office (picture rolling around on the floor, trying to evade the doctor’s touch, and being restrained simply to look in his ears) a year ago. He has learned, through intense social story and prep work and a series of great, patient docs, that for the most part, it’s a battle he doesn’t need to pick. This new pediatrician we saw today (who has been fortunate not to witness such an event), commented on how well behaved he was. This was followed with a second strong push to put C on zoloft to “fix” his feeding problems. Does this man, lovely as he is, know anything about autism?
It only takes one moment, one brief experience, to snap me back to reality and the knowledge that yes, C is on the autism spectrum; undoubtedly he’s firmly fixed on one end of the spectrum, but on it he is. Kids on the spectrum can be as different as night and day. I have yet to meet two children with the diagnosis who share more than a few similarities. That is, for those who look closely enough.
As I was watching recess on the last day of school, I talked with two delightful women who work with C on occasion. While watching C play, I noticed things they did not. Yes, he is happy. He is often cluelessly happy. Yes, he is delightful and friendly. Yet I watched as the two boys he was playing with whispered behind his back about how to get away from him after they went down the slide. C missed it all, blessedly. Smile on his face, he appeared happy and engaged in play, yet everyone but the closest observer missed the fact that the other kids were plotting against him and he didn’t even notice. That is C’s autism; happily playing along, occasionally connecting with other kids, but mostly appearing to connect while he remains mostly oblivious. It’s just not obvious.
Yesterday, at a public pool, I noticed a similar occurrence. Two little boys about the same age were teasing C while we floated on the lazy river. He took the whole thing as being an elaborate game of chase. He had no idea that the boys were making fun of him. I looked at him, while we participated in the charade, and wondered if I should take his childish sun hat off. Maybe THAT’s why they were making fun of him. Then it hit me. Taking his hat off wasn’t going to do anything; he just has autism. High functioning, sure. Perhaps even invisible to people like his new doctor, who probably thinks whomever diagnosed him was a quack (not the case). Yet I use those experiences to separate the really, really good professionals from the ones who clearly have more we can teach them, C and I.
The day after hearing what the occupational therapist had to say was the day of the double temper tantrums in C’s ”very bad day” (see here). A dear friend, who has a son with autism, told me it was the world reminding me that yes, C is in fact autistic. “Don’t doubt that,” she said. “It’s a waste of your valuable time. Just move on from those people who aren’t able to recognize the challenges he faces, those that are masked by his personality. Just move on.”
People have found this blog in various ways. About 50-75 people visit daily, and for the most part, I have no idea who they are. But they leave a trail; a trail that makes me wonder if they are getting what they need from “What We Need.” The website keeps track of the google/yahoo/[insert your search engine here] searches that land someone here at my humble online abode.
There are comical searches, such as “he’s not giving me what I need in bed,” “does God say touching breasts is wrong?” and “how to present a giraffe to a preschool teacher.” There are ones that make me wonder how in the world they ended up here, such as “we need one car to take him to the city” and ”why babies make spit bubbles.”
The ones that really get to me, however, clearly come from people who need something from their search. These searches are probably like the desperate ones I used to put in early on with C when we had no idea what was going on with him. “Help, I think my child has autism.” “Is sensory integration disorder considered autism?” “Preschool street signs obsession.” “Hypotonia, sensory integration, failure to thrive.” “How do I get my child the help he needs?”
I imagine a parent, late at night, exhausted but unable to sleep, perhaps worried about an infant or toddler who was premature but hasn’t caught up like preemies do. They are wondering why their child lines up his trains in perfect order, why their child seems to have constant tummy aches, or why their child opens and closes doors continuously. It seems that some are wondering if the first diagnosis of one thing will really end up being autism after all. It’s a scary time for a parent, because while I don’t think we expect our kids to be perfect, we expect things to be perfect for our kids.
While raising C has been nothing like what I expected it would be, I wouldn’t change him for anything. He has so many gifts, so many amazing qualities, and so much to offer the world. I can’t say it’s all been easy, not even close. But the benefits far outweigh everything else. So whoever you are, sitting out there, staring at a computer screen and wondering what it all means, I hope you’ve gained some comfort here.
I’ve heard people talk about the five stages of grief in terms of dealing with a serious diagnosis for a child. You grieve for what they might have been, the loss of normalcy, the things you thought you could take for granted. I, for one, feel like I have gone through the stages of grief in varying degrees multiple times with each new issue that arises. I change from stage to stage in any given year, month, day, and even minute. From day C was born (and subsequently nearly died), we’ve been dealing with one thing after another. That’s not to say there haven’t been good days; happily, there have been many, many of those. But as each new issue started, I kept thinking “This will be it. This will be the last thing to happen.” I no longer say that to myself.
Here’s the list: respiratory distress syndrome, pneumothorax, pulmonary interstitial emphysema, pulmonary hypertension, hypotension, sepsis, apnea, bradycardia, oligihydramnios, prematurity, tracheomylacia, global developmental delays, oral motor dysfunction, failure to thrive, hypotonia, sensory integration dysfunction, reflux, reactive airway disease, asthma, left-side weakness, ankle pronation, atypical tongue grooving, toxic synovitis, ataxia, verbal apraxia, oral apraxia, plagiocephaly, food allergies, unspecified autoimmune disease, impaired methylation abilities, yeast problems, absent glutathione production, high functioning autism, developmental coordination disorder, hyperlexia.