Posts tagged ‘asperger’s’

Unpacking

I wandered into my appointment with my therapist this week without a whole lot on my mind, really, except ongoing pain around which life seems to revolve right now. What came out of my mouth, however, were several revelations I’m not sure I even recognized for what they were until I spoke them aloud. Whether a high pain level lowers my internal filter or makes me care less what anyone thinks, I’m not sure, but it does seem to be an effective conduit for getting things out of my head and into the universe. And somewhat surprisingly, lightning bolts didn’t strike me down immediately for saying these things. Go figure.

The worst of the worst? I’m fairly ambivalent about seeing C when we visit him over Thanksgiving. I haven’t seen him since he left here in August. And he left after a rather violent episode that left us both hurting. Hubs was out of town, C went for pills I inadvertently left out, and the rest is history that will haunt me for years to come. Truth be told, I don’t know that I have actually forgiven him for that incident which, if I’m honest, is probably more at the root of my ambivalence than anything else.

When we talk with C on the phone, he sounds great. Things come out of his mouth that astound me. He seems healthy, well adjusted, and happy. But I don’t really trust any of it fully. It all feels artificial. We won’t know how he’s truly doing until he comes home, and even a visit won’t tell us much. Only when we are all back in our daily routine will we be able to tell if any of these newfound skills will actually stick, and I admit to not having a whole lot of faith in this process. Not really because of C, his treatment center, or Hubs and me. It’s more about the best predictor of the future being the past. Habits, dynamics, behaviors…they are all difficult to change.

So I wait. I continue to work on my sense of inner calm and peace no matter what is going on around me, because I know that’s really all I can do. Staying in the moment and all of that. I am a lot better at that particular skill than I was a year ago. Still, when someone is throwing things, body slamming closed doors, going for knives and pills, and screaming hateful things, it is fairly difficult to be very Zen. I am trying to let those incidents fade from my memory and recognize that a seven month break is pretty significant. A lot of change can happen in this time C is away.

Yet that voice in my head and heart continues. “What if?” I just keep trying to counter the negative answers with, “What if it’s great?” I am reminded of my own Nana, who had unrelenting faith in all of her children and grandchildren. Cousin X could have murdered someone and she would chalk it up to a phase that would pass. So I’m left wondering. What if C grows up, gains insight, recognizes his own role in life, and chooses to jump down on the right side of the fence? Now wouldn’t *that* be something?

November 11, 2018 at 4:17 pm 2 comments

You say “potato,” I say “potahto,” but let’s NOT call the whole thing off.

I’ve sat on the sidelines for many years while the discussion about grieving the life you thought your autistic child would have has gone on around me. I’ve read thoughts from adults with autism who are angry at parents for feeling this way, and I’ve read thoughts from parents who resent being told by adults with autism how they should feel about their child’s diagnosis. The entire discussion bleeds into the cure or not cure camps, “fix” or not “fix” camp, and whether or not autism is a difference or a disability.

None of that really matters to me. I hope my readers on all sides of the issue will forgive me when I say for me, the above is all semantics. I know it means an enormous amount to people how we talk about our kids because it says a lot about how we feel about them; and that how we talk about our kids extends to the autistic adults who have blessedly paved the way for our children. My intention is not to minimize the discussion, which I think is an important one. But I hope all of you will forgive me for dropping all of you, and talking only about my child, my feelings, and my life. I’m not trying to speak for anyone else – really just me.

I do mourn the childhood C would have had without autism in his life. One day many years ago, after dropping him off for school, I watched several children about his age walk to another school in the neighborhood, and felt an immediate pang of something…sadness, regret, loss – I’m not really sure what it was, and I pondered the feeling for quite some time trying to figure out where it came from and what it really meant. I decided I was missing my own childhood as well as feeling sad that C hasn’t had a childhood like my own – which, in hindsight, seems rather idyllic and simple and happy.

Somewhere, somehow, this feeling of loss of what could have been has been made out to be something it’s not. I’m not mourning my child. I’m not grieving the loss of some other life. I don’t wish he could be a different kid. What I wish is that his childhood – and I’m extending this to his life – could be easier. I wish I could better help him navigate his world. I wish the world could accept him more easily. I wish I could better handle the stress when trying to get school issues fixed, medical issues solved, and behavior challenges calmed. Yet somehow, saying I feel sad about these things has been turned into my being selfish, not loving my child just the way he is, wishing him fixed or cured, or that autism = bad and typical = good.

I mean none of that. I hope the parents who express grief or sadness or difficulty in accepting their child’s diagnosis mean none of that. My challenges in dealing with the things autism has brought into my life don’t really reflect at all any underlying feelings about C or that autism is a disability vs. a difference or anything of the like. I simply wish that it would all be easier. For all of us.

November 6, 2018 at 3:22 pm Leave a comment

Un-simple Minds

Since we arrived back on the correct (for us) side of the Mississippi five years ago, life has been interesting to say the least. C developed two frightening health conditions almost on top of each other. It’s hard to say which one scared me more.

First, pancreatic insufficiency, which means the body can’t absorb fat, and causes the “failure to thrive” diagnosis that follows C around. There’s five diseases that cause this in children: three are fatal in the first year, and the other two are life altering and cause death far too young. C tested negative for both, and his docs were perplexed. They started him on $3,000 per month digestive enzymes that insurance didn’t cover, of course. We were fortunate that the social worker at the local children’s hospital slipped us samples under the table for the better part of two years. Bless her. C gained weight, grew an astonishing amount, and seemed far healthier than he ever had.

Then he started vomiting. Constantly. He would have an episode that lasted for a week every three weeks on the nose, and he would heave 40 times a day – he would somehow often keep food down but just retch. It was bizarre. We were at the ER so many times the docs and nurses started to recognize us, and C was hospitalized several times in an effort to diagnose him. “Cyclic Vomiting Syndrome” was where they landed. Yes, it is a thing. No, you don’t want to know about it.

We never received great answers, and in the end, C’s GI doc decided it was all in his head and removed all treating medications for CVS. Unfortunately, this occurred at the end of a seven day hospital stay, and the vomiting continued for over a month after that. Needless to say, C’s psychiatrist quickly put him back on the meds, things calmed down, and we never saw that GI doc again – another in the long list of doctors along C’s path that we have dumped.

It was during this time that I realized life with C was never going to be simple. I’m not sure why it took me 15 years of his existence to come to this conclusion, however. Nothing had been easy thus far, but somehow I think in the far recesses of my mind I thought he would outgrow his autism and all that came along with it. Like we were just play acting with a myriad of diagnoses that would all eventually simply just fade away. It seems silly when I look back on those feelings as I am definitely on the other side of them now. Reality, acceptance, giving in, giving up – call it what you will, but I’m there. Kicking and screaming the whole way, but I have arrived. Better late than never.

October 28, 2018 at 2:27 pm 1 comment

A Pain in My…

This past week, I’ve been struck down – and I mean down – with a severe case of shingles. I’m not even telling you where, but imagine the worst possible place one could experience this most painful of diseases and then light it on fire. Yup.

I have had a lot of time to think. And cry. And overthink. And not think at all because it hurts too much. Yet I landed on one thing: things with C used to be more fun. I remembered, reading through the whole of What We Need, how entertaining he was. How charming. Cute. Funny. I also remember worrying that if we didn’t get his elementary school tantrums under control, teenage C would be scary.

I was right.

I do recognize C’s tantrums now are much like his tantrums then, except on a grander scale and with far more serious consequences. We have listened to mental health practitioners and juvenile justice officers tell us that he needs more help before he turns 18, because everything changes then. Police officers won’t sit and calmly try to talk him off the figurative ledge, they’ll just put him in the back of the car and take him away. And if we aren’t with him when something happens? They won’t know he has autism and mental health issues – they’ll just think he’s being aggressive and violent. My greatest fear, if I’m honest, is that he’ll end up in the “system.” Because at some point, he won’t be here, or we won’t be here, and someone won’t understand.

So C is somewhere – a state away, in fact – getting that help. Or at least we hope so. We won’t really know until he comes home, around the time he turns 18. He will have been gone seven months at that time. He is in a place with other kids with ASD, and he sounds like he is thriving when we speak with him. While I can’t speak for Hubs, sending C away was both the hardest and the easiest decision I have ever made.

What I am still waiting to see is if it was the best decision.

 

October 21, 2018 at 7:56 pm 6 comments

A Life Worth Living

I stopped writing here mostly because I felt like C’s story was not mine to tell, he was getting older, and he was online. It felt like a violation of his privacy, and I know I run that risk again now. Yet it is not – it should not be – just about him. So much of his story is intertwined with my own, and mine with his. They are impossible to separate, it seems.

However, that is exactly the problem. My problem. In my quest to help C along his path to become a productive and happy adult, I fell into that cliche of a trap that I never thought would happen to me. I lost myself. Or, rather, I lost my identity. I became nothing but wrapped up in all things C, and it dominated my life. I was isolated, lonely, and miserable. My physical health suffered, my mental health suffered, and my marriage suffered. Of those three things, only Hubs didn’t rock the boat by startling me into paying attention. He understood, bless him. My body and mind did not.

First came cancer. Breast cancer, to be exact. I became that statistic that scares most women to their very core. Cancer forced me to focus on myself, something I had not really done since C was born, if I’m honest. I am all the better for it, despite still living in fear of its return. I went from having one friend with cancer to being surrounded by people with cancer, and while that at times makes me very uncomfortable, it also helps challenge my fear of it.

Second came depression, or rather the acknowledgement of it. After nearly a year of C’s therapist repeatedly pulling me aside after family sessions asking if I would like to talk to someone alone, I took the bait and have not looked back. Whether NC is particularly talented or he just landed in my life at the most opportune moment, I will never know for sure, but I take it for the great gift it has been to me.

So now I walk my own path once again. No longer willing to sacrifice every single thing for C, I am still coming to grips with my own judgement about what kind of mother that makes me. At the end of the day, the conclusion at which I must arrive is that it makes me a mother who is alive, in every possible, wonderful, messy way.

 

 

 

October 14, 2018 at 4:12 pm Leave a comment

In the Weeds

It has been so long since I’ve done this I don’t even know if I know how to do it anymore. Many, many years have passed, and the more things have changed, the more they’ve stayed the same. This journey, while less about C and more about me now, revolves around C – still.

With massive health challenges, painful behavioral challenges, moves, new schools, a whole lot of therapy for everyone, and alternate living situations, we have all grown up, myself included. The sheer volume of events since last I visited here would fill a book. And after spending a 5-hour chunk of time last week reading every single last word of What We Need, I came away with one conclusion: I need to keep writing. I need it for me. I need to record our journey. I need to document this life we share. If that doesn’t answer that question I’m always asking – just what it is we need – I don’t know what does.

So once again, I welcome you here. If you go way, way back, you’ll see and read about C at 8, 9, 10 years old. He’s halfway through 17 now. He’s been hospitalized more times than I can count, both for physical and mental health reasons. The police have been called numerous times. Cancer has visited our house. Relatives have died. In short, life has happened. Life has gone on, albeit somewhat painfully. Still, there is light at the end of our tunnel, I know there is. I hope you will join me in my search for it.

 

October 10, 2018 at 12:08 am 7 comments

Hoop Dreams

     C is playing organized basketball. Those of you that know him in real life are chuckling at the moment. He’s easily a foot shorter than most of his peers, and he looks far more like a 7 year-old 2nd grader than an almost 11 year-old 5th grader. We managed to get him bumped back to the 4th grade team so he might at least have a chance to enjoy himself. Still, he’s by far the most inexperienced and least skilled person on his team. 

     The only reason we agreed to let him play is that this is an organization (Upward Sports – I’m a fan) that is supposed to be a supportive, less-competitive environment. It sounded as good as organized sports can get for C. We were hopeful. Nervous. Worried. All those things plus some.

     I had to sit on my hands during the first game, trying not to overwhelm C with hand signals and over-exuberance that he was actually staying inside the lines. He had it drilled into his head that he had to guard his guy, and guard him he did – both on offense and defense, and complete with constant jumping to make it harder for his opposing player to actually play. He got the ball a few times and tried to make shots, all failing miserably short of his goal. Still, overall, it was good. 

     C’s team has lost every game so far, and I’m happy to say it’s not completely due to C’s skills or lack thereof. This week, however, C’s team played a team that put all the others to shame. C was guarding a kid who was at least twice his weight, and when C stretched his arms up above his head, the boys were just about the same height. No one had much luck getting inside the scoring zone, and by the last period, we were behind 48 to 20, or something equally awful. Then the amazing happened. With only a few minutes left to go, C somehow ended up with the ball and drove right down the middle of the court. It was like the waters parted, and he made the shot. And then he did it again. And again. And again, ultimately scoring 8 points.

     What became clear to me in that moment was that the opposing team’s coach, recognizing that there was this tiny little guy trying his best to connect the ball with the hoop, had told his team not to guard C any longer. It wasn’t done in the spirit of, “This kid is so bad he doesn’t need guarding,” but rather, “This kid is trying so hard, let’s help him be successful.” The crowd – from both teams – went nuts. The refs were grinning ear to ear. C was so excited he jumped up and down like a jumping bean. 

     I’m not sure of that coach’s name, but I hope that he knows he did a really, really good thing that day. Somewhere, somehow, that karma is going to come back and get him, and I’m hard pressed to think of someone who deserves it more.

February 22, 2012 at 5:27 pm 9 comments

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