Posts filed under ‘autism’

Trouble in the Water

C’s issues have almost always manifested at home instead of anywhere else, really. On one hand, I have been grateful for that because teachers, babysitters, habilitation workers have all loved him. I remember the first time he got in trouble in preschool -everyone was so excited that he finally did something they deemed normal.

On the other hand, the fact that his issues exist at home is cause for concern about the family dynamic. I have always known we were doing *something* wrong that was making C’s behavior worse, more explosive, and more troublesome. That may have been true to some extent in that we, by reacting to his behaviors, reinforced them. We have stopped that for the most part, yet the behaviors still continued. Cue the sigh of relief that it’s not all our fault.

Yet one place C has done remarkably well is in treatment facilities. He has been in the acute care hospital four times in the last two years, and he is always discharged with comments like, “We see no real issues, and he has behaved perfectly well during his time here.” It got to the point where, on his third “episode,” we waited in the ER for nearly 24 hours before the acute care hospital would admit him, despite there being no other option for placement. They attributed his behaviors to behavior problems instead of mental health problems. I could see where they were going with this, but when my kid is wielding a knife threatening to harm himself, I don’t really care what’s at the root of the behavior, I just want him to get help.

His time at his residential treatment facility has been no different. We’ve already had one of his therapists express disbelief at him being there at all. We are used to that, although I still find it annoying, as if there is some flaw in the therapist that he can’t see past the happy, agreeable front C puts on. Therapist NC here at home promised us we would get a call at some point saying C was in trouble and that it would indicate he had finally settled in and the real work could begin.

The months had gone by and I had resigned myself to this never happening during his entire stay, because let’s face it, C is C and he does things in his own sweet time in his own sweet way, or not at all. But he called us the other night, in enough trouble that if he gets one more strike, he won’t be able to leave campus during the day with us at Christmas, and we’ll have to visit with him in the visiting room only. Yikes.

The relative amount of relief I experienced about this was palpable. I texted Therapist NC about this development, knowing he would be one of only a few people who would understand how ridiculously happy – yes, happy – this made me. Because I know that this means C is comfortable. He is comfortable enough to show himself and his behaviors. And that means he can finally get some help.

 

December 10, 2018 at 6:45 pm 2 comments

Holding Pattern

My goal at this point is to kind of just get through the holidays. Before C was born, I was all about the holidays. Starting with a pumpkin carving party for Halloween-to a massive feast on Thanksgiving-to decorating everything that moved for Christmas, I lived for October 1 to January 1. But this year, I’m just not in the mood. I am not in a bad mood, but I have realized that I would rather just “be” than pretend as though things are normal when they are most definitely not.

Like so much with C, things slowly started to change after his birth, and our holidays changed just like everything else. C was terrified of Halloween. Literally terrified. Pumpkin faces and costumes freaked him out, even the happy ones. In later years, he enjoyed trick or treating (even though he didn’t like candy) just to bang on people’s doors and get something from them. But slowly over time, my Halloween decorations were put away, and eventually just given away.

Thanksgiving was even more of a non-event with C because he simply didn’t eat. I have talked about his sensory issues with food many a time here, and they really impacted family gatherings. It took years for him to be able to eat around other people, and he still struggles with it to this day. His feeding therapist always told us eating was the second most difficult thing for the human body to do next to sex. Eating involves so many sensations that are overpowering for sensory challenged kiddos. True that, we have found.

Christmas? It was a bit better, especially given C firmly believed in Santa until well into middle school, which I loved. Yet he was all about the material gifts, which I didn’t love so much. When a kid starts saying, “Just give me cash, it’s easier,” it sort of takes the meaning and fun out of it. He enjoyed the spirit of giving at first, but even that faded over time.

Still, preserving traditions was very important to me, and I kind of mourned the lack of them in our home. I grew up with very entrenched holiday traditions, and I envisioned my own family being that way as well. Like so many other things, that has not happened for us, despite early efforts to make it so. I eventually kind of gave up, and felt somewhat resentful for it.

This year? I am oddly grateful for a newfound awareness. With C away and everything feeling so strange, I have realized it is not about the pumpkins, the feast, or the tree. I am not opposed to those things, but they just don’t mean as much to me anymore. I was caught up – not in the stuff as much as in doing the stuff. Right now? I’m pretty content with my 24/7 Christmas carols and reveling in the recent snow. Watching the birds at the feeder, smelling the scented pine cones I picked up at the store, and peppermint hot chocolate are filling my soul more than enough this year.

December 2, 2018 at 6:00 pm 2 comments

The Forest for the Trees

I have always been fascinated with sky through trees. A quick scroll through my camera shows more pictures like the one below than anything else. C used to be the same. I remember the tree outside his toddler bedroom window and the hours he spent staring at the leaves moving in the breeze, turning, falling, and then growing once again.

I think I like this view because it calms my thoughts. It seems impossible to be anything but mindful when looking at a scene like this one. My brain can process things in the background while I am transfixed by blue through gold.

As we get ready to head home tomorrow after our visit with C, I expect my heart and head will continue to filter through the ups and downs of this trip in the coming days. It has been more difficult than I anticipated, and I do wonder what is next for this little family of ours when C comes home.

By the time that moment comes, however, seasons will be changing once again, and the view and perspective will – hopefully – be different.

November 25, 2018 at 6:07 pm Leave a comment

Woke

I read the message of a dear childhood friend with surprise. She talked about the impact of the various health crises of her special needs child on her other children, and how she and her husband had not really tackled that impact well in the midst of everything going on. She is kind of a pillar of amazing-ness to me; she has handled their child’s medical issues with a strength and grace I strive to emulate.

I quickly responded in support that we are all doing our best in any given moment, and I believe that of her completely. I then gently tried to extend that sentiment to myself to see how it felt. I found myself believing it, maybe for the first time ever.

I think I’ve spent 17 years judging – and often judging harshly – myself and how I have handled things with C. I am a fixer at heart, a researcher by trade, and I’m always convinced there is an answer just around the corner. I keep searching for it, because I know if I find it everything will be better.

But I give. I quit. I’m done. No more of that. Whether it took distance from C to realize it, or if I am just waking up, I don’t know. It brings me to tears to think about it – holy cow, I have been hard on myself. From day one, if I’m honest. Not good enough, not doing enough, not doing the right thing, not giving enough, not loving enough. Yet the reality is I have done everything, given everything, and loved so hard it sort of broke me.

I am always doing my best. And I can always do better. Therapist NC wrote this statement on a whiteboard at our very first meeting with him. How I hated that sentiment – and many others – during those early days of therapy. I couldn’t live with dichotomies like that one. I thought it excused things. Gave reasons for C to be an ass and then say he was doing his best in the very next breath (which he did more than once). But perhaps what it really did was bring to light my own deeply-held belief that I was never, ever at my best. Doing better was something I should be doing more of, even though I felt like I was constantly working at it. I had the second part of that therapy statement down, perhaps too much so.

It’s exhausting living with the belief you are never good enough. I am now trying to give myself a little bit of a pass on the “I can always do better” part. Even though I’m not doing exactly as instructed by Therapist Saying #1, I think it’s an okay way for me to work it. Putting down that heavy weight has been a great relief. And in this week of Thanksgiving, I find myself grateful to have finally reached this point of believing I am doing – and have done – my best.

November 18, 2018 at 3:36 pm 2 comments

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

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