Tag Archives: mixed emotions

Mixed feelings on World Autism Day

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Once again, the time has come where blue bulbs grace front porch lights and enormous monuments around the world are robed in blue light. It’s World Autism Awareness Day… an international movement that has most certainly helped to make people “aware” that this thing called autism exists in our world.

But it has not necessarily brought the understanding that it should have. Despite all the media attention, so many people still fail to understand what the spectrum is, or how people exist as a part of it. There is so little understanding of high-functioning autism, or atypical forms. There is so little understanding of what life is truly like for those whose entire existence are consumed with caring for a person with severe autism. And the nuances of diagnosis – being able to distinguish between Asperger’s, PDD-NOS, or other atypical forms – have been removed from the system, for better or worse.

I mention this because at this juncture in our lives, I am experiencing mixed feelings about what it takes to “be” autistic. What does it take? What does it mean? Can it be “cured”? Does improvement mean it has “gone away”?

My son just turned 13. Last week we had a regular appointment with his psychiatrist – the one who initially made his autism diagnosis over 6 years ago. As we were talking, we discussed some newer evaluations and assessments that we had done. We discussed how he is doing in school. We discussed the behaviors that are posing challenges for him right now.

And Dr. K said that if she met Riley right now, she would probably not place him on the spectrum.

So what does that mean?

Does it mean he was never really autistic?

No.

It means that all of the intervention and therapies that we took advantage of WORKED. All the many hours of ABA and OT and ST and changing schools did exactly what they were meant to do.

Me being “that mom” at IEP meetings, advocating like crazy and never taking no for an answer?
It worked.

Me refusing to listen to nay-sayers like my ex-husband who swear that there is nothing wrong with my son that screaming and punishment can’t fix?
I was right.

But listen… this isn’t about vindicating me. It’s nice, but it’s not what this is about.

What this is about is giving other families hope that intervention can help. What this is about is listening to your gut instinct about what your child needs and fighting for it.

My son still isn’t without challenges. It’s just that as he grows and matures, he has caught up developmentally to the point that sensory issues are not the most pressing issue for him. Now his biggest struggles stem from moderate to severe ADHD, and everything that goes along with it… impulse control, struggle to focus, personal space, and all the rest. We still need our IEP. We are still working hard to keep grades up and teach study habits and find ways to cope with stress and fidgeting and social situations.

All that being said… for some families, there will be a limit to improvement. Some families will – sadly – never be as lucky as we have been. And I call it luck… because while we put in the work to get to this result, life could just as easily have gone a different way for us. I don’t know the reason why some people have severe autism that never improves or only improves to a point with therapy, while others like my son make enough progress to be “removed” from the spectrum. It’s one of life’s great questions… one for which I don’t have answers.

So today, I’m still wearing my blue. I’m wearing blue to honor our journey to get from angry nonverbal toddler to smart funny teenager. I’m wearing blue for all those other families… both for those who are working every day to make progress like my son has, and for those families who are working every day just to get through the day. For those who will live with this incredible, beautiful, and frustrating lifestyle for the rest of their lives.

Is my son “cured”?

I honestly don’t know how to answer that.

He is what he is, and who he is. Maybe I don’t need an answer to that question.

Am I afraid of what others will think?

Yes.

Will others think that I’ve been making all this up, just like my son’s dad has sworn all along? Maybe. But I hope they won’t. I can only speak what I know to be true.

I am not a doctor or a therapist… I just happen to know a lot of really good ones, and fought to get access to them for my child to get past his own personal hurdles. I don’t know if the label you put on it really matters. My child needed help, and I got it for him. It wasn’t easy, it wasn’t cheap, and it meant me taking on the mountain of emotional work that is advocating for one’s child in a world that doesn’t really quite understand him… a world that is built for and run by neurotypical people.

But I’d do it all again. Just like every other caregiver out there who loves someone on the spectrum. We just do what we can do. We get through each day, and take advantage of opportunities for help and progress where we can find them. At the end of the day, it doesn’t matter what we call it, or where on the spectrum we live. Anyone who loves an exceptional or 2e person is just doing what we can to give them the best life possible, even if that looks different for every family.

Because regardless of label or diagnosis… I love this life, and my kiddo – struggles and all… and I wouldn’t trade either for the world.

Thoughts from the wee hours…

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Living with a dog with a small bladder is like having a newborn again. You sleep in short chunks with multiple mid-night wakings. After having just climbed back in bed after yet another late night trip downstairs with Molly, I have so many random thoughts floating around…

• Note to self: I sleep better if I claim my half of the bed from an Equatorial perspective (top half) rather than a meridian (right half) perspective. At least with the dogs… not sure about the pilot. 😆 These days when the Munchkin is gone to his dad’s, I end up with the Pug and the Bulldog in bed with me, while the lab is in the dog bed in the floor next to me. Did I mention they snore? They all snore…

• I am so behind on writing and homework right now it’s not funny… and I’m having so much trouble forcing myself to actually work. But the end of semester looms… and panic is starting to become a daily feeling.

• I miss my pilot. The worst part of this time in our airline life is not knowing when I’ll see him again. He’s working so hard to get through this challenging point in his career… and I’m so proud of him. But it’s hard. For both of us.

• My mother is so freaking amazing… she cleaned and reorganized my office this weekend and I can actually work at my desk now.

• There’s something really special, after having been blessed with a best friend for 22 years, to having a relationship with her daughter.

• The money for the semester never seems to last through the whole semester. I think one thing I miss about working, besides having a social life, is just knowing there’s a paycheck coming.

• It’s only 38 days until Rocky Mountain Christmas vacation! Hooray! I’m so looking forward to Christmas with both parents and my sister. It will be good to be away from Indiana over the holiday, so close on the heels of losing my grandpa.

• I don’t like having a friend living with chronic pain… but I do appreciate having someone who understands where I live who I can text at any hour to commiserate. My sweet friend in Georgia is dealing with a mess of back issues. I hate hearing how she hurts, how the pain is getting to her emotionally. But it is so comforting to be able to turn to someone who gets what it’s like to live this illness life, who knows how it feels to feel like a burden to others, who really gets how frustrating this can be and how much you just want to go back to “normal.”

• I had grand intentions on doing the “30 days of Thanks” thing this year… but lately I’m struggling to find the good. Not that I’m not very blessed and incredibly “wealthy” by so many standards. I have a home, a family, a beautiful child, an education, food to eat… but as I fight my own body every day, sometimes just to get out of bed, you get trapped in this internal place where it’s very hard to get outside oneself and recognize all that is there.

• Hypocortisolism is no joke. At a time when my pain is relatively well-managed, nothing is more infuriating than having to rest (or nap) after just a few hours… and on the days I force myself to get up and go all day, to then have to spend the entire next day (or more) recovering. I feel like I’m sleeping my life away these days, and I hate it. Thank God for my momma, who is helping me keep it together for my Munchkin. I’ll be glad when my new treatment starts working, in the hope that I can stay awake for more than a few hours at a time and maybe start to feel human again.

With that, I think I’ll try to catch a couple more hours sleep before class… hopefully…

Random Saturday morning musings…

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Well, technically, it is afternoon now. But I was up late, the Munchkin isn’t home, and I didn’t have any plans today. So I slept in, and I’ve been trying to get motivated to get some things done, but I’m distracted. Figured I’d jot down some quick thoughts to try to clear my head…

  • I know I said I was going to take a break from dating. I meant it. But just around the time I said it, I met someone online. A pilot. A cute one. (Who also speaks fluent French… Tais-toi, mon cœur!) But we were both in very transitional places in life back then, so we said we’d just chat and be friends. I didn’t give it much credence.But then we kept talking. And started to get to know each other. This has been going on for 3 months now. Last night, we spoke on the phone for the first time… and ended up talking for almost 3 hours.

    I’m not really sure what’s going on with that. He seems like a great guy, and we seem to have connected in a fairly uncommon way. But there are obstacles and some very large unknowns. And as of yesterday, his course seems to have changed and is now even more uncertain. So I don’t know what is going to happen or how to feel about it. On the one hand, I have always been one that is open to the possibility of the improbable. On the other, the cold of reality has thrown ice water on my rhapsodic imagination more times than I care to admit. Do I dare to hope that one innocent conversation be life-altering?

  • About a week ago, one of my very best friends did something that I never would have imagined possible: He chickened out.

    He took the coward’s way out of telling me something to my face. We were together, in person, for the entire afternoon on Sunday, and yet he chose to tell my by text message on Monday. And the thing is, it’s GOOD NEWS for him. A good thing. There wasn’t any reason for him to be afraid to tell me in person. I feel betrayed. Lied to. I feel like I’ve been shown – not just told, but SHOWN through actions – where I rank in his opinion. And Grandma always said, actions speak louder than words. And the thing is, he doesn’t even get it. He thinks that the fact that I was upset is about my feelings about something else entirely. And I haven’t tried to explain because I feel like he wouldn’t listen anyway, and I refuse to take his announcement and make it about me.
    But I feel so heartbroken. No one understands the time and the love I have invested in him. All the middle-of-the-night conversations spent convincing him that his life was worthwhile. All the long emails and IMs talking him through the dark moments when post-Afghanistan PTSD and depression threatened to overcome him. All the time spent worrying about him. All the groceries bought and meals cooked and miles on my car spent driving an hour to his place just to check on him, or spend the weekend, so he wouldn’t be alone while he struggled through a year of unemployment. And I’ve never gotten what I ever felt was a sincere thank you. I’ve heard “Well, you didn’t have to do that,” or an off-handed “I appreciate it,”… and I don’t want to seem ungrateful, but it feels like so very little comparatively. But maybe that’s on me. Maybe the fact that I feel things so deeply puts an expectation on others. Maybe he isn’t able to express his emotion in the way I need him to. I’m not sure. All I know is that right now, I still hurt, and I feel cast aside.

  • Yesterday was my last day of classes for this semester. I have to say, I’m so glad… but it feels sort of unresolved. I still have finals next week, but I don’t think that’s it. I think it has more to do with me feeling like I never hit my groove this semester, and so all the plans I had to get my grades up even more, to do all this work to catch up, my plans for studying, just didn’t play out the way I wanted. I will pass (without taking any Ws), but it is so hard for my perfectionist side to accept what I feel could have been better. But I also know there’s not much I could have done to change the outcome.
  • There’s this thing going on. It’s not good. And I can’t talk about it publicly, because it’s not my story to tell. But it is a family thing, and it’s affecting a lot of people around me. There is a lot of fear and sadness. Maybe still some hope, but the outcome and decisions aren’t up to any of us. It’s a big weight, and I’m worried.
  • This fibro and CFS is driving me nuts. Some days I feel good. I feel like I’ve reached a much better level physically – I’m always some level of stiff/sore, but with meds and new glasses, a lot of the bigger issues have been resolved. But this last week has been rough. I couldn’t sleep last Sunday night, and it threw my whole week off. And it’s frustrating. I feel like it has stolen some of my spontaneity from me. I feel like I’m torn between taking care of myself and coming across as an invalid. I’m not an invalid. I need to modify and adjust, and I’m working on trying to get back some of my upper body strength, but I’m still taking care of myself. But it’s hard, and I never really understood how people feel when they live with an invisible illness like this. I suddenly get the shame and embarrassment. I don’t know how to talk to anyone about it. What do you tell someone new? How does it color their perception of you? Besides my pilot, I made another new friend at school this week… a great gal from my French class who may just be my kindred spirit (despite being 14 years my younger)… but I fear telling her. I fear telling anyone. But then I feel like I’m lying, and I detest lying. I don’t know what to do.
  • Munchkin is gone this weekend. With SD. I wish he weren’t. Not that I don’t want him to have a dad; I do. But I want him to feel safe and happy, and my mother’s intuition is telling me something isn’t right. I’m trying to figure out a way to make this better, but courts and evidence and psychologists and emotions are all complicated, expensive, and time-consuming. Still, the crestfallen look on my child’s face when I have to tell him again that he has to go for the weekend despite his tears and pleading to stay home…. it breaks my heart.
  • I had a bit of a lull in the massive purge I started on the house. I think that the supercharged all-in-one-weekend bedroom makeover for the Munchkin’s birthday in March sort of wiped me out. Fortunately, my mom is a rockstar. She’s sort of kept the embers burning in the interim, and let me delegate several things to a “Mom List” this week. Today, even though I have a severe itch to go buy paint and start ridding the living room of the drab sage walls and finally start the transformation to my “vintage map/world exploration”-themed decor, I think I’m going to try to force myself to focus on the rest of the organization for the office and on getting the old broken wine rack out to the garage. If I can do that this weekend, then maybe I can reward myself with some fresh sunny yellow paint next weekend.

That said… I do feel better now. (Never doubt the power of therapeutic writing.) I’m going to crank up Pandora and go tackle the assembly of my new wine cabinet.

Parlez-vous plus tard, mes amis! Joyeux Samedi!