Why my grass is long…

If there’s one thing I miss about my hometown, it’s this:

It was never hard to get the grass cut.

That probably sounds a little weird.

When I still lived “down home”, I had neighbors and friends who knew me and my story. I had a church family that stepped in to help with things like this. I had uncles and cousins who showed up without asking (or begging).

Life changes. I now live 35 miles and a world away. I left the church because they were teaching my child to hate his grandmother and others. My grandparents are gone, and now there is emotional as well as physical distance between our extended family for reasons that don’t need shared.

When I had a full-time job and wasn’t living with chronic illness, it was of no consequence to keep a lawn guy on retainer.

Now, we’re struggling to make ends meet. My mom and Antonio are bending over backwards and working overtime to pay my bills as well as their own. The lawnmower we have (a small electric push-mower for my nearly-half-acre) died last year and is beyond repair. We can’t afford a new mower, but can’t really afford to put someone on retainer again either. No uncles or friends from church show up in the afternoon with their mowers to help anymore. No one asks if we need help because it looks from the outside like me and my mom are healthy working people who could push a heavy mower on our own. We aren’t friends with the neighbors. Antonio is the “man around here”, but he’s rarely here. Munchkin could probably be taught how to do it now, if we had a working mower.

We’ll get it figured out, I’m sure. We’re scouring Craigslist and Marketplace for used mowers. Once we find one, Mom and I can tag-team to get through it despite our physical challenges. Antonio is helping as much as he can. Something will come along for me job-wise that will make all this easier and give us some breathing room. I do still have a “village”; it’s just different now… little more digital than hands-on.

I used to hate how much everyone in my small hometown was always in my business.

But then again, I never had to worry about the grass getting cut.

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Mixed feelings on World Autism Day

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.

The Art – and Pain – of Compromise

An eloquent man of whom I’m a pretty big fan once said, “No democracy works without compromise.” When he said it, he was referring to American politics – a touchy subject that I’m not going to touch in this post with a 30-foot steel rod. But the idea of democracy, I think, can be applied to other situations in life, as can diplomacy. The life skill of “being diplomatic” was one which my grandmother prided herself on, and one she felt very important to pass on to her children and grandchildren… the art of getting along with others, even when you may not want to. Continue reading

On sadness, social media, and the last few days…

Ed. note: This is a bit long. Bear with me, because I had some things I needed to say, and had to explain circuitously.

It’s been a rough few days.

There are several reasons why. But I’ll get to that in a minute. First I want to talk about social media.

Specifically, using social media when we’re sad.

I’ve read many articles about the psychological effects of social media. How we use it, how positive versus negative information in our feeds affects us, how words and topics and ideas trend. And every single bit of clinical research done, to date, tells us that our Facebook lives are perfect.

Perfect? Surely, that can’t be right…

Continue reading