Category Archives: Autism

Judy Blume is Our Milestone

Autism, Parenting, Serious Stuff,

JudyBlume

I was told recently that my family was one of ‘the lucky ones’, a term thrown around to parents of children with autism who are higher on the spectrum than others.

I’m always conflicted on how I feel about that term. Yeah, I guess we are ‘lucky’ because both boys are much higher on the spectrum than most, but how are we lucky when both children are on the spectrum? They both have high IQ’s, much higher than their peers, but significantly struggle socially—something that while the IQ will get them the places they want to go in life in terms of a career, they need the social skills in order to play well with others once they get there.

Years ago, for Radcliffe, I had to fill out parental assessment forms for the school to do his IEP. That moment my stomach sank when I self scored the test will be forever seared into my memory. In case you don’t ever have to do it, let me just tell you—it sucks. You are holding in your hands a four page document that scores every single inadequacy your child has, the one that you are so proud of, beaming with pride over, all of his issues summed up into a number, tallied by your own words.

We are coming up on his 9th birthday, which means it is time to redo his IEP. The district psychologist called me today to discuss it, and I went on and on and on forever about how proud I am of all of his progress and how much better he is doing. At the end of the conversation, she told me she had sent home a packet of the parental scoring forms that needed to be done again.

Oh.

So, I filled them out. I thought for sure with all of the milestones and progress we had made that the numbers would be so much better, so significantly less that I could pat myself on the back for a job well done after a nine year struggle.

And then I tallied the numbers up. And the numbers are almost the same.

There are so many cuss words I could write about this, so much I could scream about it, so much I could throw myself on the floor and throw a tantrum about, so much I can worry about because I JUST WANT HIM TO BE OKAY AND LIVE THE LIFE HE WANTS TO LIVE WHEN HE GROWS UP FOR GOD’S SAKE.  It is so deflating.

Sometimes, it doesn’t seem like all of those milestones, all of that damn tedious crap you do in order to make them better, doesn’t amount to anything.

But it does.

After I finished scoring the tests, I walked upstairs to tuck the boys in, and read to Radcliffe. This child, who seems like the strangest child I’ve every encountered on many days, is my creative counterpart. Most days, he doesn’t like to read on his own, but we have taken up to me reading him a chapter every night out of a Judy Blume book. He snuggles up to me, underneath his train Pottery Barn blanket that ‘normal’ boys have, and asks me questions and we bond over our love of a story well told.

And then I wonder…what if he wasn’t on the spectrum…what would he be like? What would his brother be like? What would our lives be like? Would they be playing outside with all of the other little boys in our neighborhood? Would they love playing sports like them, throwing the ball in the yard?

The truth is that I don’t want that. Even with the setbacks and heartbreak, I have been given the sons I was meant to have, the ones to stretch me and teach me as much as I teach them and I want them exactly as they are. They are incredible, and while the milestones may be small and minuscule, they are still milestones, and everyone—-even those of us not on the spectrum—is reaching for their next milestone.

So for tonight, my milestone is reading to my freckle-face sweet natured boy who loves Judy Blume as much as I do, and making sure he falls asleep feeling loved. Everything else can wait.

This Is The Payoff

Autism, Parenting

This is 11.

Today, he turns 11, despite my begging with the universe to stop time and keep him small forever.

I wonder some days if I’m the only mother who finds the birthdays of her children bittersweet. He was so excited to wake up and turn 11, and yet I feel the monumental shift below my feet, unable to stop and steady myself against the change of time.

This year was the big shift, the longest leap to date. I looked at him recently…able to hold a conversation, pursuing his passion, figuring out his spot in this God awful world that we live in, and I was taken aback.

This is the payoff, the moment we worked so hard for.

I’ve written and been very open about being terrified about having children prior to having them. How could I, knowing all of the evil in this world, knowingly bring innocence into this world??? Who was I to think that I, the flawed human that I am, could be a worthy mother?

And yet, we have done it, and grown together.

The most emotional lesson that this precious child has taught me, surprisingly, is how to laugh. I always thought I knew laughter, that I laughed when things are funny, but the truth is that I never knew. In retrospect, I think I always wondered how people could genuinely laugh, knowing the weight of evil that surrounded all of us.

The first time I realized that I had never really laughed, tear inducing laughter that I felt in my soul, was a time that he was on the changing table when he was only six weeks old. In the middle of changing his diaper, I leaned over to grab another diaper, and he farted right in my face. I stood there, stunned, as this was a first for me. And then I started laughing and couldn’t stop with tears rolling down my face.

This was the first of many gifts this boy has given me. It was so hard, those first few years. Days of self-induced vomiting tantrums on his part, hours and hours of therapy, diagnostic testing, and begging prayers that he would just grow up to have a life that he loved. This meant clarity in priorities, shutting out external noise, turning the other cheek to nasty stares, unsolicited comments and opinions about how I needed to parent this special boy. It also meant that I had to take a drastic turn in how I viewed his world, sharply adjusting my view to see things through a foreign lens. As hard as it was, this was his gift to me: laughter and the ability to view all experiences from a different point of view.

This process is bittersweet, because there is no other way to package this experience than heartbreak.  I look at him, with swelling pride, and feel as though my heart has shattered into the tiny pieces of ash, and no matter how hard I try to chase after the invisible pieces blowing into the wind, I’ll never be able to quite put it back together again.  Our love and progress is out there, reserving its spot in the universe, setting us up for the next lessons.

Someone once told me that children pick their parents. I have no idea if this is true, but if it is, I am profoundly grateful that he saw something in me that I didn’t yet see in myself: strength and love.

Happy birthday to one of the loves of my life. I am so very proud of you and so thankful that you chose me to be your mother.

3 Things I Want to Tell My Friend Whose Child Was Just Diagnosed with Special Needs

As Seen on Other Websites/Blogs, Autism, Parenting, Serious Stuff,

3 Things I Want to Tell My Friend Whose Child Was Just Diagnosed With Special Needs

My husband and I have two boys, ages 8 and 10, both of whom are on the Autism spectrum. Every time a friend or acquaintance comes to me and tells me their child has been diagnosed with autism or another special need, my heart aches just a little bit more. Because I know things, and the path their new life will take will be rewarding, but exceptionally difficult at the same time. Here are three things I want them to know, things I learned the hard way:

  1. Advocacy is a nice by-product, but it’s not your job to make stupid people understand. Listen, some people are stupid, plain and simple. Either they intend to be mean, because they’re assholes, or they have no intention of understanding because it’s just not a priority to them.

Years ago, right after our oldest was diagnosed, I was in a fast food restaurant and I ran into an old friend of the family. She wanted to know how therapy was going, and was asking questions about the boys and their therapy. I walked into the play area, and a stranger followed behind me. It started off innocently enough:

“I didn’t mean to eavesdrop,” she started, “but I heard you talking to that woman about your kid having autism.”

I smiled. “Yes.”

“I don’t mean to judge, but did you vaccinate your children?”

I should’ve stopped her right there, and told her to shove it, but I was naïve and believe in teaching opportunities.

“We did, yes.”

“You know that’s what caused their autism. Have you researched this? Is your husband OK with you abusing your children? He must not be educated.”

“My husband is a physician, actually, and we made the decision to vaccinate with our pediatrician,” I said, trying to remain calm.

“Oh, well that explains it. Your husband gets paid by the pharmaceutical companies.”

This lunatic had no intention of learning about what autism means to our family. She came in with the sole intention of making me feel bad about my mothering skills. People like this can suck the life out of you, but it is not your job to make them understand what you and your child are going through. It is your job to be your child’s mom.

  1. You are going to lose friends, and at times, you will feel lonely. This is an unfortunate by-product of this life you are embarking on. I’ve yet to know someone with a child with special needs who hasn’t lost a friend or two because of it. Maybe it’s because of their own insecurities. Maybe it holds a mirror up to their imperfect life. Who knows? But the less time you focus on the people who step back and more you focus on the people that step forward, the better off you’ll be.

Even the well-meaning friend will say insensitive things to you. Nothing makes me angrier than people telling me I needed to ‘grieve the child I wanted.’ I always hold back from responding, ‘no, you grieve the child you think I should have.’ We have the children we are supposed to have, regardless of what others may think.

While people will disappoint you with their behavior, the friends that step up and stick by you are the ones you will keep forever, because they get it. These are the golden ones; hold onto them tight.

  1. Everyone can and will Monday morning quarterback your decisions, but they’re not living this life, you are. Acceptance needs to be your new mantra for yourself. You are going to make mistakes. Accept this now, and it will be less painful when you screw up. There is no playbook for your life. Even with research, fabulous therapists, and brilliant doctors, straightforward solutions are usually not the first answer.

You will get angry and frustrated, but that is a waste of your precious time and energy. When our first child was diagnosed, I got into the tub and cried, because I didn’t know what I was up against or what the hell I was doing. When the second child was diagnosed, I crawled back into that tub and cried, because I knew what I was up against. I can’t change the way their brains are wired, just like I can’t change their eye or hair color. It’s what makes them them. While I dragged them to therapy multiple times a week, I used the rest of the time to focus on their gifts and strengths.

What you do need to do is throw all of your expectations out of the window while you drive towards a new destination. This is the life you are living. Embrace it.

© 2015 Audrey Hayworth, as first published on Scary Mommy.