Monthly Archives: November 2014

A Big Thank You to You– Yes, You.

It’s that time of year– a time of reflection, remembrance, sentimental moments, and hopefully family and friends. It’s a busy time of year, and so much can be lost in the hustle and bustle. Hopefully, we find moments to steal away, to capture in our heart, and lock in our memory. As I’m contemplating the season of thanks and giving, I feel compelled to send a letter of thanks to you—to all of you.

Thank you for following along our journey, for your words of encouragement, your questions, answers, laughs, and your continual support. Each of one you have given me community, a place to share, a sounding board, have shown so much love for my son, and to me.

I hope along the way, we have offered some of the same to you. Thank you for being here, for ‘getting’ us, and sharing your experiences here. It’s been an amazing gift.

I hope you find time this season to slow down, capture the sweet moments, make some lovely memories, and to be with the people you love.

 

X,

Bec

 

Advertisements

Forever Thankful

It’s that time of year– a time of reflection, remembrance, sentimental moments, and hopefully family and friends. It’s a busy time of year, and so much can be lost in the hustle and bustle. Hopefully, we find moments to steal away, to capture in our heart, and lock in our memory.

As I was contemplating the season of thanks and giving, I was reminded of so many people who have touched my life, my son’s life—who have impacted us and gone farther with us, for us, than most. There are so many people who’ve come into our lives along our journey through autism– doctors, teachers, therapists, and support staff. Each person touching our life in a different way, adding to our experience, guiding us, adjusting our learning curve, and offering support. There have been many wonderful people, and it would be hard to name them all. But, I attempted to make a list. As I was making an unedited list, adding name after name, I noticed one person’s name appeared multiple times. I suppose it was because as my mind rolled through our journey her name kept reappearing. I felt compelled to share her with you.

It’s taken me a long time to write this, to digest the emotions, to find the words. Having children is a blessing—a challenging, life changing blessing. Having my son, Liam, has been the most intense, amazing journey I have ever been on, and trust me, I’ve been on some awesome trips. He has inspired me in ways I didn’t know another human being could. Like every other parent, the love I have for my son is my driving force. And, like most parents who seek out professionals to help their children, I look for providers who are as passionate and dedicated to their work and clients as I am to my son. We have been blessed with some amazing support along the way.

Last year, I was in a battle for services for my son. He needed a specific kind of therapy, and his school district would not cover the expense. Our private insurance denied coverage. It seemed like there were road blocks and barriers at every turn. The fight for services, coupled with daily life, took a huge mental and emotional toll on me. It’s difficult to know your child needs something, and not be able to provide it. It was a dark time, and I wasn’t always sure how things would turn out. I kept pushing. That’s not a pat on my back. I kept pushing because one person continued to make it possible—my son’s BCBA and owner of his therapy center.

Even now, I’m not sure she realizes the impact she has had on my son, my family, on me. I’m not sure I’ll be able to fit it all in one entry. Her passion and abilities as a therapist gave Liam a skill set he did not have before. For the first time ever, he was happy to go to school, happy to engage, and we saw a decrease in behaviors which had limited him for so long. As a mom, it’s hard to see your child struggle in almost every aspect of life. The flip of that is it’s so much sweeter and life changing when you see the same child cross hurdles, and accomplish things he had struggled with for so long. It wouldn’t have happened without Alicia. I’m sure of it. I will forever be thankful.

Not only was she his therapist, she owned the clinic. Liam needed a placement I really could not afford. I was determined to do it, but I didn’t know how. She worked with us, crunching numbers, finding ways to fund his program. There were days I thought, “He’s not going to be able to keep going. We owe too much. She’s a small business. She can’t afford to let us owe this amount of money.” (At one point, thousands, we owed thousands.) I worried about it constantly. There were many sleepless nights and days of fog worrying about paying his therapy bills. I waited for the phone call to tell me he was going to half a day–the call that would end his services. It was a call that never came. She allowed me to pay as much as I could as often as I could, and his services weren’t interrupted. I will be forever thankful.

As if teaching Liam and allowing me a more than generous payment plan weren’t enough, last winter, she read a blog I had written about a failed birthday party. As many of us know, birthday parties for our kids can be a challenge. She offered to help me give Liam a birthday party. I won’t ever forget that. I was pushing a grocery cart, talking to her on the phone, when she said, “I want to help you give Liam a birthday party.” I cried. This person, a therapist, who I had known for such a short time, offered to help me give my boy a birthday party. It was priceless. I’ve yet to write about it, but fully intend too. I’ll save the details. Just know, a group of parents and kids were surrounded by support, the staff from the party location, behavioral therapist, and had a wonderful time—all because of her willingness to help. Another reason to be forever thankful…

When I was looking for a house, she gave me leads. When I was looking for a job, she helped me find one. I could talk all day about what this woman has done for my family, for me. But, for now, I’ll just say thank you, Alicia.

“Thank you for being a smiling face, a warm heart, strength, and forgiveness. Thank you for the impact you’ve had on my son, on my family, on me. You have been an inspiration to me on so many occasions. Honestly, I’m not sure thank you is enough, that it captures what I want to say, or has enough impact. You will always have my gratitude, a place in my heart, and be a memorable part of our autism journey. Thank you for all you have done and continue to do.”

X,

Bec and Liam

 

To all of you, during this season of thanks, I hope you have people in your life who have impacted you the way Alicia has impacted us. To the providers, teachers, therapists, doctors, and everyone else supporting families—thank you. I hope you know what your dedication and commitment means to the families you work with. Many times, you’re what helps us get through a tough day, and we will be forever thankful.

 

 

 

Say This: Two Moms Chatting About “Normal”

If you hang around the autism community for any length of time, you’re bound to hear plenty of phrases you’re NOT supposed to say to autism parents. Which begs the question, what do you say? What should you say?

For the longest time, I didn’t have an answer. I didn’t know what I wanted people to say to me when I said, “He has autism.” I didn’t want to hear platitudes. Why do you think I want to be consoled? I don’t. Acknowledged? Yeah, maybe it would be nice to have the statement acknowledged in some way, but what way? Today, it happened. I said, “He has autism,” and she said, “Oh, I’m kind of ignorant to autism. What is that like?”

I was so blown away by her genuine interest, I didn’t have an immediate answer. I smiled nervously and exhaled, “It’s parenting.” I waited a moment, and said, “Every child has their unique set of characteristics and traits. He does too. If you’re asking what autism is…well, it’s a neurological disorder. He’s wired differently. His senses, perception, understanding of the world around him, it’s very different from the average person. What’s it like? It’s a rollercoaster,” I laughed. “But, honestly, it feels very normal to me, now. Of course, that wasn’t always true. It’s amazing what can become your normal…”

“Oh, that’s true. I feel like I was born to be a taxi cab driver. I’m here to cheer from the sidelines. I go to sleep at night hoping their childhood isn’t a smear of a memory– that I’m not messing them up in some monumental fashion… And, if I am, I probably won’t know about it until their twenties. At which time, a therapist will send them to tell me what a piss poor mother I was for all those years,” she laughed. “Is there a cure for autism?”

I flashed an uncontrollable smile, knowing the impact that simple question continues to have on the autism community. “No, there are no known cures for autism. There are a lot of therapies and interventions, which can help people with autism live more productive lives.”

I stood there, soaking up the moment, realizing how unique and comforting it was to find some common ground with a mother whose world (before this moment) appeared drastically different from mine. I found myself holding my breath. It was kind of like being picked first at recess. The excitement of feeling important, included, and part of something. I realized while I was thinking all these things, I was still sort of holding my breath. Maybe, she thought I was thinking of her cure question. She had an inquisitive look, waiting for me to explain further. “It’s so funny you mentioned your endless shuttling. I feel the same. Except, instead of sporting events or conventional activities, I’m shuttling him to therapies. Still cheering, still wondering to what extent I’m screwing up. I console myself with cookies.” And, we laughed some more.

She continued to ask questions, and I inquired about her children. I was awestruck. For a few moments, a mom of typical children and a mom on the spectrum with an autistic son shared a gift, a moment, something similar, and it was priceless to me. To her, it may have been just another conversation, another few minutes of mommy talk, but to me it was a rare occasion, a moment to remember—it was something worth writing about. We talked autism, neurotypical, meltdowns, tantrums, perseveration, common core, exhaustion, and ended it with talk of caffeine addiction. It felt pretty normal, genuine, and she never apologized. She didn’t have sadness for me or my child in her voice. She didn’t give a knowing nod of pity or sympathy. We chatted– two moms waiting in line for coffee. It occurred to me after I left– say this. This is what I want when I tell someone we have autism. Say this.