To the Therapist Who Threw My Son a Birthday Party

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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 lives in a different way, adding to our experience, guiding us, adjusting our learning curve and offering support. It would be hard to name all these wonderful people. But I attempted to make a list. And as I was 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’ve ever been on, and trust me, I’ve been on some awesome trips. He’s 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 board certified behavior analyst and owner of his therapy center. 

Even now, I’m not sure she realizes the impact she’s had on my son, my family and 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 didn’t 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’d struggled with for so long. It wouldn’t have happened without Alicia. I’m sure of it. I will forever be thankful.

She wasn’t just his therapist. She owned the clinic. Liam needed a placement I couldn’t 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. 

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Me and Liam

As if teaching Liam and allowing me a more than generous payment plan weren’t enough, last winter, she read a blog I’d 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’d 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 and 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.

For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected].

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The Holiday E-mail All Parents of Children With Special Needs Should Read

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Ah, the holidays…

They always end up being so hectic and stressful. Add a child with autism in the mix and things become even more chaotic. I wrote to our therapist about my daughter, Lila, and Christmas. The truth is, the gifts mean nothing to Lila. She couldn’t care less. Know what she wants for Christmas? Her balloons and ping pong balls and for Mommy and Daddy to be at home playing with her.

We all have these preconceived ideas about the holidays and what they should look like. Baking cookies with our children, watching their eyes light up while we explain Santa and the reindeer to them, listening to Christmas music, decorating the tree together, having a picture taken with Santa, looking at Christmas lights, visiting family, all while our perfectly wrapped presents sit under the tree. And we don’t stress – we just enjoy the holiday season, right?

Is that really how it is for anyone? I have my doubts. You know… we’ve already re-arranged our entire lives for Lila and her autism, but for whatever reason, it never occurred to me we could flip the script on the holidays as well. Our SoonerStart therapist, Janet, sent me the following in an e-mail. I genuinely believe it’s something all parents of children with special needs should hear, so I wanted to share it with you:

There are so many social norms and expectations surrounding the holidays. It’s like there’s a big book of items that are stereotypical and everyone feels if they aren’t ticking off a certain number of them, they aren’t doing it right. So many holiday things are hard for people with ASD. Different foods/cooking smells, longer travel times to infrequently visited homes with unfamiliar people and a different schedule, things you can’t touch, sitting on Santa’s lap, opening gifts, more shopping trips, all the forced social interactions, I could go on and on…

This is a great opportunity to ditch all the “normal” expectations and start to develop BETTER, new, fun ways for you all to do the holiday thing. Free yourself from all that garbage and follow her lead. You can celebrate in an AUTHENTIC and true way to your family. Your special twist on things will mean so much more to her than ANY gift. It’s kind of exciting and freeing isn’t it – to get to rewrite the book and tick your own things off? You are going to have a much better time than a lot of “normal” families. Makes you almost feel sorry for them… 🙂

So, please take that advice and do as you wish with it. I hope it helps you and your families like it has helped me. Our holidays won’t ever be what typical families would consider normal, but maybe – just maybe — they will be even better. Happy Holidays and much love to all of you and your beautiful, different little families!

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This post originally appeared on Dancing With Autism.

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I Would Have Made an Awesome Soccer Mom

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I had a few hours of free time on Sunday, and because I lead a very sexy life, I used the time to clean out my pantry. It’s a little room off my kitchen that has, over the last six years since my son came home, transitioned from a cute, chandeliered office/pantry to an enter-at-your-own-risk-I-can’t-be-responsible-for-what-falls-on-your-head room. It was time.

Photos, party supplies, glue guns, three coffee makers, expired cupcake mix – I sorted and filed and moved and tossed. I was on the last shelf when I yanked down a big, big box marked “ice cream social.” Huh? Two things: one, why do I have a huge box marked “ice cream social”? And two, I don’t even remember being the person who had time to appropriately label stuff in my pantry.

I opened the box, and inside was everything you need for the coolest kid party ever. There was a shake maker, snow-cone machine, cotton candy spinner and a cake pop baker. Long-handled spoons, ice cream bowls and a bright table cloth with ice cream cones printed on it. At the bottom of this box — the cherry on this surprise sundae — was a lime green pedestal that held six small bowls for ice cream toppings. Sitting in the middle of the spinning pedestal was a ceramic cupcake with a removable lid for hot fudge or caramel or strawberry sauce. It was summer and Pinterest and laughing children in one clever serving piece. It was darling.

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I wanted to throw the darling cupcake as hard as I could against the wall.

Instead, I sat down next to the box called “ice cream social” and cried.

I remember this stuff. I bid on it at a silent auction years ago, back when ice cream socials and impromptu play dates and birthday parties had starring roles in my parenting plan. Back before I knew that my son’s meltdowns were not a phase and back when I thought he played by himself because he was shy. Back before I had any idea that I would not be a soccer mom but a special needs mom.

What I have here is a box full of plans for a kid I don’t have. Some days, like today, it makes me sad.

I was crying for my son, but I’ll admit I was also crying for me. Instead of six different ice cream toppings always on hand for my son’s friends, I have an endless supply of pens for his therapists. Instead of being the house that everyone comes to, we are the people that are never home. Instead of bike rides, we have speech therapy; instead of swim parties, we go to OT.

Do I begrudge this? Not ever. But is this what I planned? No. Every once in a while, not very often, but every once in a while, I give myself permission to grieve for the life I don’t have, to think about the mom I don’t get to be.

I wrapped up the cupcake and put it back in the box. One day. Maybe. In the meantime, the sweetest boy in the world was on his way home. As moms go, I think I’m doing OK. Ice cream socials are fun, but my son needs a mom with a backbone, some fight and a strong voice. I’ve got that.

But just so you know, I would have made an awesome soccer mom.

Sincerely,
Becca

This post originally appeared on Sincerely, Becca.

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When My Daughter Graduates High School, This Is (Part of) the Speech I’ll Make

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unnamed (22) When I was much younger, I used to practice my Oscar speech. You know the one: “I’d like to thank the Academy…” 

These days I dream about a much different speech.

My husband and I often talk about how cool it would be to throw a party when our daughter graduates from high school. We’d invite every single therapist, teacher, aide, doctor, friend, relative and anyone else who has helped her (and us) along the way. Annabel has Dup15q syndrome, which often comes with a variety of developmental disabilities and challenges including autism, seizures, hypotonia as well as anxiety and sensory disorders.

She’s only in second grade, mind you, so we’re going to have to rent out a stadium. I’ve already started preparing my speech.

Here’s what I have so far:

Thank you to Annabel’s first therapist, who set the tone for all her future therapies. You had incredible energy and a no BS attitude that proved to us Annabel could be pushed through her stubborn streak.

Thank you to Annabel’s preschool teachers who greeted her with open arms and made school a far less scary place for Mom and Dad.

Thank you to my best friend who called me every single day for at least two weeks after we got Annabel’s diagnosis, just to check in and let me vent or cry or not talk about it at all.

Thank you to my brother for teaching Annabel the history of rock and roll.

Thank you to the girl from Annabel’s school I ran into last summer. You asked how Annabel was doing, and it melted my heart because Annabel just isn’t on most of her peers’ radars.

Thank you to Annabel’s principal who wears the best ties and lets Annabel carefully study them every day.

Thank you to our neurologist who confirmed what we knew — that Annabel is smart and more than capable of learning how to change her own behavior.

Thank you to every occupational, physical and speech therapist, who despite being kicked and slapped and bitten, sat in meetings and told us how much they adore our girl, how they love working with her and how much they’ve learned from her.

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Thank you to every parent who has ever seen me struggling with Annabel when she’s having a hard day and given me a smile or a nod or an “I get it” look.

Thank you to our family for supporting us wholeheartedly and unconditionally.

Thank you to Annabel’s soccer buddy who told me in her sweet teenager way that she admired how much I love my girl. It made my night.

Thank you to Annabel’s one-on-one aide who, for the last four years, has guided Annabel through the ins-and-outs and ups-and-downs of school, who’s guided me through classroom dynamics and school politics, who’s loved Annabel like her own. We will be forever grateful to you.

Thank you to my husband, who kept his promise to me the night of Annabel’s diagnosis — that we were going to do something good with it.

Thank you to Annabel’s brothers, who have shown patience, compassion and understanding beyond their years.

Thank you to Annabel for teaching us how to be the strongest, most patient, most badass parents we can be.

There are and will be countless others, but this is a good start.

It will be an enormous party.

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Why I Believe Only Special People Parent Special Needs Children

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Recently, a longtime friend reached out to me to let me know she was expecting a Sensory Processing Disorder diagnosis for her kiddo. She was feeling all of the things you feel when you are told your child is different, and she was wondering if I had any suggestions or helpful tips about how to begin their journey.

We chatted for a while, and it turned out she was already aware of several things that would be helpful for her child. (I wasn’t surprised; she’d always been a smart, tough go-getter.) So I put in my two cents, wished her luck and asked her to keep me posted.

The conversation stayed on my mind for the remainder of the day. I thought of the beginning of our journey. In my mind, I went over all the things we’d learned, doctors we’d seen, therapy we’d done, changes we’d made in our lives and lifestyles… and it was the first time I’d stepped away and looked at it from a distance, rather than just feeling it from the epicenter. It was the first time I’d realized just how far we have come.

I’m proud of us — not just of Lucy, who has done an enormous amount of work, but of our entire family. Each of us has had to sacrifice and grow and love each other better than we might have if we hadn’t been on this crazy ride together. It was one of those shifts in perspective that all of a sudden illuminates a reality you hadn’t considered before. It was a gift.

Then a few weeks ago I read an essay by the mother of a child with special needs. The essay described her irritation when people told her that, “God only gives special kids to special people.”  She knew those folks were saying it with only the best of intentions, but believes that kids with special needs can be born to anyone, and some of those people go on to do horrible things to their children. I enjoyed the essay and the ultimate message, but something bothered me about it, and I couldn’t put my finger on exactly what it was.  I thought it over for several days, and then I had another lightbulb moment.

Because I’d said something along the lines of, “God only gives special kids to special people” to my friend in our conversation when she’d reached out to me days before. Was I a jerk? I am the parent of a child with special needs; I should know these things. Am I bothering other parents when I say that? It’d never bothered me when someone said similar words — but why not?

I thought again of our beginning — when we were searching for answers to questions we didn’t even know how to ask, before we had our diagnoses and we knew things were off. I thought about after — getting our diagnoses and facing the reality that we had a lot of work ahead of us, with uncertain outcomes. So many questions. Not the least of which were the soul-wrenchers: “Why her?” “Why us?” I wanted to feel that there was some purpose to it all and that it wasn’t some random twist of fate — that maybe there was something special about me and her — and me and her together.

Now, I have to admit that while I consider myself a spiritual person, I will rarely, if ever, bring God into a conversation. I’m not one for the white beard and the throne and the meting out of judgment. And I run in a pretty secular crowd, so no one has ever said that exact thing to me before because that’s not the way we speak.  But I have said that it takes a special person to parent a special child. And I believe that. It gave me comfort when I was looking for answers years ago, and it gives me comfort now during the hard times.

I think communicating it that way conveys the good intention with better words. It’s just a little shift in what can be said, but it means something different. True, anyone can have a child with special needs but instead of “have,” which is passive, “parent” can be active. Not a noun, but a verb. A doing. And if someone does a horrible thing to a child, that is not “parenting.”  That is simply criminal.

Truly parenting a child with special needs absolutely requires a special person. Someone who has strength, patience, resilience, persistence and deep wells of love for the unique person whose care they’ve been given.

After talking to my friend, I realize that she’s exactly that kind of special. She’s an intelligent, fierce mama who will be the absolute best advocate for her child. After looking back at our long, long road, I realize I’m that kind of special, too. Our whole family is that kind of special, and there’s nothing passive about it. We choose it and act on it every day. It doesn’t mean we’re perfect or that we get it all right all the time, but it means we’re purposefully trying hard and doing well by our special needs kiddos. Thinking it over put me at peace with my words.

So if you’re like me, and you want to give some words of comfort, particularly to someone who is just starting on their journey, I think it’s OK to let them know you know it takes a special person to actively parent a special child, regardless of how that child came to them. God, genetics, adoption, whatever. Because it does take somebody special. I don’t think I’ll ever be convinced otherwise. And you know what? If you chose to read this today, I’m willing to bet you’re pretty special, too.

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This post originally appeared on Mom in Uncharted Waters.

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To the Stranger Who Sits Near Me During My Daughter’s Swimming Lessons

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Res float Dear familiar stranger,

I don’t know your name.

You don’t know mine.

You don’t know my daughter’s name or her struggles, other than my quick explanation: “she has developmental delays.”

And I don’t know your grandson’s name.

But every week we sit there among dozens of other strangers and watch our little ones through the glass at swim lessons.

They’re in different classes — to be honest I don’t even know which class your grandson is in. But you watch my daughter and know what group she’s in.

You know when there’s a new lifeguard sitting next to her at the pool, and you look at me to make sure I see they aren’t paying enough attention to grab her when she willfully steps off into the water. Thank you.

You sigh a sigh of relief when the lifeguard is watching and plucks her out without a second’s hesitation. Thank you.

You smile when it’s her time to swim and she high-fives the teacher. Thank you.

This last week you cheered out loud, before I even did, when she floated for ten seconds on her own. Thank you.

You told me she was doing great. Thank you.

I love that you cheer for my daughter with me. It warms my heart.

Thanks,

The Special Needs Mom Who Doesn’t Feel So Alone at Swimming Lessons

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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