In the spring of 1997, a few months after my paralysis, I joined a small group of parents of children with autism who were frustrated with the lack of guidance we were receiving from the medical and educational professionals. In those pre-internet days, we often relied on information shared between parents in the waiting rooms, carpool lines or, in my case, from a small yellow flyer in my then 5-year-old Madison’s school backpack that changed her life.
Stunned by the value of these “happenstance” discoveries, our parent group launched Pathfinders for Autism in February 2000. Our mission was simple: To share with others what we had learned to improve the lives of individuals with autism and the people who care for them. Celebrating “15 Years of Awesome,” our staff of eight — including an individual on the autism spectrum — served over 18,000 individuals in 2015.
So in the spirit of my new mantra, elevate, I’ve answered the challenge with this submission:
After my paralysis, I couldn’t care for Madison on my own so I hired caregivers to be with her 24 hours a day, seven days a week. Although this year has had more rough patches than bright spots for my Madison, I’m grateful for Pathfinders’ prompt that sent me on a search through photos and calendars where I found the names of 68 caregivers who have helped me with Madison. To these amazing individuals, and all the others who continue to help me with her care, I say, “Thank you!” I couldn’t have managed without you.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.
To say that I love parties is an understatement. From planning the theme, to picking out invitations, creating the atmosphere, selecting the food, down to the anticipation of the guests arriving… oh mercy, I’m getting lightheaded just thinking about it. I love people and small talk and games and food; I’m good at parties.
So when I became a mother, the thought of creating wonderful party memories with my children was something I looked forward to and daydreamed about often. I think I had my first child’s birthday party planned before I even picked out his name. It was a pond theme complete with fishing games, party hats and a frog cake, and I was in amphibian heaven.
Every year after that, the parties got harder. And the harder they became, the harder I worked at making them even more elaborate and fun. Maybe, I thought, if I brought a real puppy to a puppy-themed party, our guests wouldn’t notice him ignoring his gifts and playing with cups from the table. You see, birthday parties don’t mix well with my son, who’s on the autism spectrum.
On his 4th birthday, he sat in his room the whole party watching Wiggles videos with his door closed while the other children ate cake and played on his brand new swing set. After the guests had gone home and the cake was put away, I sat in my room and wept. I had just spent my precious son’s entire birthday engaging other children and cutting cake while he sat in his room alone.
Still, I continued to do birthday parties for my son. I mean, what kind of mother doesn’t throw her kid a party? What would people think? Our life was already so different. And his sister loved birthday parties — I didn’t want people to think I loved her more or thought of him less.
He started to reach a socially acceptable age to stop the birthday party charade, and we settled into outings with the family to celebrate his big day, and he was so happy to just be with us. This was around the same time baby number 3 arrived and parties for him started up again.
As you can imagine, my favorite party was my own personal pity parties, and they were quite an affair! But what’s that saying… “If you want to make God laugh, tell Him about your plans.” Needless to say, I imagine He laughs His Holy head off at me daily. Following my son’s autism diagnosis and four failed attempts at birthday parties, I decided something had to change. I knew people would look at me strange and I might even make some family and friends upset, but we just couldn’t do it anymore. All the planning, the money, the decorations… it hadn’t been for my boys at all. It had been for me. I desperately wanted “normalcy” for them — and for me. I wanted pictures and cake and friends to celebrate, even if that meant making my child miserable in the process. I knew deep down I owed them more than that — they deserved so much more than my selfishness masked by brightly colored balloons.
As Eli’s 5th birthday approached, I racked my brain about how to make his birthday special and memorable and his. It’s hard to ask a child what he wants to do for his birthday when he can’t speak, but because he’s ours… I brainstormed with my fellow Eli experts. I remember asking my husband and my big kids, “If Eli could have a day that was just his, what do you think he would want to do?” “Well, he likes looking at himself in the mirror!” “And he likes eating at Moe’s!” “Oh, and since we can never figure out what he likes to play with, we could just take him to a toy store and let him play with everything!” And Eli Day was born.
We started off the day with lunch at Moe’s… you know, “Welcome to Moe’s!” Eli got his favorite lunch and two cookies, and we let him stand up in the booth and invade the other patron’s personal space as much at he wanted.. I mean, it’s Eli day! Next, we headed to the biggest mirror we could find: the one on the side of the escalator at the mall. Although people stared and looked annoyed, we let him loose. He ran in front of that mirror a million times, jumping and doing his “Eli moves” and faces. I had never seen his little face so happy — that beautiful face was beaming. And though it wasn’t a “normal” birthday activity, it was absolute perfection to me. It totally kicked “normal’s” butt, and I didn’t have to pay a “per kid” fee for everyone else to have fun. Next we headed to the Toy Store; Eli was in charge. We let him walk down every aisle, touching every toy. When we thought we saw something that peaked his interest, we would hold it in front of him along with another option and tell him to pick, and when he did, he got to put it in the cart. And when he insisted on buying yet another Woody doll, we happily agreed. It didn’t have to make sense to us because it made sense to him and it was his day. Instead of cake when we got home… that’s right folks… more cookies because that’s Eli.
As I lay in bed that night and thought about his day, I wept — but only happy tears. Are you starting to see a pattern here? I’m a crier! For the first time, I celebrated my son for exactly who he is — all the things that make him different and unique. It was the first birthday I didn’t spend my day making sure other children were happy… I spent my day watching him be happy. And that was the best gift I could have ever received.
So is my career as a party planner done? Nope, I just threw a pretty awesome (if I do say so myself) glamping slumber party for my daughter last week complete with make-your-own trail mix, an inflatable deer and a faux campfire. But she is her mother’s daughter and like me, she loves a party and being the life of it. That’s what made her face beam on her birthday. Just like Isaac prefers a day riding roller coasters with his dad. That’s his idea of a perfect birthday! I’m convinced that no three children containing the same parental DNA have ever been so different. But I like different, and I think we do it better than anybody.
The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with.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. Check out our Submit a Story page for more about our submission guidelines.
At the end of March, Robert De Niro, co-founder of the Tribeca Film Festival, announced the anti-vaccine documentary “Vaxxed: From Cover-Up to Catastrophe” was removed from the festival lineup.
“Vaxxed” is directed by Andrew Wakefield, the former doctor behind a 1998 study published in the medical journal the Lancet that claimed to find links between autism and the MMR vaccine (measles, mumps and rubella). The study was retracted by the Lancet in 2010. Wakefield lost his medical license the same year.
De Niro, whose 18-year-old son is on the autism spectrum, released a statement following the decision, stating:
My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family. But after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for.
On Wednesday, De Niro appeared on the “Today” show to talk about the controversy. “I think the movie is something that people should see,” he says in the interview below, adding that he hasn’t fully explored the backlash.
CJ and I have been married 10 years this October, and although it didn’t occur to us that he was autistic until our seventh year of marriage — there have always been certain ways about him that I just loved and especially appreciated, even before the diagnosis. Turns out — these things that I love most about him might be his most “autistic traits.”
1. His ability to fix anything.
You have no idea how much you appreciate being married to someone who can fix stuff until you break something and they’re not around to help! CJ can fix anything, seriously. The amount of times stuff has broken and I’ve been able to rely on him to fix it is countless. I’m talking toasters, toys, kettles, car lights, toilets, hammocks — the list goes on. Also, theres something really sexy about a man who can get stuff fixed. His ability to just reconstruct something that has been deconstructed never ceases to amaze me.
2. The way he can adapt to any social situation.
My husband knows exactly how to behave in any social situation he is placed in. And even though he may not always enjoy social occasions overly — he knows the decorum, and he pulls it off flawlessly. Which is more than I could say for myself! It would no doubt do me a world of good to take a leaf out of his book and cease my bull-in-a-china-shop ways, but I don’t see that happening too soon. Because he is so awesome socially, he makes a great host at parties, too.
CJ is incredibly visually perceptive, which means he is amazing at picking up discrepancies that other people might otherwise miss (myself for example). For us, this roughly translates in real life to him being an amazing baker and pizza chef. Me? I’m more of a “chuck it all together and hope it tastes OK/it tastes good but doesn’t really look like it’s supposed to” kind of baker. But CJ? He can follow recipes to an absolute T and recreate cakes, pizzas, desserts and pies to such a detailed level that they resemble the photo in the recipe book, and probably taste better. This means that, of course, birthday cakes for our four daughters are his domain — naturally. And although my pizzas may taste good — they have nothing on CJ’s.
I absolutely love being around people who just tell it how it is for them and speak their truth. And that is definitely how CJ is. He does not have the time or inclination to pander to ignorance. How this translates to us is that I know where I stand with him. He is to the point. I know I push his buttons and broaden his comfort zones continually, but I can definitely rely on him to tell me when enough is enough. Being consistent and to the point is definitely a positive personality attribute in my book.
5. He is methodical.
If there is a process that needs to be carried out, CJ will analyze and evaluate the entire scenario in his head, calculate how it needs to be carried out and work out the most effective way to do it — and then do it, flawlessly first go. This is a welcome contrast to my “ah I’ll just jump straight in/oh crap, I’ve messed it up” method. The amount of times I have witnessed him standing beside me shaking his head observing my tactical errors is too many to count. I am grateful that he does let me learn my way (the hard way) even if he gives me a bit of a tease afterwards.
6. He is a complete contrast to me, and he completes me.
Many people may live under the assumption that only people who are alike can get along. I think this is a load of rubbish. CJ and I are different on many levels, but that is what makes us so fantastic together. Because we balance each other out. His strengths are mostly my weaknesses and my strengths are things he struggles with. His interests aren’t the same as mine, but that’s OK because that leaves a lot of room for learning. He teaches me so many things and expands my awareness, and I am sure I do the same for him, in my way. Different does not mean bad. Different simply leaves plenty of room for expansion.
The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list.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. Check out our Submit a Story page for more about our submission guidelines.
Earlier on this week I decided to take my girls to the local nursery to buy some potted flowers to plant in our front garden, to add some color. One of my daughters, who is autistic, came along with me excitedly; she loves the nursery. We walked through the aisles, and she was in awe of all the color and all the different variations of plants that there were to look at.
The deal we agreed to was: We could pick one color each and one plant each. She wanted pink. So she went about finding some pink flowers to take home and plant, while I grabbed a steel trolley to put our plants in. After spending a lot of time looking at each pink plant she could find and weighing up which one she wanted more, she suddenly began crying. Because although she had picked out one plant she wanted, she was devastated at having to leave all the other pink ones behind because she didn’t want them to feel like no one wanted them.
I tried to persuade her into the checkout area, but she began to cry even harder shouting, “But they’re all sad. They want to come home, too! I don’t want to leave them. They need to find a home! We have to take them all! They’re beautiful, too!”
We had a discussion there about how they were waiting for their homes and how our garden simply couldn’t fit them all, and although she didn’t seem totally convinced and begged me to bring a few more “pink flower babies” home — she calmed. She calmed, that is, until after I walked to the car with her and her baby sister on my back, buckled her into her carseat and started the car… and there she sobbed with her head in her hands and real tears streaming down her face the whole way home.
She was crying for the leftover pink flowers that would be left all alone, left without homes to live in, cold and scared.
I shared this story about my daughter and her pink flowers because I want to challenge what I’ve found to be a largely-held (unfounded) myth that children with autism often do not have empathy. Because for our family and many others I know, this is not the case. In fact, I would go so far as to say the opposite is true: Our children feel so greatly, and so very deeply beyond our comprehension.
The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you?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. Check out our Submit a Story page for more about our submission guidelines.
The first time it was a shock. Casual “we’re too busy” replies to invitations, the realization that it had been weeks since we’d seen our friends, and then months. I went over it in my head — had I said something wrong? Were they just really busy? I didn’t want to jump to conclusions, but eventually the conclusion kind of jumped on me, like a rush of cold water. It may be my son. They didn’t want their kid hanging out with my kid. My kid, who hoarded toys and already had the rules for games worked out. My kid, who so desperately wanted to play and just needed time to figure it out, to transition between what he imagined and the reality. It took silence for me to get it, no longer an empty excuse at the end of the line, just silence. But get it I did, and gradually my son stopped asking for his friend, stopped putting aside toys and planning trips to the park.
I cried, for my boy who had experienced isolation at the tender age of 3. For myself, who had previously believed that when people said “It’s OK” they meant it. For the loss of a friendship I had relied on and valued. We were a bit bruised, but we threw ourselves into finding new friends with open hearts.
The second time was rage — white-knuckled rage and carefully composed text messages while we processed what was happening. All the things we wanted and needed desperately to say, and yet couldn’t. The message we never sent is still on the tips of my fingers when I remember the accusations. When you make decisions about whom your children can and can’t play with, other people suffer. We all suffer.
If it happens a third time, then I’ll know what to say: Trust your child; they have chosen to play with my kid for a reason. They likely see something — a spark, a kindred spirit, an appreciation of difference, and they appear to like it. Yes, it can be complicated. But trust your child, let them find the ways to make this friendship work, support it like you would any other, and above all, don’t be scared. Don’t be afraid of talking to us, don’t be afraid of our son.
I believe if you want your children to grow up to be genuine people who accept and embrace diversity in all its forms — then I feel they need these experiences. They need to know how to treat people with disabilities as people; they need to become good at finding the commonalities rather than the differences. This may not be easy, but changing the world rarely is. I’d say give your child the gift of many different friendships with many different people. Let them play, whatever that looks like.
I believe your children need my child. They need his boldness and his humor. They need his excitement about hydraulics and they need to see him racing around outside before he sits down to write. I feel they need him as a valuable member of society, a classmate, and as a friend. He has so much to offer. Your child sees that; trust them and eventually you may see it, too.
The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded.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. Check out our Submit a Story page for more about our submission guidelines.