July 30, 2010
In honor of today’s SPD blogger network blog carnival, here’s a picture of my little guy at my mother’s wedding…
"It's not so noisy now!"
The noise canceling headphones allowed my little guy to sit at the head table near the music and not get upset. The pressure of the headphones on his cheeks helped him feel better as well. (We also took these to Toy Story 3 thank goodness!!)
The SPD blogger network is a group of wonderful mothers and fathers writing about their kids with sensory processing disorder. For more information on SPD and the blogger network, click on the link on the right hand side of my home page that says “SPD Blogger Network”.
“Kodachrome, they give us those nice bright colours
They give us the greens of summers
Makes you think all the world’s a sunny day, oh yeah” – Kodachrome by Paul Simon
July 27, 2010
This was going to be a post today about the power of words. About how important it is to choose our words and tone carefully when we speak to each other because you never know what is going on behind that other person’s closed doors. About we should use our words to lift each other up, and not to knock each other down.
But life got in the way today.
Today I finally took my head out of the sand and brought my youngest in to our doctor for a referral for a hearing test.
I’ve known for a while that his speech was delayed. We’ve all known. And thanks to some gentle prodding from my support group friends, I called our doctor to get his ears looked at. At the visit, our pediatrician listened to me talk about how early intervention didn’t pick him up for services because he wasn’t delayed enough at 19 months. She listened to me as I told her that he’s trying to communicate, but just can’t make the sounds, that nothing has progressed beyond the most basic words and every other attempt at new words sounds like he’s under water. She listened to me as I shared my frustration because I just didn’t know what to do to help him along.
Then came the questions to me: Did I remember if he was delayed in his babbling as an infant? Does he seem to be getting frustrated because he can’t communicate with us? Can he identify different sounds, directions, different people’s voices? She’s asking me these questions through his blood curdling screams as she’s cleaning out the giant balls of wax out of his ears.
The answer given by this guilt-ridden mother of three? I have no idea.
And as that guilt swirls around in my head, I hear words like “immature speech” and “possible ear fluid” and “oral-motor function”. Phrases like “The Learning Center for the Deaf” and “playing catch up”. Reminders like “reduce that pacifier use as much as possible”.
After all the ear flushing and scraping is done, and after all the screaming has subsided thanks to a Curious George sticker, we make our way home with referral in hand. And I think we know he can hear. He understands EVERYTHING. He can get his shoes and bring them to me when he hears it’s time to go in the car. He can hear a plane going by overhead. He can dance along to “Bad Romance” and hand the remote to me when it’s over. He can mimic the Elmo’s World music. He just can’t say shoes, plane, Lady Gaga or Elmo.
And of course, I wonder if it’s something I’ve done. Was it too much TV? Not enough reading? Too much of everything else going on? Did his brother’s autism pull me away from him too many times that I couldn’t help him learn his words earlier? And as a family, can we really go through this again? It’s not about finding the physical strength to go through the potential therapies, doctor’s visits and all the work. It’s about finding the emotional time and energy to make it all happen.
I have to remember it could be so much harder. He is a happy, healthy, loving little boy who is full of energy. He has a laugh that is infectious and a smile that can light up your day. He doesn’t have delays in any other area and we don’t see the other signs like we did with his brother. S0 I have to have some hope. Hope that it’s just a speech delay and nothing more. Hope that it’s something that a few months of therapy will correct. Hope that someday I”ll hear him yell “Mama” because he’s looking for me.
This post was supposed to be about the power of words. Instead, it’s about the absence of them. In many ways, that is just as powerful.
“Shout, shout, let it all out, these are the things I can do without
Come on, I’m talking to you, come on
Shout, shout, let it all out, these are the things I can do without” - Shout by Tears for Fears
July 23, 2010
“Wow! Everything is so…different!!”
Those were Howie’s words when we walked in after our big house cleaning occurred. We had spent the afternoon at a friend’s pool, and came in just as the nice ladies were finishing the last of the dusting. He was right, everything was very different. Clean doesn’t even begin to describe it. The kitchen and bathrooms were scrubbed, the carpets had that cool triangle pattern in them from being vacuumed well, and we no longer stuck to the floor. They even cleaned inside our refrigerator and washed out the dog’s food and water dish – things I haven’t done since we moved in.
“I haven’t seen it this different since I was a baby!”
Howie had just walked into our toy room. The bookcase that housed his toys and puzzles was up against a different wall, and his Hot Wheels tracks were in a new spot across from the window. The Thomas trains were piled up near the lamp and the blocks were moved up higher.
“This is SO different!”
The nice lady in charge was smiling from ear to ear. “I love hearing that!” she said to me. We were both grinning as Howie walked around pointing out all the things that had changed. She was happy because she knew that meant she had done a great job. I was happy that the house didn’t smell like spoiled milk anymore.
As I was paying the nice ladies, Howie and Gerry disappeared upstairs to their rooms to see how clean things were up there. First I heard the “Wow! This is SO different!” from Howie again. And then, a giant crash.
Tim had just walked into the house at this time, and we both went flying up the stairs to see what had happened. The nice ladies had put Howie’s container of Hot Wheels cars up on a shelf so they could vacuum under his bed, and he had tried to pull it back down without help. I made sure he was ok, came back downstairs and continued to marvel at the new color of the carpet.
Several quiet minutes went by which in my house is always trouble. I went upstairs to see what was going on. Peeking into Howie’s room, I saw that he had taken out about 20 cars from his container, and he was quietly lining them up in a row.
The air went right out of me. Along with running around in circles and babbling, lining up Hot Wheels cars is what Howie does when he’s out of sorts. It’s his way of making order in his world when things are not right. It’s a behavior I haven’t seen from him in a long time, not since we had started him in OT therapies at school.
How could I have missed that the “Wow! Things are SO different!” was not a statement of happiness, but more of a exclamation of a world turned upside down. The house smelled different, looked different and felt different. In my head I saw this as a positive thing. In his head, nothing felt right.
The experience reminded me once again that I have to look at everything through his eyes, even something like cleaning the house. My only thought when scheduling the cleaning was thinking about me and how good I was going to feel walking into a spotless house. I never would have imagined that it would have any impact on my kids, except that maybe now their pajamas wouldn’t be covered in dog hair after playing in their room before bed.
It didn’t take long for “different” to become “the same” again. Within 10 minutes, Gerry had spilled chocolate milk on the kitchen floor. An hour later, every Lego Duplo block we own was spread out all over the toy room. After dinner, dishes piled back up in the sink and leftover crumbs had made their way into the living room. And even though Howie was up twice during the night that night for the first time in weeks (new pillowcase and sheets tucked into the bed rail), eventually everything was back to how it was. Not normal. Just our normal.
The sticky spot on the kitchen floor is back. It’s just in a different place. And now, the epic NASCAR-style race can continue once again.
July 19, 2010
When I became a parent for the first time, I sought out many different mothers who had been there before, learning all I could from them in an attempt to become a better mother myself.
When I became a parent of a special needs child, I only sought out one.
Let me tell you about this friend of mine.
And even though I have chosen to share our story publicly, she has not. So for the purposes of this post, I will call her “Hope”.
I met Hope on the first day of preschool for my oldest son Gerry. Having just moved to town a month before school started, we didn’t know anyone at all. As we waited outside the school doors for the teacher to arrive, Gerry hid behind my leg and I wrestled with Howie, who was then 6 months old. Hope’s son came right up and introduced himself to us. Hope, slightly embarrassed by her son’s forwardness, came up to first apologize and then say hello herself. She was so kind and welcoming that day that I tried to seek her out each afternoon from then on. We discovered that we had a lot in common and quickly became friends. Gerry had his first solo playdate at her house that fall.
I can’t remember the exact moment when she confided in me that her older son was on the autism spectrum. However, I clearly remember my response: “oh, really?” That was all I said. At the time I really had no idea what she was talking about. Autism was a foreign word to me – conjuring up images of “Rain Man” and rumors of what I had heard about Albert Einstein. It didn’t really compute with me. I had seen her son when we were over for those playdates. He could talk. He could read and play and communicate. There were times when she had pulled him aside for breaks, and had told me it was because he was on a strict behavior plan. I thought she was just describing her parenting style to me.
I didn’t really think of it much after that day. We continued to get together for playdates, although they became harder to plan when the kids ended up in different kindergarten and first grade classes. Hope and I would also try to get together without the kids so we could have some time to talk without interruption.
It’s around this time that I started to notice things going on with my own son Howie’s behavior. First it was his food aversions – his reluctance to eat anything with any sort of texture or cold temperature. I remember telling Hope about it, sharing my frustrations and confusion with her. She sat, listened, gave me some suggestions and said “That sounds a lot like my son when he was Howie’s age”.
Then at age two it was Howie’s behavior. His inability to process anything we told him. His strange lack of fear of running into the street and the fact that he couldn’t get it when we told him how dangerous it was. The way he just laughed when we’d discipline him. We had this feeling of complete incompetence when it came to parenting, because nothing we did seem to work. I shared this all with Hope over various phone calls and lunch dates. Each time she’d sit, listen, offer suggestions and say “That sounds a lot like my son when he was Howie’s age”.
It was these last conversations that helped me see what I had been missing with Howie. Clearly something was different about him in the same way that Hope’s son was different too. When our school system evaluated Howie and deemed him ineligible for services, it was Hope that I turned to for advice. She told me to trust my gut, seek out an outside opinion and get on every and any wait list to see a developmental pediatrician. And she reminded me that it was nothing to be ashamed of, that whatever we learned could only help us and help Howie.
Hope was the first person I called when we finally got Howie’s PDD-NOS diagnosis. I told her what the doctor had said, that she thought Howie was on the spectrum but on the “mild, high-functioning” end. After several minutes of me relaying the laundry list of services and supports that the doctor suggested, I was finally quiet. Hope’s only question to me was “So, how are you feeling?”
That’s the kind of person she is. Hope wasn’t curious about the social speech classes, or the ABA services, or the one-on-one aide that the doctor recommended because she knew all about those things. She was more concerned about how I was taking this all in, and how I felt about the diagnosis.
“Relief”, I told her. “I’m really relieved. Now we can move on and get the help we need.”
And really, that’s how I feel about Hope. Relief. Relief that I met her when I did so that we could become friends before I needed her guidance and support. Relief that she was smart enough and caring enough to push me in the right direction to get the diagnosis we needed. And relief that I had someone in my life who knew exactly what I was going through.
I know that I’m lucky to have had a friend like this. Without her, I’m sure I’d still be struggling with the challenges of figuring out what autism spectrum disorder means. I know there are many mothers and fathers out there going it alone without anyone they can talk to. Every parent deserves to have someone they can turn to who will sit, listen, offer suggestions and say “that sounds just like my son”. Every parent deserves a “Hope”.
“When you’re down and troubled and you need a helping hand
and nothing, whoa, nothing is going right.
Close your eyes and think of me and soon I will be thereto brighten up even your darkest nights…
you’ve got a friend.” – You’ve Got A Friend by James Taylor
July 16, 2010
I am currently overseeing an epic NASCAR-style race through my house.
I am supposed to be furiously cleaning. Every year for my birthday, my mother gives me the present of having my house cleaned. And finally, exactly six months after my birthday, I have it scheduled for tomorrow. It is sorely needed, as the house has become a disgusting combination of a movie theater (with those sticky floors) and a public bathroom (I blame that one on the fact that I live with all boys, including one just barely toilet trained).
I just can’t keep up with the dirt and the clutter. My days are filled with refereeing pillow fights or breaking up arguments over Legos and Thomas the Tank Engine trains. If I turn away for a minute to get the vacuum, or clean a toilet, or empty the dishwasher, inevitably the baby climbs onto something he shouldn’t, or Howie is tickling the baby too hard, or Gerry is trying to watch a show but Howie keeps crashing into him. I spend more time as a police officer than a housekeeper.
The “nice ladies” who are coming to clean gave me two weeks notice (we call them the “nice ladies” because they are nice enough to not call social services on us when they see the squalor that the kids live in). The woman in charge told me that should give me enough time to “organize things so I could find them again”. Loosely translated, this means “I’m giving you two weeks so I can find your kids’ bedroom floor”.
Recently, my Facebook friends and I had a discussion about which we’d prefer more – someone to cook for us or someone to clean up after us. For me, that choice is easy. I absolutely hate to cook. I’m sure some of that has to do with the various food issues in my house. With my husband’s vegan diet and Howie’s food aversions and intolerances, making one meal for the five of us is quite a chore. And I’m not good at it. There’s no satisfaction at all for me in making dinner. Cleaning is something I actually enjoy. Sometimes it’s the one tangible visual accomplishment I have – a clean counter top, a basket of clothes put away in a bureau. I can look at that and say I got something done.
But now my two weeks have gone by and I haven’t accomplished anything. I just can’t get to it all.
I’m watching the boys run those laps inside our house – all three of them chasing each other at a speed more appropriate for a high school track than a living room floor. Instead of cleaning off my desk so we can tell what color it is, I am yelling things like “That’s too fast!” and “Don’t push your brother out of the way!” and “I’m going to throw the red flag if you don’t slow down on the corners!!”
My husband always reminds me that the only thing that matters is that the kids are happy and healthy and raised in a loving environment. He tells me that the mess in the house should not be seen as a reflection of the chaos and stress of our everyday lives, but rather as a statement that taking care of our kids’ needs come first above all else. He reminds me of this most often when the house is at its most catastrophic state, perhaps trying to convince us both that this is true.
So with that in mind, I’m waving the checkered flag at the end of the race. The finish line is that large sticky spot on the kitchen floor.
“Clean up, clean up
Clean up, clean up
Everybody does their share” – Barney the Purple Dinosaur
July 13, 2010
It was another one of those nights when I couldn’t sleep. By 2am, one kid had woken up once, another twice, and I was wide awake from my efforts to get everyone back to sleep again. So, as I usually do, I just laid there in bed thinking. Sometimes I think about what to pack the kids for snacks for camp. Or I wonder if I forgot to put the laundry in the dryer. Sometimes I think about the long list of things I haven’t been able to get to. This was one of those nights.
But instead of the thoughts leading towards my inability to empty the dishwasher, or put the kids’ clothes away in their bureaus, or the fact that the house hasn’t been vacuumed in a week, I started thinking about all the activities I haven’t been able to do with the kids. We don’t go to the playground, or play groups, or museums, zoos, or mini-golf. Or even the library. The kids ask, especially Gerry, but the answer is almost always “not today”.
I laid there thinking of how I got to this place of being so paralyzed by fear or worry about going out with all three boys. Maybe it was just laziness. When Gerry was little, we did everything. We did an infant play group that morphed into a group of friends that continued to meet for a year after. I took him to gymnastics classes, music classes, playgrounds, day trips, the beach. Gerry was a “good kid”, meaning of course that he clung to me and was hesitant to join in any rough-and-tumble activity until he warmed up to the situation. That meant that he was never the one to instigate any battles or throw sand at other kids. He would share his toys, almost to a fault. It was never me as the parent doing the apologizing for my kid, the “I’m so sorry he pushed your kid down the slide into the dirt” statements.
I closed my eyes and remembered when that all ended. Howie was a cranky, colicky baby. He never napped well, and when he did it was only on my lap or my bed. That completely restricted our ability to do much of anything when he was very little. And as he got older, his sensory issues really started to flare up. Movies and museums became very difficult adventures. And don’t even get me started about the zoo. We took him when he was about 2 years old, and one loud squak from the peacock and we were done. I ended up having to carry him through the rest of the zoo while his face was buried in my shoulder. Even storytime at the library became an impossible outing. Howie couldn’t sit still in the circle to hear the story or listen to the music, so he’d run off. I’d chase him, Gerry would follow me out, and that was the end of that. When Lewis came along, I was finished. I couldn’t chase Howie, listen to Gerry complain about what he’d missed, and try to keep a baby asleep through his nap time. So we just stopped.
I opened my eyes again and got very sad. What was it that was keeping me from doing these things with the boys now? Was it the fear that something might happen? What could that something be? A tantrum? Screaming and yelling? From me or the boys? Was it the fear that we’d see someone we knew while this was going on? Was it the kids that I was worried about, or was it my own pride? I finally settled myself back to sleep, wondering if the schedule for the next day would include more than just a trip to Target.
The next morning, I got the kids their juice and checked my e-mail as I usually do. In my inbox was this blog post from a mother who is a lot like me. Like me, she had spent the night planning the week for her kid, knowing he needed routine and a schedule. And like me she’s not a planner. In her post, she writes about realizing there were things she hadn’t done yet with her youngest that she used to do with her older one. So she put it on the schedule. It was the push I needed to get us out again.
So “library” went on the Monday schedule.
The boys had been good all day so after Lewis woke up from his nap we got in the hot car and headed to the library. I chose the one in the next town over – telling the kids that it had better books for their age, but really it was because I figured we’d have less chance seeing someone we knew. We pulled into the parking lot and a big “Sorry We’re Closed” sign hung on the door (you’d think they’d update their website with their summer hours!!). So with a deep breath, and with moans from the backseat of “But we wanted to go to the LIBRARY!!!”, I turned around and headed back to our town’s little library.
Luckily for us, and the other people in our town, the children’s part of the library was empty. I could see the surprise on the face of the librarian when we came in – she recognized me, but not the kids. Gerry wandered around looking for the one book he hadn’t read yet. Howie climbed onto the stool, pulled out three random books and proclaimed that “these are the ones I want to buy!”. Lewis spotted the crayons, climbed up into a chair, and proceeded to draw all over the table. I felt like I was herding cats.
But we survived. Not sure the library did. Somehow we managed to leave with two books for Gerry and three for Howie before Lewis turned off every computer in there. We even signed up for the summer reading program which I may try to actually do this year. With Lewis squirming under my arm, we gathered up our books and climbed back into the now screaming hot car. I was beaming with pride. Hurray for us! We went to the library! And even better, that must have killed an hour or so of the afternoon! It must be almost dinnertime!
Fifteen minutes. We were only in there fifteen minutes.
But we did it and that’s all that mattered. While I’m still wary of going out with all three boys alone, I know that I have to try. I owe it to my kids to give them the experiences they deserve, and not get wrapped up in my own fears.
I’m now planning our schedule for the rest of the week and thinking of what we could do. Dare I say, maybe the zoo will be on that list?
“But what do you say to taking chances,
What do you say to jumping off the edge?
Never knowing if there’s solid ground below
Or hand to hold, or hell to pay,
What do you say?” – Taking Chance by Celine Dion
July 10, 2010
We just got back from the happiest place on Earth.
No, not Disney.
Disneyworld (or Disneyland for that matter) is just not feasible for my family, logistically or financially. Flying with the five of us, and our kids at all different ages and stages, is just incredibly difficult right now, not to mention very expensive. Add in admission to the park, hotel, finding food for my vegan husband and corn-free Howie…Disney is just out of our realm right now. Plus Tim hates to travel. So for the sake of our sanity and our checking account, we keep our travels to car trips.
So for us, our “Disney” is Storyland, in the White Mountains of New Hampshire. And for my three guys, this place is heaven on earth.
This was our sixth year at the park. We first went with Gerry when he turned three (and it was just him) and we’ve gone back every summer around his birthday ever since. The park has been in existence for over 55 years, and Tim’s mother remembers taking him when he was a little kid. The park has evolved over the years, of course, but the overall point remains the same – giving kids between the ages of 1-10 and their parents a fun, safe place to have a fantastic family vacation. For my guys, it’s the one family vacation spot we go. Howie talks about it ALL year long, and asks starting in December if it’s time to go back to Storyland.
There are many things that make this park special for a lot of families. For us, with all of our “special needs”, this park is perfect. First of all, almost all the rides are for kids 36 inches and under. That means there’s no “sorry, you can’t go on that very cool looking rollercoaster”, or “I know that Crazy Barn looks really awesome, but you’re too small” talk. There’s very little saying “No”. My kids get to choose the rides they want to go on, not have the park choose it for them. Even the baby got to do a bunch of rides, which thrilled him to no end. Parents can also fit on all the rides with their kids, so it’s truly a family event.
Not to say there aren’t plenty of meltdowns. But they seem to happen around 2pm at the front of the park at nap time. Or in my family, when it’s time to leave.
Secondly, the park is relatively small and feels very safe. Because the rides are geared towards the younger set, there are no teenagers or grownups trying to muscle their way on any of the rides (nothing against teenagers or grownups, but when I’m with my little kids I don’t want to worry about someone bouncing the ride to make it crazier, or swearing, or causing a ruckus). Everyone there seems to be either a parent, a grandparent or some relative, oohing or ahhing over seeing Cinderella, waving to the train as it goes by, or sharing an ice cream with their kid. I’m sure they have had issues in the past with safety, but you wouldn’t know it. There are no security guards or policemen walking around. Just Mother Goose and the Old Lady Who Lived in a Shoe.
It’s the most family friendly place I’ve ever been. They have special “Mama’s Houses” for moms to feed, change and nap their babies, complete with rocking chairs and clean changing tables. Every restroom has at least one unisex family bathroom, so we can all go in together. The rides are clean and all the ride operators are incredibly friendly. We try to go at off-peak times, so we’ve never waited on a line for more than 10 minutes. If the line is long at one place, we move on and come back at another time.
Thirdly, and most helpful to me, they list all their food choices and ingredients (color coded by allergen) on their website. That means before we even enter the park I have a list of foods that both Tim and Howie can eat. Yes, that list is short (for Howie it was five foods that were corn-free) but at least I know those foods so I’m not checking labels. You can also bring in your own food to the park, which is a life saver (and money saver) for my family. Our lunch consisted of yogurt smoothies, goldfish and apples that I brought from home. And they don’t care.
And finally, for us, it’s the one place where all of my kids’ needs are met. Lewis can go on rides, throw balls with reckless abandon in their “Loopy Lab”, and run through the park from place to place. Howie can map out his entire day based on all the rides he wants to go on and run/climb/jump and get all his sensory inputs without feeling overwhelmed. Gerry can do all the rides by himself now, and we save special rides just for him and Tim to do while Lewis, Howie and I ride the train around the park (over and over and over again). I must say, Gerry was truly the hero of the day. He went on rides with both Lewis and Howie, even the ones he didn’t want to. He rode alone on certain ones because Tim and I were in a seat with one of the other two. And he let Howie go ahead of him in line – twice – when the purple electric car was coming and Howie was screaming that he needed to ride in that specific car. Tim and I are, for the most part, worry-free. Our kids smiles make all the difference.
Not that the trip was perfect. Things were certainly more stressful now that we have a toddler – the car ride was hard because Lewis was trying to nap but Howie kept shouting/making noise/asking for hugs/stopping to pee. Lewis also did his best to set a new world record in hotel room destruction. And it was hot. Very hot. But we still managed to go swimming, take pictures, and enjoy each other’s company – the three most important components to a successful family vacation.
Howie’s already planning our next trip back.
“There is this little song I wrote
I hope you learn it note for note
Like good little children
Don’t worry, be happy” – Don’t Worry, Be Happy by Bobby McFerrin
July 5, 2010
I’m a pretty private person.
I know that seems weird to say, considering I write this blog now, but in the non-virtual world I’m pretty good at keeping things about me to myself, only sharing with close family and a few select friends.
This need for privacy is certainly something I learned from my parents, and especially my father. Despite his very public political life, our family life was kept behind closed doors. Nothing illustrated this more than when he got sick with pancreatic cancer. Inside our house, we were a mess, scrambling to get him whatever help we could while attempting to understand what his absence would mean. Outside our house, however, we all circled the wagons at my father’s insistence. When asked how he was doing, our family mantra became “Yup, yup, we’re doing ok.”
But we weren’t doing ok.
By denying this fact to the rest of the world – specifically our friends and neighbors – we were denying ourselves the ability to get outside help and support. We closed ourselves off from the shoulders to cry on, the hands to hold when things were rough, or the understanding voice on the other end of the phone saying that they had been there too.
Fast forward to last year when we started to really notice that things were a little different with Howie. As I’ve said before we knew for a while that something was going on with him, but when he started preschool we could really see that he needed help. My privacy instincts kicked in immediately, and while we were waiting to get him evaluated I kept our whole story to myself, with the exception again of a few family members and close friends. Living in a small town, it would be easy for one person to innocently share with one friend what we were going through, and then that friend would tell another, until the game of “Telephone” had been played to the point that Howie’s story would become something not even close to the truth. I was already uncomfortable enough with the accommodations we had made to his schedule (increasing his school time from three to five mornings, having him enter school before the other kids, picking him up at a different door) – I didn’t need everyone in town questioning why we were getting seemingly special treatment.
Once we got Howie’s PDD-NOS diagnosis, however, I knew in my heart it was time to let it out. Educationally, we didn’t really have a choice. His autism diagnosis led us to a full day/full year preschool program and the need for an IEP. We were now entering the school through a different door and picking up at a different time – clearly something noticed by all the parents who we had previously waited with before school started.
I first let down my guard with three other mothers who were dropping off their kids for the full day special program. Introducing myself to them was not easy for me, but they were so warm and welcoming and understanding it was hard not to think that I should share more. Howie and I attended a gymnastics class in town just for kids on the spectrum and I wrote an essay about it for Autism Speaks. When it was published on their website, our story was out.
Following that post, Tim and I spent a lot of time talking about how I had “outed” Howie to the world as being on the spectrum, without him having a say in it at all. As I’ve written before, we came to the conclusion that this is who he is, and his behavior or quirks or whatever we may call it are explained by his ASD and we didn’t label him for life with something that wasn’t him.
But for me it was more than just that. Sharing his story was the only way for me to get the help and support I needed to get through the day. It was the only way I could feel that I was not alone. Sharing led me to three new wonderful friends, to starting our local support group, and of course, to writing this blog.
I am still figuring out when to break through that wall of privacy around me. I have a constant debate in my head when we meet new people about how much to share with them. Do I tell the mom at the park when she’s staring at Howie when he’s making his noises? The neighbor who calls to ask about a playdate? The swim instructor who can’t understand why Howie won’t put his feet down on the dock? Considering the stigma that is still attached to the word “autism”, I don’t want him shunned from playgroups or activities, yet I want others to know why he behaves the way he does.
When asked by casual acquaintances and extended family members how things are going, I still find myself answering “yup, yup, we’re doing ok”, even when we’re not. But I’m getting there. Because I know that the more I share what’s going on in our house, the more others will understand Howie and spectrum disorders in general. And because I know I need those shoulders to cry on and those understanding voices telling me that I’m not alone.
“It doesn’t matter what they say
In the jealous games people play
Our lips are sealed
Pay no mind to what they say
It doesn’t matter anyway
Our lips are sealed” – Our Lips are Sealed by The Go-Go’s