When My Son With Autism Wandered Into the Middle of the Street

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Two minutes. That’s all the time it took. We were distracted for two minutes and he was gone.

Our favorite babysitter, Maura, the daughter of an old family friend, was just home from college and my mom and I were welcoming her back. We were telling her how excited we were to have her home for the summer to help out with watching my son, Max, and my daughter, Stevie. She had just walked in the door. We were hugging and talking for two minutes. We turned around and he was gone.

It was mid-May and finally warming up in northern Ohio after a long, cold winter. All Cleveland kids were busting at the seams to get outside to play. We had walked the bike path to the park a few times already this season, and apparently, Max decided to make the trek all by himself. But instead of staying on the path, he was walking down the middle of the street to the park. It’s a four-lane divided road and pretty much the main drag in our hometown. He was 7 at the time.

We’ve all heard stories like this in the autism community. Especially in the summer and always surrounding holidays like the Fourth of July.  This week alone, I’ve read eight accounts of children on the spectrum who are currently missing. It’s a weekend, a holiday, a different schedule, family is visiting or there’s a barbecue going on in your backyard. Whatever the reason is, we get distracted. Parents don’t have eyes in the back of our head, and kids like Max can be slippery. He doesn’t spontaneously talk very much. He didn’t say a word and somehow slipped outside when we weren’t looking.

And I’m sorry to say, but this has happened more than once. There have been many “almost” incidents when Max escaped from me and went outside alone. Once I was running around my yard like a lunatic shouting his name with my phone in hand ready to call the local police. He was sitting in the car. It’s a good thing I have understanding neighbors.

We’ve instituted many, many safety measures to secure our home and Max since these occurrences. Safety locks for the doors, window alarms, seatbelt buckle protectors, because, yes, he’s even tried to flee from inside the car — while I was driving it! 

Thanks to my friend, Brittni, who works as an intervention specialist and a swim instructor, Max learned to swim at a young age. Since then I have not feared, as so many families do, that Max could wander and drown in a body of water. I do, however, fear he will again quietly slip out a door and make his way down a street. Max seems to have no fear of traffic. We’re working with him on crossing the street and waiting for cars, but he has yet to grasp the concept.

Through a wonderful camp that teaches kids with disabilities to ride two-wheel bikes, Max learned to ride this summer. It has given him confidence and a feeling of independence. As an almost-10-year-old, his desire for independence continues to grow, as it should with every boy his age. However, I fear as he gets older and wants even more independence, these situations may continue to arise.

When he was 7 and tried to take that walk to the park, we were lucky. My friend, William, just happened to be driving down the street on his way home from work and saw Max taking his stroll. He pulled over and scooped him up in his car and brought him back to me. We’re lucky William saw him and not some stranger. We’re lucky the cars that passed him didn’t hit him. We’re lucky he didn’t bolt into an oncoming car.

When she was the first lady, Hillary Rodham Clinton wrote a book called “It Takes a Village.” The title was based on this African proverb: “It takes a village to raise a child.” Autism families can attest to that indeed. My helpers are pretty darn solid, and I live in a village of tremendous neighbors with a fellow autism mommy just two doors down from me.

So far we’ve been lucky, but I don’t want our luck to run out someday. I’ve been researching the plethora of new personal tracking devices that have hit the market recently to figure out the best one to keep Max safe and to prevent a wandering incident. The process is overwhelming as the choices seem endless.

I’ve heard good things about SafetyNet by Lojack and Care Trak, which networks with your local police, but I was hoping to keep it simple. I want something that alerts me or his caregiver if he goes beyond a certain boundary: the yard, the playground, 500 feet away. A few other moms recommended AngelSense, PocketFinder and TrackR, which all track through a GPS app on a smart phone. I’d love to hear what The Mighty readers out there are using and hear how it’s helping to safeguard their family members.

Maureen Crotty the mighty.1

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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 “Share Your Story” page for more about our submission guidelines.

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This Poet Wrote an Ode to the Drug She’s Not Ashamed to Take

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It started with poetry about everyday objects that often go unnoticed. But soon, poet and singer-songwriter Shira Erlichman found herself fixated on one object in particular that certainly doesn’t get a lot of public affection — lithium.

When I finally found lithium (See? Doesn’t this already sound like a love story?) it was as if my head was emptied of fog and an internal gentleness/clarity ensued,” Erlichman told The Huffington Post.

Now, her “Ode to Lithium” series attempts to destigmatize mental health issues, lifting the shame that sometimes covers those who use medication to treat mental illnesses.

“Stigma creates a climate of silence, shame, and death. When I say death I mean death,” she told HuffPost. “People suffer alone until they can’t bear it, and then they break. Stigma perpetuates a cycle of private struggle and risk.”

Watch the first poem in her series, “Ode to Lithium #1,” below:


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20 Confessions of a Special Needs Mom

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When my children were born, I wished I had a guidebook for each one. The first year of motherhood would have been much easier. I would have spent a lot less time worrying about a fever or fretting about how to curb tantrums. I could turn a page and I would have all the answers to each child.

No doubt my child with special needs would need at least three manuals: one for his primary diagnosis, one for autism and one for epilepsy. I would also need some additional emergency books titled, “What Kind of Seizure Is This?” “Why He Won’t Eat” and “The Complete Guide to Sensory Issues.” Autistic meltdowns would require a complete desk set. Sadly, no such manuals exist.

Navigating parenthood is rewarding but also scary. Figuring out how to be a good parent takes trial and error. I have made my share of mistakes, especially with my child with special needs. I don’t have all the answers to my child’s medical and behavioral issues so it can be hard for me to be honest about the mistakes I have made as a parent.

1. I have made assumptions on the behalf of my child. There have been times I have not allowed my child to participate in an activity because I didn’t want to have to deal with the possible anxiety he would have. Sometimes this is necessary. I know him best and often get frustrated when others insist he do something when they know very little about him. In turn, I have also denied him the opportunity to find out for himself what he wanted to do.

2. I have sheltered my child. I have kept my son inside or away from activities for my own benefit. I have been afraid of the stares an autistic meltdown would draw in public. It has taken time for me to build confidence and know I’m strong enough to handle whatever might happen.

3. I have underestimated his abilities. Sadly, I had already determined he would never be able to do things like communicate efficiently or write his name. I was so convinced I was right about things like this, I would fail to push him to pursue certain goals. He has proved me wrong. His vocabulary has exceeded my expectations, and he can independently write his name.

4. I have played out his worst case scenario. Instead of thinking he could be independent some day, I have determined he would always be living with us. I think maybe I want to protect him as long as I can, but again, I shouldn’t set limits on his potential.

5. I have distanced myself from him. I know this is normal, but I have taken his outbursts toward me personally. I frequently forget he is at the mercy of his disease and the side effects of multiple medications.

6. I don’t always let him fight his own battles. I’m guilty of this with all my children. I intervene when I should let him try to work problems out on his own. Sometimes, I need to step back and allow my children some trial and error of their own.

7. I talk about him as if he isn’t in the room. This is something I promised myself I’d never do. I can’t assume to know he doesn’t understand what I’m saying. I have to be careful not to make him feel like we are not including him in conversations.

8. I haven’t always been patient with him. Patience comes with practice, and I have had plenty of opportunities to practice it.

9. I also have failed to be consistent with the way I handle things. I haven’t always stood my ground when he demands something in an inappropriate manner.

10. He needs structure and I haven’t always provided it. Sticking to a routine is hard for me. I have three other children and my son with special needs sometimes feels like two kids rather than one. It’s easy to get overwhelmed.

11. I have been lazy. There are days where my life exhausts me. I let this be an excuse when we do only what’s necessary.

12. I have put my needs before his own. I know my well being is also important and I do need to make time for myself, but any time I do so, I feel guilty about it.

13. I have wondered if I love him. I have made so many mistakes and have failed so many times that I wonder if I truly love him. Then I think about him and I feel how deep our love really goes.

14. I have given up. Yes, I have thrown in the towel on more than one occasion. I’m human and I get frustrated. He works so hard to grasp a concept and then his seizures increase, or we do a medicine change and he regresses. It’s hard to keep trying when we have to keep going back to square one.

15. I have failed to see the bond that has formed. Adversity really does strengthen a bond. We have been through a lot together, and I wonder why he likes me so much. I feel like I have failed him two times over. I feel like I have failed him as a typical mom and a special needs mom. It almost feels like I have the potential to make double the mistakes.

16. I have been a “helicopter” mom. There are times I would sit on his shoulder if I could.

17. I wish I knew what joy this experience has already taught me sooner. It is so hard to explain this to people who don’t have a child with special needs. I don’t want any of the difficulties for my son, yet he has taught me so much about life in such a short period of time.

18. I forget how much he has working against him. I have been frustrated when he can’t grasp what seems to be simple concepts. I forget to look at things from his perspective.

19. I have to keep reminding myself his age on the outside doesn’t match the age on the inside. I must remember to consider his developmental age and stop expecting too much from him too soon.

20. I am overly emotional. I know it’s hard for other people to understand why it’s a big deal when he independently wrote his name or put together a complete sentence, but it is for us. Learning is often an uphill battle for him, and we celebrate his victories.

My son is amazing and I love him deeply, even when one of us, or both of us, are at our worst. The responsibility of raising him and my other children is something I don’t take lightly. That may be why I hold on to so much guilt when I do fail. I want to be the best mom I can. This means I have to be honest about the mistakes I have made and learn from them. There is always a time to get real, try harder and give him the best of me.

Follow this journey on CrossRoadTrippers.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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 “Share Your Story” page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Dear Autism Parents, I Don’t Know Your Story, but I Know You Need This

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Dear Autism Parent,

Having a child with autism myself, I imagine this road hasn’t always been easy. It’s a road that often can’t be fathomed unless there are fellow travelers.

But traveling the same road is not the equivalent to having the same journey. I can’t begin to know what your days, hours, minutes and seconds are like. Autism may be the line that connects our dots, but our challenges and how we persevere changes the dynamic a bit and causes our stories to differ.

I can speak about my child and the successes, the falls, the fears, the dedication, the bottomless pits and the brighter days. I have four sons overall. It can be challenging to care for all four, especially when the needs of one of them are more. So I don’t know what it’s like to walk in your shoes. I can’t tell your story.

But what I can tell you is parents with children with autism need support. We need encouragement. We need to feel like we’re not failing even though signs of improvement are nowhere in sight. We need someone to listen and not feel like they have all the answers. We need someone to care and someone who “gets it.” No explanation needed. No judgment. Just someone who understands.

Well, I get it! And without ever meeting you, I applaud you for being a remarkable parent. Your strength, courage and tenacity are to be admired. And yes, every mom and dad should step up to the plate because that’s what you do when you’re a parent.

However, sometimes the reality can be too great, and some may find it easier to walk away. Optimism can be hard to find when the days and nights intertwine.

So on behalf of your child, thank you for staying. I know it’s tough. I don’t think any journey is meant to be a piece of cake, no matter how hard we pray for it to be. Nevertheless, this walk we take makes us stronger and more determined to make sure the needs of our children are met.

This doesn’t mean your strength won’t be depleted during your journey. You may even have a meltdown yourself from time to time. But don’t ever think your work is in vain. Don’t think your words are empty. Don’t think you’re not being effective. And please do not think that hope is lost.

The fact that your children are still here has so much to do with you loving them, believing in them and never giving up on them. The truth of the matter is no one can do what you do and get the kind of results that have professionals scratching their heads in disbelief.

No one is more dependable, no one is a better advocate and no one knows your child better than you. Although exhaustion, fear, confusion and, at times, discouragement may encompass you daily, look at your child and know this fight for accommodations, for quality of life and for just getting through the day are beyond worth it.

I’m here to give you this: A high-five, a pat on the back and a thumbs up. You’re doing a great job! The possibilities are endless, and my hope and prayer for you is that you find acceptance, progress, achievements, miracles and much strength and appreciation along the way.

From the heart of one autism parent to another,

Portia

Portia Dawson the mighty.2-001

 The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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 “Share Your Story” page for more about our submission guidelines.

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Why I No Longer Hide the Equipment I Need to Manage My Diabetes

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It took a transit at the airport in Istanbul, Turkey, to prompt me to change my mindset about my chronic disease. I’ve had type 1 diabetes for 16 years. The thing about being born with a disease or diagnosed at such a young age is that you grow up accepting whatever your parents tell you about it. If they’ve got fears and insecurities, you might adopt them. If they feed you positivity, and courage, you might grow into them, too.

Throughout those 16 years, I did three insulin injections per day. I’d never do them in public – I always went to the bathroom to do it. Only at home was I permitted to do it wherever I was at. It was normal for me.

You wouldn’t think that’s so bad, but it didn’t help my suppressive attitude toward a disease I’ll have to live with for the rest of my life.

In 2011, coming back from a family holiday in Greece, we waited for our next flight at the Istanbul airport. After we finished our dinner, I had to do my injection. As I got the kit out, my mom pointed to the man at the table opposite to us. I saw he had the exact same flexpen as I did, and he was doing his injection out in public, on the right side of his stomach. When I looked up to see what she was describing, he just finished his injection and was pulling the small needle out of his stomach. I watched.

Even though I still went to the bathroom to do my own injection after that, I remembered what my mom described, what I saw. And I wanted to learn from it.

The next time I had to do my injection, I told my parents I wanted to do it in public. No more hiding in toilets or changing rooms or whatever. No more.

That stranger changed my outlook on diabetes.

I don’t blame my parents for my previous outlook – they were just doing what they thought best to protect me. But I’ve grown up now, and it’s still my disease.

I’ve recently switched to an insulin pump, which allows for better blood glucose control. On our way to an extended family reunion, my dad made a scene about the cropped plaid shirt I chose to wear. You can see the “site” where the insulin pump connects to my body. He didn’t want it to be exposed in public.

But if you see it from this perspective: during a meal, I don’t ask you to go to the bathroom every time your pancreas is producing insulin to allow glucose to be absorbed from your bloodstream, so why must I hide my insulin intake?

If people stare, that’s their business, not mine. Constantly hiding the equipment I need to manage my disease is forcing me to hide a part of myself that’s brought about some of the best moments in my life. I’d prefer strangers’ questions over any incorrect silent assumptions any day.

To anyone else with diabetes out there, please know this: Your daily diabetic routine, whether it involves injections or pumps or otherwise, doesn’t make you inferior. It’s OK not to want to display this routine in public sometimes; it’s OK if you want to hide it from certain people if that’s your decision. But don’t let those who don’t want to see it make you feel like a part of you is unworthy of acceptance.  Diabetes (however long or short one has had it) is an integral part of all of us, and like any other characteristic, it needs to be wholly accepted in order for us to move forward.

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 “Share Your Story” page for more about our submission guidelines.

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As a Mom of a Son With Special Needs, I Beg You to Have ‘the Talk’

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This summer is the first summer Baker has been 3.

Silliest of statements, I know. Of course this summer is the first summer Baker has been 3. Hear me out.

Three-year-olds get to play with the big kids. Three-year-olds are no longer considered babies and given the grace babies are given.

Babies are allowed to sit quietly. Babies are allowed to keep to themselves. Babies are allowed to play in their own safe area.

There are no expectations surrounding play with babies, except that babies will be babies. Babies do what babies do.

Last summer, and the summer before, and the summer before that, Baker was a baby. This summer is the first summer Baker has been 3.

This summer is the first summer Baker has played with the big kids.

This summer is the first summer Baker’s play has been laden with expectations of looking and sounding a certain way.

This summer is the first summer Baker has been noticed as different.

Before, Baker could sit on the sidelines. He could bounce on my lap and giggle and coo to everyone’s delight.

Before, Baker was a baby. Before, it was OK Baker could not talk, could not run as quickly, could not jump as high.

Before, none of the other kids saw Baker any differently than they saw their baby sister or little cousin. He was a baby (and a darn cute one). He did what babies did. Because of his different abilities, some of it came at a slower rate and took much greater effort. His hypotonia caused his chubby little legs to frog out when he slept and his little body to collapse into mine, winning him all the awards for world’s greatest snuggler. He was a baby, and everybody loves a baby. Especially Baby Baker.

This summer is the first summer Baker has been 3. And because of that, this is the first summer our little sphere has been expanded. And because of that, two things have happened to this momma’s heart: it has experienced both unspeakable joy and unspeakable ache.

My heart has threatened to overflow watching Baker create new friendships. I’ve been so encouraged listening to other mommas enlighten and empower their children with knowledge about Down syndrome as questions have presented themselves about why Baker’s play and talk differ from their own. I’ve loved watching the innocence of children, as they love with their whole heart, without judgment and with unhindered acceptance.

My heart has also threatened to shatter into pieces as I see other children notice Baker’s different abilities. “Is he special ed?” one asked innocently. Others can’t understand his fascination with perfectly folding all of our beach towels instead of bounding down the slide like all the other children. Why, when their conversations flowed as easily as lemonade on a summer day, did Baker prefer silence? Why, when he does speak, does he often do so first with his hands and then with words that sound so differently than our own? Why does he often drift to the perimeter when all of the action is in the center?

Why is he different than me?

Could you answer that question?

Little more than three years ago, I would have stuttered through it, preferring to brush it under the doormat or opting to combat it with the eye that commanded silence instead of opening doors to a conversation of acceptance.

As the mom of a seriously great kid, who happens to have unique needs, I beg you to have the talk. The talk about likes and differences, and how often we’re more alike than different.

If you need a name, use Baker. If you need a face, I think his is pretty perfect. If you need words, use a picture book (spoken like a true teacher, ha!). I love “We’ll Paint the Octopus Red.”

Your children won’t mind if the words aren’t perfect or eloquent or include textbook terminology. They can be simple and succinct and from the heart.

From the bottom of mine, thank you.

More than you know, thank you.

Photo credit: Katie Thompson Photography

Follow this journey on Our Dream Come True.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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 “Share Your Story” page for more about our submission guidelines.

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