How We've Made Our Marriage Work as Special Needs Parents

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I saw a birthday card the other day that read “Growing old ain’t for cowards.” I think the same goes for marriage  – probably any marriage – but especially when parenting a child with special needs. Our daughter, 15, has an autism spectrum disorder, and she has three younger brothers who cause mayhem. While we are fortunate to share a deep faith and commitment to each other and to be surrounded by a supportive circle of family and friends, given the statistics on marriage in general, some days it’s a wonder we are still together.

When Erin turned 13, I wanted to hit the pause button. Seeing her growing up so fast while still dealing with the challenges of her disability made me long to stop the clock. As my marriage approaches its 18th year, (“almost an adult,” a friend noted) a part of me feels the same. We’ve made it through our fair share of “for better or worse” – who wants to “grow up” and see what “sickness and health” lays ahead. Let’s just stay here.

Looking back on those two people exchanging vows on a late September afternoon nearly two decades ago, I see how naïve they were. Let’s face it – as all seasoned couples know, when you’re standing before your friends and family making promises, you really have no idea what you are saying. Who the hell can know what “for better or worse” means when your greatest concern at the moment is making it back down the aisle without tripping? They are just words, and you have to say them to make it official and get on with the party.  That’s not to say you don’t mean them, but you simply cannot know how to love someone in good times and in bad until you are actually muddling through the s***storm with them.

Three months after our wedding, those words manifested in a move to a foreign city in the middle of a very dark winter. Shortly after, a miscarriage morphed into months and then two years of trying to
have a baby.  We thought maybe it wasn’t meant to be – it’s fine, we’re OK – and then the “for better” appeared – a baby, a girl, a little on the “colicky”/doesn’t sleep side but a beautiful baby nonetheless. Then, wow, a second – that was fast. How did that happen?  Life is good – two kids, a girl and a boy – fancy that. Who would have thought? Then a diagnosis – developmental delays, cognitive and motor impairments, sensory issues. Turns out that wasn’t colic.

You wonder how you’re handling it, and then you realize the hardest thing you’ve ever faced is also happening to someone else — the person you married. Someone with an exceptionally kind and patient heart, but who is different from you in many ways. You have to figure out how to carry this thing together without dropping it or breaking it or shattering yourselves in the process. Sometimes you hand it off to each other. Often I am the one diving in – reading the books, meeting the specialists – and it’s easy to feel like I’m carrying it alone. It can be easy to go down that rabbit hole and convince yourself that’s the case.

When I need him to be there, though, he shows up. He cancels meetings and rearranges travel when I can’t see one more doctor or therapist alone. When I need someone to witness the raised eyebrows,
the somber, apologetic, or brusque tones, he is there. Even then, though, I don’t always let him off the hook – largely because I am profoundly sad (and exhausted) and it feels the only thing I can do with this weight is to hand it off to him in the form of anger – anger at him for not being around enough, for having to take off so soon when he does show up.

In those early days, a good deal of irrationality entered the picture as we processed the fact that things had turned out so very differently than planned – not that we had planned anything at all. We just thought we’d get married, have a kid or two or three and deal with the usual stuff: bruises, breaks, scrapes, stitches. You know other possibilities are out there, but they don’t enter the picture when you’re standing on that altar or holding your newborn. You feel you and your husband are so incredibly capable of making this work – of protecting them – that nothing is going to touch them, or at least nothing you won’t be able to fix with a glass of water, a Band-Aid, or maybe a quick trip to the ER. Then we’ll be on to the “for better” again before we know it.

It doesn’t work like that. We all know this. We were not new to the world when we made those vows. But maybe that’s the beauty of a couple speaking those words in a suspension of disbelief, a willingness to put on hold what you know to be true, which Wikipedia notes, is “essential for a magic act or a circus sideshow act to succeed.” Sometimes our marriage and our family feels very much like a circus act, and more than a little magic – and sense of humor — is involved in getting us through our days.

Shortly after Erin’s diagnosis, Bill took to checking in daily with the question: “So what’s the crisis of the day?” I never fail to deliver. Often it’s small – the boys have pinkeye or we can’t find the pink tie-dye shirt and our daughter refuses to get dressed without it. But sometimes it’s something more, like the other day when she put her fist through a window pane in a post-seizure haze.

A few months after we moved back to the States and were staying with my parents, Bill called several times without an answer. When he arrived home to flames shooting out the kitchen window and six fire engines lined up in front, he saw why. I was relieved to see him and to share the day’s catastrophe, and he was happy to find us standing on the sidewalk, safe.

Maybe that’s what makes a special needs marriage, or any marriage, work. Understanding and accepting that sometimes it just doesn’t. Adapting to a constant redefinition of terms, of words, of good days, and what constitutes a crisis for better and for worse. Realizing that though you said you’d love this person no matter what, some days there’s no love left in the tank, and that’s OK. Regardless of what the “experts” say, sometimes there just aren’t enough hours in the day not to go to bed angry and unresolved. As long as you understand that what you’ve committed to is a process, a work in progress and that this work in progress takes a fair amount of work, understanding and faith, you might discover that even if the house burns down, you could not be more grateful to find this person standing beside you and your circus, safely on the side of the road.

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To the Police Officer Who Helped My Autistic Son

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I was sitting on the sidewalk when I suddenly realized you were standing over me. Well, not directly on the sidewalk: I was sitting on top of my kicking, screaming, 10-year-old son. I thank heaven you were the police officer who came to the scene.

We were in the heart of downtown Vancouver, at the beginning of rush hour. Business people were streaming past, staring at our little wrestling match. I’ve learned to ignore the stares because they keep me from doing my job: keeping my autistic son safe when he’s melting down.

On Wednesday, a meltdown began after my refusal to let him watch YouTube on the way home from school. After-school YouTube time has become an important part of his transition back to school: after two years of homeschooling, he’s back in school full time, and the prospect of end-of-day YouTube helps him push through the days when his anxiety makes it hard to go to class. But on this particular day, he’d refused to go to class at all, even when I reminded him that would mean a YouTube-free afternoon.

He regretted that decision as soon as the school day ended. Just as he was getting in the car, he asked to watch YouTube on my phone, and as soon as I refused, he screamed and jumped out of the car. I chased him through the parking garage, catching up to him just as he reached the elevator. Tears streaming down his face, he begged for his YouTube time. When I pulled him out of the elevator and back into the garage, he lay down in the middle of the car lane.

I stood over him, so we’d be visible to any drivers, until he was ready to get to his feet. He seemed calmer, so when he walked back to the elevator, I guessed he was heading to his dad’s office just across the street. I followed him into the elevator, up to the office lobby, and out onto the sidewalk. It wasn’t until he was almost at the curb that I realized he was trying to run into the street. I reached him just in time. He tried to tug away, back towards the street, so I pulled him down onto the sidewalk, where I could hold onto him while calling my husband for backup.

Thankfully, these moments of existential despair don’t come around often — maybe only every month or two. When they do, it takes all my emotional strength to hold fast to whatever limit-setting has played a part in my son’s meltdown. I know if I relent in the face of his threat to hurt himself, it could become an instinctive threat, and even more dangerous, a habitual thought pattern.

As our son has grown bigger, these situations have also taken a lot of physical strength. He’s now too big and strong for me to restrain with just my arms, so if he’s threatening to hurt himself, I have to pin him down. More and more often, I have wondered whether I will have to call the police to help. But I’ve been terrified to do so because I’m worried about scaring him  —  or getting into a conflict with law enforcement.

When I looked up to see a uniformed officer standing over me, I briefly thought those fears were coming true. But the police uniform and buzz cut framed the face of a kind, concerned woman.

“Is everything OK?” you asked, in a voice that was miraculously free of judgment.

“My son is autistic,” I explained. “He just tried to run into the street.”

“How can we help?” you asked.

“I just need to keep him safe until his dad gets here.”

You knelt down and spoke to him in a quiet, calm voice. You offered him a sticker, and you didn’t blink when his response was, “leave me alone!” You just kept speaking to him quietly while your partner, also a woman, stood watch over the three of us. Your police car was stopped in the middle of the road, lights flashing, but neither of you were trying to rush us to a resolution.

“He’s upset because I won’t let him have YouTube, but I can’t give in,” I explained, and you nodded in a way that told me you got it and that what I was saying made perfect sense. I was smiling despite the chaos  —  because if I didn’t see the humor of a wrestling match on a rush hour street, how would I survive? —  but from the way you looked at me, I knew you were seeing a mom who took the situation seriously.

When my husband answered the phone you gently took over the job of restraining my son… something no public servant has ever dared to do. We’ve had teachers and support workers tell us they’re not allowed to touch a child, even when it’s a matter of keeping our son safe. But you held him firmly and respectfully, as gently as you could, without a trace of anger or fear on your face.

“I have a lot of experience with autistic kids,” you told me, and it showed.

When my husband arrived he took over the job of helping me restrain our little guy, who was still kicking and screaming.

“Is there anything else we can do to help?” you asked.

The only thing I wanted was your business card so I could send you an email. If I do have to call the cops in the future, I would love your notes and name on our file. But it took another 45 minutes before our son was calm enough to get in the car and go home, and by the time we got there, I had lost your card.

I know how lucky I was to get that kind of police response: as a white, middle-aged, middle-class woman, I got the benefit of many possible doubts about why I was holding my kid down on the sidewalk. I also felt incredibly grateful for our recent autism diagnosis, which makes the situation much easier to explain.

But what made me feel really lucky was encountering you, a police officer who approached our family with concern and calm. You were kindness, and for my son, you were safety.

And sometimes safety is the one thing I fear I can’t provide my growing boy. It was great to know that in that particular moment, somebody had my back. It’s what every parent of a child  with special needs —  every parent, period  —  should be able to count on.

Update: The Vancouver Police Department helped me find our helpful officers! A huge thank you to Constables Karma and Jackie.

This post originally appeared on Medium.

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Image by British Columbia Emergency Photography

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'How Autistic Are You?' Don't Ask Me That!

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You are asking the wrong question.

I hate talking face-to-face about my autism to people who do not know me. I get comments like, “Well you must be one of those ‘higher-functioning autistics’ – since you have a house and a good job. Your life looks great. There is nothing wrong with you.”

In general I am a pretty happy and positive person. I’ve worked hard to learn to love myself as I am and have made efforts to eliminate all negativity and bad people from my life. I smile all the time, even if I am not feeling well or having a bad day.

Technically my smile is more of a grin or smirk – no teeth. If I force teeth it’s like that scene from the movie “The Terminator” where Arnold Schwarzenegger tried to learn how to smile. I wish I was exaggerating. I can smile with teeth if I am genuinely happy about something, but this is one thing I cannot fake.

What they don’t see are my struggles. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they?

Growing up undiagnosed, I learned to hide these things. Nobody sees me freaking out, knows when I am having stomach issues or if my head is pounding from the florescent lighting of the office I work in two to three days a week.

I don’t complain. I smile, push forward, pull up my big girl panties and do what I have to do to make sure I am able to provide the best possible life for myself. I have a good job because I work hard.

My mother allowed me to start working at the age of 12. I started out with jobs like cleaning. She told me to always stay busy, find something to do. If I am on the clock I need to find work to do. So I did.

I put my heart and soul into everything I do — that is why I have a nice home and a good job — not because I am a “high-functioning” autistic. Honestly, I am not a fan of these high and low-functioning labels.

People say I am high-functioning because I have well-developed coping mechanisms, which basically means I keep all my struggling hidden to myself to make neurotypical people feel comfortable. Because I can pass for “normal,” blend in and be one of “them,” I must be high-functioning. How offensive!

Please do not ask autistic people (or their parents) how autistic they (or their child) are (is).

This would be the number one question on my list of things not to say to or ask an autistic person.

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The List of Waiting Lists You're Put on When Your Child Is on the Autism Spectrum

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No matter where your child is on the autism spectrum, you have probably experienced having to put him or her on a waiting list at some point for some type of support. Whether it was to get in for a diagnosis, to go to an out-of-district school for those with learning disabilities, and/or, when your son or daughter has reached adulthood, to receive state-funded day services and/or vocational rehabilitation programs.

If you ever go on social media you are probably only a few minutes away from a wine or coffee meme from one of the members of our autism community because of these lists. Waiting lists are awful. Depending on the state you are in and what funding is available, a waiting list could last a few days to even years.

My parents experienced those waiting lists again and again during my adolescence. It took my parents 18 months to finally have me receive an autism diagnosis when I was 4 years old. Then there were also waiting lists for me to get into a school that specialized in those with learning disabilities. The list of waiting lists goes on and on.

When I think about that long road from then till now I often think how my parents’ preparation really made all the difference. That’s why I can’t advocate enough for planning ahead! As I learned from a Transition Tool Kit I read at AutismSpeaks.org, there are more people with autism currently waiting for things such as appropriate supported living settings than there are openings in those settings. It brings the whole question of, “What happens when the school bus stops coming?” to a whole other level.

When you are planning ahead I recommend reading more about what your state provides in terms of therapies and supports for those with disabilities. Fill out all appropriate waivers and forms as early as possible and keep yourself ahead of the game.

Finally, while you are on those waiting lists, regardless of what point you are at in your child’s development, remember to advocate for others in the special needs community. Advocatingfor legislation specifically focused on our community can result in huge dividends. Word of mouth has moved mountains in the past, and we can do the same for the causes that are important to us. Become an advocate and champion for us, like my parents did for me.

It can change so much for our loved ones.

Autism Speaks’ Transition Tool Kit is designed to assist families of individuals with autism on the journey from adolescence to adulthood. You can read more about the tool kit here.

A version of this post originally appeared at KerryMagro.com.

Image by notwaew

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When Anxiety Affects My Son on the Autism Spectrum

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My son is on the autism spectrum and has ADHD. He is a sweet, kind boy who loves to make people happy. But lately, his emotions are getting the better of him, and he has lost the ability he has to self-regulate those emotions.

We got a puppy about two and half years ago named Fergie. She is an adorable cockapoo. We got her for our son. We wanted him to have a buddy, a pal, a friend who would be there unconditionally. He liked her but didn’t want to get too close to her for a while. Like, he likes that she’s there, but she can be over there, and that’s totally fine. It’s kind of similar to how he feels about people. It made no difference to us, though — this was a relationship he could create on his own terms without anyone feeling badly.

But then, after Fergie got out of our backyard gate one time too many, my son began to worry. A lot. Any time anyone went for the door, he would panic. He would try to block the pup from getting out, but in the process he would trip, or cause someone else (like the person trying to leave or enter the house) to get caught up in his steps. He would yell. We would yell. He would slam the door before the person was in or out. It was a mess.

He would ask to check the gate to the backyard relentlessly. He would not let the dog go out without checking the gate first. No matter what we were doing. No matter what he was doing. This was the most important thing to him.

About six months ago, we started seeing a psychologist who works with kids on the spectrum. Not because of the dog stuff specifically, but there were a number of things mounting, including the development of self-awareness by our son, that he is different. Up until now, he had never really asked or talked about his autism. With self-awareness came sadness. The moment you realize that you are different is not as easy one. There were questions and concerns. There was self-loathing, anger and frustration. There was resentment. It was more than I could help him with.

Fortunately, my son and this doctor connected right away. But the anxiety was not subsiding.

So what do we do? How do we help him?

For starters, we continued to seek the guidance of our professional. We came up with some ideas on our own: He can check the gate no more than five times a day. We allow him to ask us where the dog is as many times as he wants, which seems to soothe him. He doesn’t come running and looking for her all the time. He will be reading or playing, or practicing piano or violin in another room and just call out and ask where she is, without interrupting his life. Which is improvement. For all of us.

But then, last night, we were upstairs, and the kids getting ready for bed. My husband was going out. Our son was at the top of the stairs and heard the door and panicked. The dog was right next to me on the landing at the top of the stairs. She perked up when she heard the door open but didn’t move much. She was not planning on going anywhere, you could tell. But that didn’t register with my son. He ran to the middle of the staircase and tried to hold her back. The front door was still open because my husband was worried his son was going to fall down the stairs. We both told him to get off the stairs, and he yelled back at us, “The dog! The dog!” I yelled, “Get off the stairs!” and told my husband to go because I wanted the door closed. I got my boy onto the landing. He cried and said through his tears, “I’m sorry! I just don’t want Fergie to run away.”

I gave him time to calm down. I spoke softly and asked if I could talk to him. He said he wanted to say something.

“Go ahead, but then it’s my turn, OK?”

“OK.”

He calmed down, still fighting back tears with his mouth tensed. My heart broke. My boy. My baby. But he said nothing.

“What?” he asked.

“You wanted to say something to me first,” I said.

“Oh. I’m sorry. I’m so sorry but I just don’t want anything to happen to Fergie.”

“I know, honey. Can I talk now, buddy?”

“OK.”

“Honey, Fergie is our dog, but you are my son. My job is to protect you—”

“But what if Fergie got away?”

“If Fergie got away… it would be hard, but we can get another dog—”

“I don’t want another dog.”

“And we’re not getting another dog because Fergie is safe and sound right here.” (At the sound of her name, Fergie is now smothering him with kisses upon kisses.)

I held his hand and continued.

“But I can’t replace you,” I said, putting my hand on his heart.

He shook his head and looked up at me with the huge pools of love and hope that are his eyes and smiled.

“I love you, buddy.”

“I love you too, Mommy, but it’s just my autism. Does my sister have autism?”

“No.”

“How do you know?”

“Because doctors know how to tell.”

“Oh.”

“I wish I didn’t have autism. It makes me say things and it makes me be mean.”

My boy is not mean. But my boy does have autism. And he is realizing what that means. It means that he is rigid sometimes and that he is not always aware or sensitive to other’s feelings. And this is where, I think, it may get hard.

What happens when self-awareness, anxiety, ADHD, autism and hormones all want to be center stage? I hope the help we are getting does help. I wish for my boy to get some peace. I pray my boy can get through the next couple of years unscathed, and that when I look in his eyes, I will always see his baby face. All innocent and full of hope and dreams. And that he is still smiling, and silly, and with tons of love in his heart for the world to see.

Follow this journey on My Special Boy.

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Shopping in a video game store.

When a Stranger in GameStop Overheard Me Say My Daughter Is Autistic

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My older daughter and I were shopping at the mall, looking for a birthday gift for my younger daughter. We wandered in to GameStop, and were greeted by an employee who asked if he could help us. We kind of shrugged and said something along the lines of, “We don’t know what she wants.”

I explained that my younger daughter is autistic and that we were shopping for a birthday gift for her tenth birthday.  At that same time, a customer standing there suddenly blurted out that he was also autistic, and began talking to us, giving us advice on what to get for an autistic person. The employee smiled and walked away after seeing that we were comfortable with the customer.

The customer suggested a Nintendo handheld system with certain games that help with socialization and/or developing skills, and went into detail about how they can help people with autism. He then showed us the games and the different systems, and gave us the pros and cons of each system. He really knew his stuff!

After about 15 minutes, the employee returned to where we were standing and asked if we had any questions or if we had our questions answered by the other customer. I let him know that the other customer was fantastic and very knowledgeable. At that time, the customer let me know that he had applied for a job at GameStop and was just waiting to hear. I told him I would put in a good word for him. He then went on to discuss his experience with the various agencies in my area, and how he had benefited from them, and that my daughter might benefit as well.

I sincerely hope that GameStop hires this young man. He was able to talk to me about my younger daughter’s potential likes, dislikes, and social needs on a level that a neurotypical person simply could not. We need our society to embrace, empower, and employ people of all abilities.

I have always been very open about my daughter’s diagnosis, and occasionally I have wondered if this was the right thing to do. My daughter isn’t just autistic… she’s smart, funny, and beautiful, and has an energy that is like no other. But autism is a big part of who she is, at least to me. It’s led me on a journey to a whole new world. I have met some of the most fantastic people ever, and I’ve learned who my real friends are. I’ve learned to appreciate the little things.

And yes, in case you’re wondering, we did buy the gaming system he recommended.

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