To the Parent Anxious Over the Future of Your Child With Autism

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Dear concerned parent,

As I look at you I see the love you have for your child.

I see the willingness to want to do the very best.

I see compassion.

I also see pain…

I was once your child.

I now want to be your child’s voice.

So, please listen.

I know at times it isn’t easy for you to understand me.

I feel the same way about you.

I know sometimes it seems like I’m not listening.

It’’s only because I am concentrating on what you’re trying to tell me.

I feel your frustration when I repeatedly do something and you don’t understand why.

It’s just that I’m trying to express myself, and for now, I don’t have another way.

I see your sadness because I can’t accomplish a task you think I should.

But I laugh many times doing things you don’t see.

I hear the anxiety in your words when you speak about me

I wish I had the words to tell you you don’t need to be anxious.

You see all the roads that lay ahead, and you worry.

I see all the journeys that have led us here, and I smile.

You cry for the life you wanted for me and all the sorrow I will have.

I’m delighted with the life I’m living, and I’m dreaming of all I will be.

Please do not look at me as less.

Please do not look at me with sorrow.

Please do not underestimate my abilities.

Please do not believe I’m limited because I have limits.

Your belief and faith in me are my strength and shield.

I’m so much more then what people may see or hear.

I’m a million happy moments, and I’m a million opportunities waiting to happen.

You just need to believe.

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To the Parents Still Recovering From Their Child’s Meltdown

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Here’s what happens in our house. Child has meltdown. Get child through meltdown. Child OK in the world, sometimes it’s like nothing even happened. Other times child is completely “off” the rest of the day. Me, on the other hand — I’m “off,” completely fried, feel like the world has ended and I’ve just ran a marathon.

Emotionally, it’s hard to recover as a parent. You’ve just witnessed an epic emotional, physical explosion in your child you love so dearly. It’s taken everything you have to help your child get through the meltdown, so it’s no wonder you feel exhausted afterward.

A big problem for me has been experiencing PTSD (post-traumatic stress disorder) from our daughter’s aggressive meltdowns. While working with a new psychologist for our daughter, I got faced with having to work through some of this. Trauma stays in the brain. It’s really a challenge to work on.

Our daughter’s meltdowns happen less frequently now, but because of the aggression when she’s in the middle of a meltdown, when she comes toward me to hug me, my nerves shoot through the sky, and I start to push her away because my brain is thinking she will bite me or hit me. So I’m working on retraining my brain.

As a parent, what do you do to get through the fog of a meltdown hangover?

These are my five tips to fight a “meltdown hangover”:

1. Make time for play. Engaging in silly, goofy play that connects you and your child can almost start a chain reaction for both of you. It’s a hard thing to initiate, but it’s worth the effort if your child has moved into the meltdown response of being OK. If your child is “off,” this is likely not the best move.

2. Chill together. Sometimes the best thing you can do is relax together. Snuggle up on the sofa with a good episode (or two or four). Grab some snacks and relax. (This is also a good time to sneak in a nap, mommas.)

3. Call for back-up and take a break. If you’re able to get a moment to yourself, it may be what you need. Sometimes after meltdowns, I just need to pull myself together, get a little self-care in and then I can move on with life.

4. Let go of the guilt. Oh, the guilt. This is tough for me, especially when our daughter bounces back quickly after a meltdown. Here’s what I’m going to say. Maybe you didn’t handle this meltdown perfectly, but you know what? There isn’t a meltdown manual out there. Did you make every effort to the best of your knowledge to help your child through their meltdown? OK, then quit the guilt and high-five yourself for your best effort. (Sounds harsh, right? But this is as much for me as it is for you, too.)

5. Shake it off. In the words of Taylor Swift, this is the best thing you can do. Meltdowns have a way of sticking around in my brain. Maybe it’s the trauma. Sometimes in order to recover, I literally have to push it out of my brain and pretend it didn’t happen. Shake it off and move on.

To the parents in a season of constant meltdowns: If your child has a meltdown from sunup to sundown, you’re going to need more than these five tips. You’re going to need a lot of naps, a lot of support and more patience than you know. And maybe even some coffee, chocolate and wine after bedtime (if you roll that way). For me, I needed the gym with childcare, and I would run and cry (seriously, wet, sloppy, running-mess cry), and no one was screaming at me for at least 20 minutes. It was heaven. I know from experience that it does get better — even if you don’t believe it will, it does. Hold on to that.

From someone who experienced several years of constant meltdowns, it does get better. Keep going, and don’t give up.

Follow this journey on Sensory Mom Secrets.

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A Last Goodbye: A Letter to Our Son

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I felt like I’d been telling you goodbye from the moment we met.

As soon as you were born, the nurse held you between your daddy and me for kisses, and then you were gone — on a plane to a big city two hours away to “The Wizard of Oz,” as I used to call him, the big heart surgeon who was going to fix your special little heart.

The next time I saw you, you were 2 days old. No scars yet. No oxygen. Perfect and pink. I finally got to snuggle you, with wires and lights beaming under your little blanket. We kissed you and sang to you. Waited for a plan.

Then it was time to say goodbye again, for your first heart surgery. I remember my knees buckling beneath me as they wheeled you away. You were so small in a sea full of people, taking you to the Wizard.

That was the first surgery. We said that same goodbye eight more times in five months. It didn’t become easier, just different. We knew what to expect. The knots in your stomach. The gut wrenching pain of knowing your child was going to endure pain. Praying the phone in the waiting room didn’t ring too early or take too long to ring with an update. Counting the minutes. Hours. Finally getting to see you being wheeled back down the hall, so small in a sea of people. Praying this time, this time is it. This is the last one. No more trips to Oz.

But then the final goodbye came. It was a goodbye we decided on together, you included. You couldn’t fight anymore. This was something you couldn’t fight, and I couldn’t bring myself to make you anymore. I held you as you floated away. The agony of feeling you child’s soul leave their body is everlasting. It’s embedded in your being.

I’m so glad I got to meet you. I was there for all your moments, all your triumphs, all your defeats. That was our last goodbye on earth, but I know one day we will be together and will never have to say goodbye again.

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What It Really Means When I Say ‘Because You Never Know’

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“Because you never know.”

We have rescue meds at school and in the diaper bag, but I asked the pharmacist for another refill and stopped myself when I felt obligated to explain why.

“Because you never know.”

I left it at that. He understood.

A friend of mine recently went away for a girl’s weekend and forgot her phone.  Her first response, like most people’s, was unease, but she quickly grew to love being disconnected and free. That would terrify me. My anxiety goes up when I realize I’m without my phone while I do a simple load of laundry. What if I miss the call? “The call” is seeing that dreaded number show up on your caller ID, your heart dropping and you answering with fear in your voice. Before the person on the other end even says anything, you’re already planning the quickest route to your child. What a relief it is when it’s just a therapist calling to discuss new ideas.

“Because you never know” means canceling your plans for the day because you feel something is off and you need to be able to get to your child in a heartbeat if you get the call. It means always being on call, never having a moment of true relaxation because in the back of your mind, you know you could get the call.

Nothing is simple. Nothing.

“Because you never know” means determining if attending a friend’s dinner or playdate is even worth the planning, stress and possible seizures. It means there’s no “get up and go” for our family. A simple outing is not simple.

“Because you never know” means we determine which opportunities for life experiences are worth the risk. Sometimes we push it pretty far because we want her to enjoy every second of this life she has. Because you never know…

It’s the unrelenting fear, every night, of what the next morning might bring. It’s the relief when you hear happy sounds coming from her room. It’s the fear of each cough or cold germ that could cause a downward spiral of seizures.

It’s the guilt you feel when you simply don’t have the strength or energy to host a playdate or clean the dishes from dinner two nights ago. It’s staying calm even when you’re terrified, stressed and exhausted.

Breath, Maya. Just breath.

It’s when she stops breathing during a seizure. It’s fearing that this is the one – the one that could take her from you. You feel her slipping away. It’s looking in her eyes, terrified you’ll lose her. It’s that ache in the center of your chest and the gut-wrenching terror.

Just breath. Just take a breath, Maya.

“Because you never know” means searching the world over for treatment options – some have been more successful than others. It means maintaining hope but feeling in your gut the possibility that there is no cure.

It means friends who understand and support your family’s choice of treatments and who play a tremendous role in your ability to obtain these treatments.

It’s having an army of friends who understand your last-minute cancellations, who clean your house for you while you take an unexpected ambulance ride, who care for your other children when all of your focus is on your seizing child, who don’t know what to say at all but are there for you.

It means hearing your children’s friends use the word “seizure” naturally and easily in a sentence. It’s feeling like the luckiest family in the world, appreciating the village that contributes to your family’s happiness and well-being.

It means knowing a love like no other.

It means making the most out of the good moments, the good days, because you never know.

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To the Teenage Girl With Spina Bifida: It Gets Better

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As if puberty weren’t hard enough – with the acne, sweaty palms and growing 2 feet in a week – add to that leg braces, a wheelchair and bowels and a bladder that don’t work properly, and you’ve kicked the awkwardness of puberty into overdrive. Yep, I’ve been there, but I promise it gets better.

Even your social life takes a hit. Which leads me to a biggie: the issue of boys. I never dated in high school. My mom tried to make me feel better by saying boys were intimidated by my chair and braces, and that’s why none ever asked me out. While this makes sense, it wasn’t all that helpful to me at the time. Seeing my friends pair off and start dating made me feel like an outsider. It sucked. But you know what you avoid by not dating in high school? Drama. It gets so much better after high school when the guys have grown up a bit and realize you aren’t all that scary.

Then there’s the issue of what to do about your lesion scar. I know you’ve been eyeing that cute bikini at Target. I also know the first thing that comes to your mind: Your scar will show. My advice? Don’t be afraid to rock it, girl! When you have a disability and are out in the world, the biggest tool you have at your disposal is your confidence. It disarms the stares of those around you. Some may still stare, but it will be because they are in awe of your confidence. Besides, you can’t control the actions of others, you can only control what your response will be. Choose confidence and you will win every time.

But your biggest obstacle as a teenaged girl with spina bifida? Learning how to handle bowel and bladder accidents. This stuff isn’t supposed to happen past the age of 8. Know your triggers, such as diet, and avoid things that turn your bowels and bladder into a tsunami. For me, it was avoiding caffeine. Weather can also be a factor. Temperature extremes can trigger your bladder to gush forth like Old Faithful – except it’s not as reliable. Say it is the middle of summer, hotter than blitz, and you go out to the mall. Using crutches to walk, you step inside the first store. The AC is on full blast. For some reason, if you don’t have an empty bladder, this drop in temperature can trigger a flow that’ll leave you with a puddle on the floor. The same thing happens in winter when you go from cold to hot suddenly. While you can’t completely prevent this from happening, there are ways to lessen your embarrassment. First, catheterize before leaving the house. If you still are unsure, don’t rely on walking, take your wheelchair. That way, if you do have an accident, it’s better hidden. When you’re in the car, sit on the cushion of your chair. If taking your chair is not possible, you can still get by with using crutches. Just make sure to wear a disposable pair of underwear over your actual panties. It may sound super lame and uncool, but I promise you won’t look like a granny. And you’ll cease to worry about having an accident in front of that cute boy from art class. Nowadays these protective pants come in slim-but-absorbent forms that are comfortable and won’t leak through. These were a lifesaver for me in college. You can find these at your local pharmacy or online at www.hdis.com.

Finally, make sure when you go out that you have plenty of catheters. I remember once when my grandparents and I drove my parents to the airport. The trip took longer than we thought and my parents missed their flight. So we had to take them on to their next destination – a two-hour drive. Guess who forgot to take extras with her? Yep.

But even with a vigilant diet and making sure to catheterize at regular intervals, accidents happen. That’s why they call them accidents. So what do you do? One way I’ve handled unexpected accidents is to pass it off as your period. This method works better than you’d expect. It lessens the embarrassment for you, and makes sense to the other person who expects this based on your stage of life.

Puberty is tough. Going through puberty when you’re disabled is even tougher. I’ve been there, and I promise you can get through it. After all, it does eventually get better.

This post originally appeared on Be Anxious About Nothing.

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The Assumption About Special Needs Adoptions I Want to Clear Up

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There’s a stigma to special needs adoptions, but it’s not what you may think.  The stigma belongs to the birth parents, labelled “selfish,” “heartless” or “weak.” It’s an easy assumption to make, a way to blame.

When we first got the call about our daughter, those were the thoughts that ran through my head. What kind of person could “give up” a child just because she was different, just because she wasn’t what they’d expected? It’s an opinion we’ve continued to hear time and time again from people all around us: friends, family, professionals, random acquaintances — people who want to be angry on this little girl’s behalf, people shocked and appalled that this could happen today.

“Aren’t you angry with them?” is still the most common question we get when we have the adoption conversation, and people are always taken aback by our answer.

Hate. Anger. Pity. None of these words apply.

Courage. Strength. Endless love. Grace under pressure. Those are far more accurate.

In our case, there are two people in this world who had a vision of what their lives would be and part of that vision — a huge part of it — was raising a child alongside a family, a family that would support them, who would be there physically and emotionally to help with this child, to celebrate this child, to watch this child grow into adulthood.  Then suddenly, without warning, that no longer existed for them. Have we not heard that it takes a village to raise a child? Overnight, their village disappeared. Add in scary and confusing words like, “congenital heart defect,” “Down syndrome,” “Ng tube,” “surgery,” “developmental delays.” Imagine being all alone.

Imagine the despair, the fear and the love.

Because love is always there; it doesn’t disappear. Love for this tiny human, love so strong that you want to give them everything in the world. Love so strong that you’re forced to realize for them to have everything, it means walking away. It’s a love story we’ve all heard a thousand times — to willingly break your own heart into pieces so this tiny human can have it all.

To physically remove a part of your soul, your very being and give it to another person to protect, to care for, to love — no one chooses to do that unless the love they have is absolutely pure.

We have the gift of an open adoption, a gift where we get to be a witness to this love.

Our daughter, our collective daughter, will grow up knowing and experiencing that pure love. If that isn’t giving her everything, then I don’t know what is. If that isn’t the very definition of a loving parent, then I’m at a loss for words.

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Follow this journey on Giggles and Hugs.

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