When My Son’s Autism Diagnosis Was the Miracle We Needed

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When I was in junior high, my dad built a large wood soccer kick board in our backyard. I grew up in rural New Jersey, and we had a good amount of yard space to practice any sport. This board helped me develop the skills I needed in the various sports I played. I vividly remember throwing and catching lacrosse balls with it and playing one-on-one matches with my dad using the board as my goal.

It also was a way to bond with my dad. We spent hours outside together. We would talk about sports and school. He would give me advice, and I would tell him my goals for the future. The simple board helped create a special connection with my dad.

When my son, Max, was born, I was so nervous to be a mom. I loved him with all of my heart and soul, but I didn’t know what I was doing. Parenting was something new, and it was something I didn’t go to school for. I read books on parenting, nursing and having a happy, well-adjusted baby. But when Max started missing basic milestones and was socially behind his peers, I was unable to connect with him and didn’t feel like a good parent. I was failing my child. I wasn’t doing something right. Max would spend hours screaming all day and physically hurt himself. He was unable to communicate. As much as I wanted to understand, I didn’t. I was frustrated, depressed and worried I wasn’t a good mom.

Then a miracle happened. We talked to our pediatrician and discussed the things we had observed with Max. The doctor comforted us and told us there was help. He also told us weren’t bad parents. Instead, he explained we’re the parents of a special child who needs our help to navigate through life. 

At age 2 1/2,  Max was diagnosed with autism. This was a year and a half ago. Since then, I have been gathering the tools to allow me to enter his world. The diagnosis wasn’t the end of the world; it was the beginning of a brand new one. It’s a world I’m so lucky to be a part of. Autism has helped me reach both of my children. It has helped me become a better mother, wife and teacher.

Max has been the best guide in the world. He is a fantastic example of unconditional love, kindness, stubbornness and devotion to his love for life. He still faces challenges, we all do. But at least now he has parents who have the tools to help him be successful. Having two children with autism gives us even more tools because what we have learned works with Max might not work with our youngest son, Dexter. We have to be constantly learning.

Autism isn’t a label for my family. It’s a tool, a guide and a world that connects me to my boys.

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Follow this journey on Spaceship Max.

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‘Switched at Birth’ Scene Tackles Ignorance Around Down Syndrome

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The ABC Family show “Switched at Birth” is taking on ignorance surrounding Down syndrome.

In a clip from an upcoming episode of the show, the character of Lily, played by Rachel Shenton, is opening presents at her baby shower. We come to learn that her baby has Down syndrome after a guest apologizes for gifting her an elaborate train set. This prompts another guest to pipe in with some opinions about the genetic condition, to which the character of Kathryn Kennish, played by Lea Thompson, responds. Thompson shuts down the woman’s ignorant views.

The full episode will be airing on Oct. 19 at 8 p.m. on ABC Family, Zap2it reported.

Watch the clip below: 

 

 

h/t Zap2it

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8 Ways to (Kind of) Prepare for Your Child’s Brain Surgery

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Wouldn’t it be nice if an actual list or blog existed to prepare you for something like brain surgery?

Over the past two years our family has fumbled our way through tuberous sclerosis complex and all the crazy curveballs it can throw. From seizures to hospital stays, to therapies and now brain surgery. I’ll be honest though… I never expected to be having to prepare for brain surgery. It wasn’t something I’d put on my radar. Was I aware that behavioral problems may arise? Yes. Was I aware that seizures could wreck havoc on our daughter? Yes. Was I knowledgeable about most anti-epileptic drugs (AEDs)? Yes! I’ve advocated for our daughter, researched for our daughter and gone blue in the face fighting for resources for our daughter. But I never imagined being here, sitting on the phone hearing the words, “Our next step is brain surgery.”

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It felt like we were being told of her diagnosis all over again. The words stung. I felt all the warmth in my body fall to the floor. Images of her having her brain opened up flashed in my mind along with images of her in a hospital bed, being unrecognizable to us. There’s something haunting about seeing a tiny child in a hospital bed that engulfs them. It doesn’t fit; they shouldn’t be there.

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It’s been a few months since we heard those words, and we’re now nearing the surgery date. Nothing has changed as far as my fear. I still feel as if we’re blinded to what will truly happen once we walk into that hospital. My hope and focus is on my desire to not be constricted by the walls that this disease has put around my family. Hope is around the corner; I can see it and feel it on days when clouds aren’t weighing me down.

So here we are, a little over a month to go before we go down a less-than-inviting road without a map. We have no clue what to expect; we only lean on the small percentage of families who have traveled this road before us. We will lean on them until we have our own story to tell.

But if I had to make a list of how to prepare it would look like this:

1. Lean on your fellow surgery parents

2. Don’t get caught up in the what if

3. Pray… alot

4. Expect great things to happen after surgery

5. Trust in your ability to parent

6. Take a deep breath

7. Show your child love you never new possible

8. Allow yourself a good cry in the shower

For now, this is how I will prepare… if there is even such a thing.

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Why I Want Loved Ones to Stop Suggesting I Have Another Baby

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“You should have another baby!”

Almost four years ago to the day, when I gave birth to my son, I didn’t have any plans on having another child. Fourteen hours of labor was enough for me. We would be content with an only child. As any mother knows, soon that pain from labor disappears and the joy of life overwhelms you. When my son was diagnosed with a genetic degenerative disease, we were told not to get pregnant anytime soon. The odds of us having another baby born with this disease was 25 percent. It would be something we really needed to sit down and talk about.

One in four… it doesn’t sound so bad. That doesn’t mean one in four pregnancies, though. That means a 25 percent chance with every child. If I had a 25 percent chance of winning the lottery, you can bet I’d buy a dozen tickets every week.

Over the last three and a half years, I’ve watched my son lose almost all of his abilities. I’ve watched him in pain and knew there was nothing I could do to make it stop — besides give him more medicine than he already takes just to sedate him and let him rest. I’ve prayed endlessly for a miracle and total healing. I’m putting all of my effort into keeping it together.

Do I think about having more children? Of course, I think about it. Do I think about it more when family and friends tell me how good of a mother I am and that I should really have more? Yes, and it hurts.

When are we going to get another baby? The answer is that we don’t know if we have it in us to take that risk. The answer is that is scares me to even think about it. The answer is that I am waiting for science to find a cure. The answer is maybe someday. Do you see how much I’m thinking about it?

What I want to tell my friends and family is to please stop asking me to make that choice.

The Mighty is asking the following: What’s the one thing you want to tell your friends and family members but can’t about your experience with disability and/or disease. 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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To the People Who Watch Our Special Needs Family From the Sidelines

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Last week, I picked my son up from preschool and lingered on the playground for a bit, just watching him play. I watched the kids swirl around him in dizzying circles, up and over the playground structure, around the sandbox, running with effortless ease. Laughing and calling to one another in high-pitched toddler squeals. Kids, truly, without a care in the world.

I looked over to my sweet boy, watching him climb up and down the play structure, full of life. And yet without the same boisterous energy of his playmates. He has energy for miles, but it’s a different kind of energy. A heavier energy. Perhaps an energy born of a lifetime of experiences no one should ever have to endure. An energy honed after four and half years of literally fighting for his life against one of the most severe heart defects, hypoplastic left heart syndrome. And I was sad for him, sad for how hard he has fought just to play on the playground like other kids. 

And I found myself angry. Angry at a group of 3- and 4-year olds. Seriously. Ridiculous, right? My son has the sweetest classmates, and I love them. But, in that moment, I was angry. And sad. And I was resentful of their sweet lives, which are devoid of any pokes, prods and horrific procedures.

The feeling passed quickly, but it surprised me.

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I don’t often feel like my son has “missed out” on much in life. We really do try very hard to let him live as typical of a life as possible in spite of being medically fragile. He goes to preschool, he “plays” (as long as it’s a very loose interpretation of that word) sports, he loves to color and crash his cars, he has chores just like his sister. By most accounts, he lives a rich life.

And yet, sometimes, the reality of what he’s been through still hits me.

So this is what I would say to those who watch from the sidelines and wonder how we do it: This life is tough on the inside.

Not always. Sometimes it’s amazing, and the blessings are overflowing. And 100 percent of the time, I am confident this is where God has called our family.

But even so, sometimes it is freaking scary.

Of course it is when you’re in the hospital and in survival mode. That’s kind of a no-brainer, right? Everyone can see that.

But sometimes it’s hard even when it doesn’t look like it.

There are the times when my mind races back to appointments that ended in unexpected hospitalizations, which triggered a massive amount of anxiety and stress, having almost lost my child more than once. And my mind races towards the inevitable — will this be the appointment where we finally start to see his heart function decreasing or his body not liking his circulation?

Times when sweet chubby little hands reach out for medications, as much a part of life for him as playing with his little cars. And times when he can name all of his medications without skipping a beat.

Times when a new pediatrician stops short upon walking into the room, saying, “Wow. I just read his file, and this was not the child I expected to see.”

Or times when you watch him play on the playground, and realize that his life is so, so much bigger than any 4-year old’s should be, his worries deeper, his life experiences more colorful.

And it hits me again, almost as hard as the sucker punch from the initial moment of diagnosis. For just a moment, the clarity of it all, of everything he has been through, hits me. And it brings me to my knees.

For those of you on the outside, I say thank you for still keeping those of us on the inside grounded. Thanks for sticking around. Thank you for asking me how I’m doing, how my husband is doing, and how my son is doing and how his sweetheart, healthy big sister is doing.

Thank you for recognizing this journey isn’t always easy, but it’s the journey we’ve been called to.

Thank you for praying for us up close and from afar. Thank you for interceding on our behalf when we’re too tired or too scared to.

Thank you for not making it all about my son’s heart, about what makes him different, because it’s not always all about his heart. Someday, his heart will dictate decisions he makes in his life.

That day, it will be all about his heart.

But today is not that day.

Today, he just wants to be a boy, playing on the playground.

Thank you for letting him be that kid.

Follow this journey on Hope for Baby Bennett.

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A Letter to My Best Friend’s Voices

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You know me well, but I hardly know anything about you.

When you first arrived, I didn’t notice you at all. I didn’t know you were seeing everything she saw and hearing everything she heard. I thought there were two of us, but now I know there are more. Had she not told me you were there, I still might not even know. Please understand: this is unsettling.

I’m not upset you’re with my friend at work. When we hang out, either invigorated or agitated at the end of the day, she’s usually still talking to you when she walks in the door. Sometimes she’s chuckling, like you made a joke that really hit the mark. You must know her co-workers as well as she does and exactly what she thinks of them. It’s been a long time since I had a work friend like that. It must be a nice thing to have.

Other times, I catch my friend repeating something I can’t make out – but insistently. I imagine she’s practicing an argument on you; a complex idea that needs to be explored, trying to fix some highly specialized issue. Honestly, if her internal monologue is as intense as her arguments with real people, better you than me.

I’m not upset she has conversations with you, that you know her family better than I do or that you’ve witnessed all her mistakes and achievements. I’m sometimes glad you’re there for her.

Other times I’m less impressed by you. It’s like when I call a friend, and our call is cut short by a child’s sudden and urgent need. You start to hear noises in the background, my friend says she have to go and you briefly hear a youngster’s screaming before the line cuts out. I imagine a similar scene when my best friend hears you. I can’t hear your insistent shouts over the conversation, but I notice the drifting attention and the sudden change of mood. My friend can’t ignore your presence any more than a parent can ignore their screaming 2-year-old. Two-year-olds, however, eventually grow up. No one can babysit you so my friend can have a weekend’s peace. Whenever it suits you, you interrupt, and leave only when you’re satisfied. You, the voice of anxiety and doubt, hold her hostage.

These hostage situations upset me. As a teenager, I felt like a hostage on car rides with my parents. We’d get in the car, the radio would get turned off and there I was – in the hot seat until we reached our destination. The car ride was uncomfortable, but short-lived, and I choose to believe my parents did this with good intentions. You offer no such assurance. There’s no predicting when or where you’ll show up, or how long you’ll batter her with unwelcome opinions. Worst of all, one of you has, at times, suggested for her to act wholly out of character, to take decidedly malicious and harmful action. You have invaded safe places and terrorized her when she was most vulnerable.

Yet, she protects you. She pretends, to everyone else, you’re not there. She mutters to herself, and when I – thinking she was talking to me – ask, “What?” I’m answered dismissively. “Nothing,” she’ll say. “You know I hate it when you point out I’m talking to myself.” In those moments when I suddenly become a third wheel, I have to remind myself you are part of her. It’s strange and sometimes hurtful, but it seems counterproductive to try to broach the subject.

To her, you are ever-present and nearly tangible. An impetuous creature, sometimes soothing, sometimes harmful, helpless and incapable of changing. To me, you are nondescript — a mere shadow of a fly on the wall. I originally — mistakenly — thought you were the “self” in “talking to oneself.” Now I understand you are an impatient editor, hovering over the rough draft of my friend’s thoughts as they’re being written, ready with a broad red marker.

Editor, Friend, Terrorist, Wallflower, Infant – I don’t know what you call yourselves. Would it even help to name or count you? Despite your manners, I accept my best friend comes with an entourage. A close circle I can’t see, talk to, hear, thank, tell off or joke with. It’s OK – just know I’m blaming all the stolen lighters on you.

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