What I Wish I’d Known the Day My Twins Were Diagnosed With Autism

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My twin sons were diagnosed with autism almost 12 years ago. If I could go back to that diagnosis day, I would tell myself this:

The diagnosis won’t change your kids. They are the same wonderful children, but now they have a diagnosis. The diagnosis will open doors for therapy, respite and Medicaid-waiver programs. Autism will never define them.

You will feel isolated socially. It will be difficult to take your kids to playdates or to the local shopping center. One day you will notice that many of your friends are fellow parents of differently-abled kids. They understand in a way nobody else can.

You will worry if it’s too late to start a therapy. You will worry if you can afford it. You will research, ask questions and wonder if you will ever see progress. You will discover to trust your instincts.

You will laugh out loud when your son wonders if a rude girl at school is related to Al Capone. 

You will learn to speak up and ask questions. You will learn not to care what people think of you.

You will be surprised when you discover you are pregnant again. You will wonder if it’s a singleton or twins. You will worry about where to put the baby (or babies!) in your modest home. (Can the baby live in the garage?) Everything will be chaotic, but you’ll survive. You will have gray hair and bags under your eyes. You will learn about hair color and makeup.

You will meet people who will amaze you: teachers, principals, associates and kind-hearted students. You will appreciate the work of SLPs, OTs and PTs. You will be grateful for the many people who will enter your family’s life. Without autism, your paths would never have crossed. You will be convinced that many of them are angels.

You will nearly lose your mind when you and your husband decide to drive cross-country to visit family. Your son will play the same Elf movie clip for hours on the portable DVD player. You will have car trouble. Even though your nerves will be shot, you will call the trip a success because you made it there and back without losing anyone. Plus you will still have your sense of humor.

You will laugh when your son wears his Mickey Mouse ears on top of his winter coat hood while waiting for the school bus. It will be his way to say, “Mom, take me back to Disney World.”

You will understand that your husband is the best father in the world, and you can’t imagine being on the journey with anyone else.

You will cry when your son says his first words, even though they are not intelligible to everyone he meets. You will be delighted when he gets his own AAC device and can push buttons to say, “I love you” and “I want some ice cream.”

Your heart will nearly burst when you see your sixth grade son on stage at an all-state choir, one of the few students chosen as a solo finalist. You will wonder how the world can get any better or more beautiful than it is at this moment.

You will learn that some people will never understand autism, nor will they try. That’s OK, too. You don’t need them in your world. They might get there someday. Or not.

Your son won’t always be getting up at 2:00 a.m., ready for the day. You will meet a holistic pediatrician who will help your family in many ways with diet, sleep, transition and anxiety. Some people will think you’re nuts. Trust your instincts.

You will not work a full-time job. Your children need consistency and comfort, and you give them both by being there when they go to school and arrive home.

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You will laugh when your son says he wants to go sledding because he has always liked gravity and acceleration.

Every morning you will wave goodbye to your son when he gets on the bus. One morning several years from now, he will wave back. It will be the greatest feeling in the whole world.

You will lose your patience. You will yell. You will think you are going off the deep end because raising kids with autism is difficult. You will learn to take deep breaths and go for long walks.

You will be very pregnant, shopping in Target. One of your sons will lie on the floor and scream. The other child will start crying. You will hear people whispering that you shouldn’t have another child if you can’t control the ones you have now. Continue to take your kids out in public. Eventually it will get easier.

You will be proud of your son and his athletic ability. He’ll attend Special Olympics events (even overnight events with school staff) and will come home happy and tired – with a few medals buried in his suitcase.

You will learn that despite both of your boys having autism, they are as different as night and day. One will excel in mainstream classes and will be discharged from special education. One will be enrolled in a special school for students with disabilities. People have all kinds of opinions about these decisions, but it’s none of their business. You will do what is right for your sons.

You will discover autism isn’t the end of the world; it’s just a different one.

Even when they are teenagers, you will go into their bedrooms for a brief moment in the night and watch them sleep. You will marvel at what amazing kids they are, how much progress they have made and how lucky you are to be their mom.

You will be on a roller coaster ride for years, likely the rest of your life. The highs are exhilarating, and the lows are disheartening. You’ll hold on for dear life during the sharp curves. You’ll scream. You’ll experience the thrill of wind whipping through your hair. You’ll be scared. You’ll laugh. The next day you’ll brush your windblown hair and start over again.

At times, especially in the beginning – you will feel lost. Eventually you will discover you’re exactly where you need to be.

This post originally appeared on Turn Up the V.

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A Decade With Down Syndrome: What a Difference 10 Years Has Made

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This past Saturday, we had an opportunity to see what a difference a decade makes from the day you receive the diagnosis that your child has Down syndrome.

This past Saturday, our friends Jim and Mynique McDonnell threw a birthday party to celebrate their oldest child, Parker, turning 10. It was quite a celebration.

Jim and Mynique have regularly played the hosts with the mosts over the years. Fortunately, my family is on this invite list. Indeed, we were one of the first in this circle of friends.

This is because, Parker’s parents learned he had Down syndrome, like our daughter, Juliet, when he was born. Parker’s aunt and I worked at the same law firm, and she connected Jim and I. Soon, my wife and I were visiting Jim and Mynique in their home, holding Parker and sharing what we’d learned up to that time, with Juliet being six months older than Parker.

In those early days, every parent wonders what this life holds for them. Other parents have shared their concerns of when/if their child would walk, talk, run or play with other children. It’s just such a time of the unknown and every concern imaginable can cross a parents’ mind. This is not to say that these were Jim or Mynique’s concerns, but they are common concerns.

Fast forward ten years to the scene this past Saturday, and you will see how those concerns can make us parents shake our heads almost in disbelief.

In disbelief because at this party — held at one of those jump-house indoor places — you saw boys and girls with Down syndrome ranging in ages from 6 to 10 running, climbing, shooting baskets, scaling a ladder to then slide down a huge slide, and talking, laughing and carrying on with each other and the siblings without Down syndrome.

I don’t know how many others took a moment to take it in — because this really is just the life we’re all used to at this point — but I sure did.

I remember just five years ago when I would have been moving through the same obstacle course to help Juliet wind her way through the tubes and slides, her mother ever watchful, noticing every move to make sure Juliet didn’t take a tumble. Now, five years later, her mother went out with her girlfriends to a nightclub while I barely knew where Juliet or James were throughout the whole party.

This is not to say each of these kids have not faced their own challenges. Juliet is unfortunately in what seems to be an every-other-year down cycle at school; another little girl had to travel to a specialist to disconnect a tethered spinal cord; some of the other kids have behavior issues that are being addressed; and Parker has received special instruction and hearing aids to minimize the effects of congenital hearing loss.

But, even listing those conditions would ignore that Juliet’s brother, James, had a down year at school last year and had an MRI as an infant because of a possible tethered cord. I spoke with a mom there who would be a teacher for a close family member of mine who is attending the mom’s school for children with behavioral issues (and this family member only has 46 chromosomes). And during the time for pizza and cake, I saw a fellow father sign to his daughter some words, not because his daughter was hearing impaired, but because she had learned sign language as a child and that is an effective means of communicating across a loud room.

So, some of the same challenges faced by those children with Down syndrome have been faced by their siblings and family members without Down syndrome.

This group of parents used to meet once a month at Down Syndrome of Louisville (DSL) when our children were just babies. We would sit in a circle and exchange tips on therapies and share concerns. Then, our children attended weekly group developmental intervention therapy classes, readying them for preschool and kindergarten. Now, they attend school-age programming once a month.

None of this – absolutely none of this – could’ve been envisioned when Juliet and Parker were born ten years ago.

At that time, the concerns outweighed the dreams, at least for me. I worried about Juliet meeting developmental milestones as a child, thriving in school, having true friends. I couldn’t see that Juliet would introduce me into an entire circle of friends I probably would have never met otherwise, or that those friends would be some of the strongest friendships because they were forged during times of trials with each of us supporting the other.

And, I couldn’t have envisioned that it would be my son who chose to play with Parker almost the entire evening and on the ride home, say more than once:

Parker’s awesome.

Indeed he is.

Happy birthday, Parker.

What will the next ten years hold for all of us?

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James, Parker, & Juliet

This post originally appeared on Down Syndrome Prenatal Testing.

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How My Son’s Life-Threatening Condition Made Me View Food Differently

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IMG_3475-e1413307081225 Five years ago, I thought I was an expert about diets. A lifelong calorie counter, Weight Watchers attendee and portion controller, I figured I knew nearly everything there was to know about special ways of eating. Show me a food and I could tell you its nutritional information and three healthy ways to cook it.

The day we came to understand my son Zack’s diagnosis with a rare metabolic condition, I was humbled to the core. I walked into the clinic proudly boasting to the metabolic nutritionist that I knew about diets because I’d lost a lot of weight and understood these things. My face is turning red now at the memory. To her credit, she was gracious as she explained to me the concepts of this totally different way of managing food.

Zack, then 11 months old, was placed on a low protein diet where even the protein counts on food labels were too inaccurate to use. Every food was weighed to the gram and recorded. We ordered low protein foods from a medical supply company and learned to cook with low protein flours and starches. All meat, dairy, nuts and higher protein sources would be forever off the table for him. Regular flours in bread, rice and pasta were too high in protein, too. Fruits and vegetables were allowable in measured portions. (Yes, even broccoli and strawberries have some protein in them.) This diet seemed impossible to believe, yet here it was being handed to us.

I became a martyr about Zack’s diet. Sure, some people have to eat gluten-free. Maybe gluten-free and dairy-free and add allergies and sensitives too. To me that seemed like total freedom compared to what we were dealing with. Even a diabetic diet was freedom compared to this.

I mourned the loss of the life I thought Zack would have. I mourned the loss of freedom for our family. Random trips to the 31 flavors shop – gone. Swinging by a friend’s birthday party and gobbling up cupcakes— gone. Grabbing a snack on the way somewhere — gone. Life with food as we knew it — gone.

As with all situations where a family has no choice, we gradually made adaptations. During one of the many conversations I had with our ever-patient dietitian, when we were wrapping up the conversation she commented, “After all, it’s just food.”

“After all, it’s just food.”

I was taken aback. Whoa – just food?! How could this be possible? Since when in my life had food just been food? Since… never. And I was in danger of passing my same obsessions on to my son.

It was time for me to bring the obsession meter down about 10 notches. I discovered that when I stopped looking at the world through the lens of food-is-the-end-all-be-all-everything, suddenly it became a difficult but manageable life change.

Zack is, for the most part, happily content with his low protein diet. He’s now 6 years old and while he’s not always 100 percent on board with it, what 6-year-old boy is 100 percent pleased with any limits his parents set about anything? Most of the time, he’s perfectly fine eating what he eats. We strive to not make food a big deal. We have our kinds of food, and he has his kinds. He eats the fruit, vegetables and bread along with our family and then “his kind” of other foods, like low protein cheese and pizza. Thankfully as he’s grown, Zack’s diet has become somewhat less restrictive, which has helped. He gets a bit more protein, as adjusted for his body weight, so he’s now able to eat items made with regular flour, although he will never eat meat, dairy or other higher protein items. All in all, Zack’s a great kid with a weird diet.

I learned that food is just food. I was forced to learn this for the sake of my child. Perhaps I’m still learning it. At times I miss stopping by 31 flavors on a whim. But then I look at the face of my sweet boy and I think — you my child, are totally worth it. I wonder if God looks at me and says the same thing.

This post originally appeared on SaraBorgstede.com.

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This Powerful Photo Series Challenges the Way We Talk About Mental Illness

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As a woman of color living with depression, Dior Vargas knows a thing or two about what it’s like to feel marginalized. She decided to do something about it.

Vargas, 27, embarked on a moving photo project that provides a space to recognize mental illness on a public forum. Deemed the People of Color & Mental Illness Photo Project, the idea behind the series is to create a community that helps people of color with mental illnesses feel less alone.

“I wanted to humanize mental illness in a way that’s more accessible to others,” Vargas told The Mighty.

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Vargas says she arrived at the idea after connecting with other women of color with mental illnesses on Twitter. She found solace in finally sharing her experiences with others who have similar stories. This comfort, she says, was something she lacked growing up. Mental illness is a topic notoriously swept under the rug, and Vargas felt that those who do speak out about it are most likely caucasian.

“Maybe if I’d seen equal representation [of people of color] growing up, I wouldn’t have felt so alone,” she told The Mighty.

A self-described “Latina feminist mental health activist,” Vargas’s feminism plays a large part in how she thinks about mental illness.

“It’s what first sparked my thoughts about the different dimensions of individuals and giving voice to people who are silenced,” she said.

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Since the project was officially launched last fall, Vargas has received more than 30 submissions, all of which are posted on her website. She’s additionally working on an anthology of writings by people of color about their experience with mental illness and is currently accepting submissions.

See some of the remarkable submissions below.

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Amanda

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Jaime

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h/t Mic

Photos courtesy of the People of Color & Mental Illness Photo Project

To submit a photo or piece of writing to either of Dior’s ongoing projects, email her at [email protected]

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The Day My Baby Boy Was Diagnosed as ‘Profoundly Deaf’

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Thinking back on the date September 12, 2012 stirs many deep feelings inside of me. It was our D-Day… Diagnosis Day. The day my baby boy was diagnosed as being profoundly deaf. The day the life I knew ended and the day a new life, one as the parent of a child with special needs, began.

I see myself sitting in that little room alone with only my baby and the doctor who broke the news. I was scared, sad and lost. I didn’t know where to go, what to do, how to think or why. Why him. Why my baby? Why me?

Now, almost two and a half years later, and after another diagnosis of sensory integration disorder, I wish I could tap myself on the shoulder and whisper to myself a few secrets about the future. A few little secrets that would have lifted my downcast head and dried the tears upon my cheeks. Secrets that would have given pause to my fears and replaced them with little glimmers of hope and tiny inklings of wonder. If only I could have seen then what I see now, this is what I would have told myself that day:

“You may not be able to heal him, but he will heal you.”
He will heal you of your flawed definitions of “perfection” and “normal.” There’s no such thing as normal, and perfection is the love, innocence and joy he exudes. He will heal your desire to control life and remind you of the importance of faith. He will heal your selfishness and replace it with compassion and empathy.

“You will meet amazing people along the way, people you could not imagine a life without.”
The doctors, specialists and therapists you connect with will make an impact that lasts a lifetime. You will forge deep bonds with other parents who are going through similar issues, and they will be a built-in support system you come to rely on.  

“You will learn about unconditional love.”

We all long to be loved and accepted no matter what we do or who we are, and your child is no different. He cannot do anything to earn your love; in fact, he will bring a lot of challenges you didn’t expect, yet you will love him more than anything. Likewise, he will see you in your most exhausted, frustrated moments, and still, he will be your biggest fan.

“You’ll be part of a miracle every day.”
After Junior gets his cochlear implants, you will see a miracle every single day. Tears — happy, happy ones — will sting your eyes when he hears you whisper, “I love you” and whispers, “uh lub oo” back. You will call to him from downstairs and he will run out of his bedroom, wondering what you want. You will ask him to hand you his plate and he will. He will try to sing along at church, he will ask you for more apple juice, he will bob his head when the radio is on. He will always be deaf, and yet he will hear you. And you will never, ever take that for granted.

“You will get the encouragement to keep going when you need it most.” 
There will be days where you’re tired and sore about your circumstances, but you will also come to rely on the little breezes that give you rest and encouragement. Just when you feel ready to give up, something will happen to keep you going. You will meet another parent further down this path that can give you a glimpse of good things to come, someone will send you an encouraging article or quote, or your child will do something to remind you that it’s all OK. It’s all worth it.

“You would not change him.”
Yes, there are many parts about his deafness and sensory processing issues you will want to change. You will long for a good night’s sleep (I might leave out the part where he’s still not sleeping through the night at 2 years old.) You will be sad when people treat him different for no reason, you will get jealous of the parents who don’t seem to work as hard as you do, and you will still ask “why.” “Why” will never end. But, you will also come to a beautiful place where you accept every part of who he is and realize that all those parts make up the perfect little boy you love.

I know you can’t imagine what this path is going to hold. God created this path for you… you’ll never know why, but you’ll take great comfort in knowing it didn’t just happen. You were made for this. It will be a trek, but always remember this: the higher the mountain, the more incredible the views. And from here, the view is pretty good. You’ve come a long way. Sure, there are some other, higher mountains in the distance, but a future me will have to share those secrets later. I’m sure the view will be even better.

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When I Was Honest About My Autism in My Online Dating Profile

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10398525_1104670020650_2626378_n Do you remember the old saying that there are plenty of fish in the sea? Well, I’ve had a hard time accepting that the past couple of months. In the process of losing a special girlfriend, I fell into a bad place. I thought she was amazing. In my efforts to work on myself to show her I could be better, I wrote several blogs about our relationship — “The One That Got Away” was featured on both The Mighty and The Autism Society of America’s blog.

During this time, my self-esteem was at an all-time low. Out of all the women I dated, this one clearly mattered the most to me. But I learned you can’t wait to see how things are going to turn out; you need to live your life the best you can and let whatever will be, be. I needed to move on and make sure I didn’t make the same mistakes twice.

That’s when I entered the world of online dating. It was something I’ve always encouraged my mentees with autism to try. It seemed like a good alternative for those who have difficulties with face-to-face communication. For me, communication with my peers, no matter the method, now comes easily. It wasn’t always this way. Being able to speak on a national level about my life with autism gave me the opportunity to build confidence in who I am.

With the end of this break up, though, I wanted to try something new and something I’ve advocated for in our community for years. I decided to try it for one month. I started off with eHarmony and later joined Match.com, OkCupid and Coffee Meets Bagel.

As the trial month went on, I noticed both positives and negatives to the online dating scene. First, there’s no guarantee when you reach out to someone that they’re going to contact you back. This was probably the hardest part of my experience. How do you make that amazing first impression? I tried many things: I complimented photos, asked questions about interests listed on their profiles, told jokes, etc. The first week was definitely the most challenging of all because nothing seemed to work. I was beginning to lose hope.

When I thought all was lost the “aha!” moment happened inside my head while I was pitching a story to a local news station about my giving a speech about autism awareness at J.P. Morgan. I had a moment of clarity. I didn’t need a gimmick. I didn’t need a pick-up line. Maybe I just needed to tell them who I was. Who I really was.

I start telling these women my story — how I was nonverbal until I was 2 and a half, how I was diagnosed with autism at 4, how many people thought I may never have a girlfriend, how now, at 27, I’ve become a professional speaker who’s had several relationships. It was just a shot out of the dark. “Why not?” I kept telling myself. What do I have to lose at this point? I sent my first message to one woman on eHarmony before I went to bed, and at 2 a.m. my email ring went off on my iPhone with a response.

“Jasmine wants to get to know you.”

That moment right there was enough for me. The next day we started talking, and even though we ultimately didn’t end up dating, that wasn’t my last message on a dating site. The next day, I sent out more messages; more and more women were responding positively.

I’ve begun talking with a few amazing women, and I have to say, I’m excited to see what happens next. My confidence was low, but the best lesson I think I learned from a rocky and shaky couple of months is that there’s a right person out there for everyone, you just have to be willing to work on yourself and be true to who you are and what you have to offer.

For those on the spectrum, I hope you hold that dear to you every day. We all have our quirks out there, but at the end of the day you have to be comfortable with who you are before you can expect someone else to do the same. Be who you are, love who you are, and ultimately, whether it’s in a relationship or not, you will be happy with your results every time.

You can read this original blog at Kerrymagro.com.

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