To the Dad Who Thought a Diagnosis Meant He’d Never Get to Share His Love for Michigan Football

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If I could go back to that day in 2002 when we received a diagnosis of autism for my son, I would have a lot to tell myself. Here it goes:

You’re on the first step of a path. So is your child. Your spouse and the people closest to you are also on one. But you’re not on the same paths, even though you’re all headed in the same direction.

The destination is uncertain, vague. Or rather, where you think you’re going will change over time. It will remain unclear, nebulous. You will learn to stop looking way down the road and start looking for the next mile marker because by the time you get to it, you may be looking for a different destination altogether.

You will learn that even though you and your spouse’s paths sometimes diverge, that’s OK. You will learn the pointlessness of arguing over this.

You will go through a process. Fear, anger, depression. Mourning, even. Your process will be different from your spouse. Again, this is OK and not worth arguing over. Just as no two people on the spectrum are exactly alike, neither are the life experiences we bring into the journey as autism parents. And your life experience will color how you perceive that journey. A lot.

You will learn that process is for you, not your child, and that it’s a prerequisite to the real work of parenting that sits ahead.

You will learn that there are no guarantees in parenting, whether your child has any sort of diagnosis or faces any particular challenges.

You will learn that autism is not something your child has, but a part of who your child is.

You will start by trying to teach your child to act like everyone else. You will uphold “normal” as the end-all-be-all goal.

You will learn the folly of both those things. In fact, your beliefs about autism will change so much over time that you will hardly recognize how you once felt. But you will realize that this process, too, is part of the journey.

At some point, you’ll find yourself apologizing for your child. You will hate how this makes you feel and resolve never to do it again.

You will realize that parenting a child on the spectrum involves a mix of teaching your child to bend to the expectations of the world and teaching the world to bend to your child.

As time goes on, you will do less of the former and more of the latter, and you won’t spend two seconds wondering if that’s the right thing to do.

You will learn to recognize — and celebrate — difference. In your child. In your other children, whether or not they carry a diagnosis. In the people around you. In yourself. That co-worker/friend/acquaintance who keeps to himself and who everyone whispers about? You’ll stop joining in and regret that you ever did. You’ll wonder instead what makes them the way they are. You’ll begin a search to discover what overdeveloped strengths they have to counterbalance their social awkwardness.

You will have conversations with your child about topics you never imagined. You’ll get over it and learn that these are things you probably should be discussing anyway and not letting them “figure it out for themselves.”

You’ll spend a lot of time looking for, celebrating, being ambivalent about, and finally reveling in, your child’s strengths.

Somewhere along that path, you’ll understand the need for your child to recognize his strengths and take pride in them. It will hit you. This is the right time to tell him about his diagnosis.

You will learn that you were wrong to forget about, or set aside, whatever dreams you had for your child the day you learned the diagnosis. You will do this because you learn that those dreams are no more accurate for your child on the spectrum as they are for your neuro-typical one. You will do this because different dreams take shape, and they get realized, one painstaking step at a time, and when they do they will mean more to you than you ever could have understood were it not for the journey to get there.

The journey will not be without difficult, frustrating moments and periods. You will wish for a manual and hate that there isn’t one. You will recognize the importance of advocating for your child and learn where to seek the proper support. The trial-and-error nature of some of the things you try will exacerbate you to no end, but from those trials you will discover go-to strategies that work over and over.

Routine will become your best friend and occasionally your mortal enemy. You will learn to safeguard your child’s routines the way a mother hen guards her chicks. And then one day, you’ll recognize that old routines have been discarded while you weren’t paying attention. And then you’ll recognize that you need to let go of some of those routines because your child already has.

You will learn to think as (you think your) child does. You will try to see the world from his perspective, and this, too, will change how you parent.

You will find an incredible, supportive online community. Otherwise strangers, who understand exactly what you’re going through in a way people who are closest to you in your real life cannot, no matter how well-meaning. You will find strength and encouragement in this community and a desire to share your own experience. It will help you become more comfortable with the journey you’re on. It will inspire you to create a written memoir of your journey that you hope to share with your children one day.

You will learn to celebrate tiny moments and small victories. At first you will wonder if these small things are really important. Then you will learn they are, no debate needed. You’ll learn that this makes you a better parent, and you will seek the same with your other children and in other aspects of your life. You will come to recognize that this is a gift, one you would not have experienced had your child never received that diagnosis.

Each time one of these moments occurs, it will be indelibly burned into your brain in a way that makes you both smile and cry at the same time.

Oh, and you, Mr. Obsessed Michigan Fan, you will not have to let go of your dream of sharing Michigan football with your son. It will take you a few years longer than you thought, but it will be incredible. And in the midst of one of the worst seasons in the worst period in the history of Michigan football, you will take your son to the Big House. You will watch Michigan lose in a way that used to send you into a funk for several days. And late in that game, with Michigan’s fate all but settled, you will turn to your right, and your son, the one who you wondered if you would ever get to share this experience with, the one who you wondered if he was really taking this all in, will be singing “The Victors” and throwing his arm up with every “hail.” You will snap a photo of it that will become one of the most cherished ones you will ever take. You will call your wife, unable to speak as the tears flow. She will understand anyway, as she always does.

You will be OK.

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A version of this post first appeared on Pucks and Puzzle Pieces.

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These Wonderful Faces Are Changing the Way We Define Beauty

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Katie Driscoll is a mom on a mission to get companies to include models with disabilities in advertisements. Driscoll, a photographer and mother of six, including a daughter with Down syndrome, founded the organization Changing The Face Of Beauty with fellow special needs parent, Steve English, to put the pressure on advertisers.

The campaign has had a lot of success, with 30 U.S. companies hopping on board so far. There’s been an outpouring of support via social media.

“The response to the campaign has been unreal. It gives me hope for the future,” Driscoll told The Mighty in an email. “I believe globally we’re changing the way people look at models as well as people with differences and that makes me so very happy.”

The organization created the hashtag #ChangingTheFaceOfBeauty and encouraged people everywhere to tweet photos of the beautiful children in their lives who are so underrepresented in the media.

These are some of the photos helping to change the face of beauty:

 

To participate, tweet photos of the beautiful people in your life using the hashtag #ChangingTheFaceOfBeauty.

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Why I Let Myself Cry on My Daughter’s First Day of Preschool

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My little girl started daycare today. Breathe, Momma, breathe.

While it’s hard for anyone to leave their babe in the hands of others for all the obvious reasons, for me, leaving my daughter, Pip, is so much more. I mean, besides going away for the first time last week with my husband, her and I have never been apart.

I guess it’s also the undeniable fact that while there’s still issues — like her little eye contact falling out, developmental delays that come with having Down syndrome or her glasses getting broken — at the end of the day, she’s thriving and growing up, and sometimes I still momma hen her because I remember moments when she wasn’t.

Moments when she needed a feeding tube to survive.

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Moments where surgeries to fix her heart and eyes loomed over us.

Moments when nothing else mattered in the world except holding her in my arms.

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So, to let her freely walk out of them caused some major momma tears this morning.

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And I know all the “it will be good for her” and “you need this time” and yada, yada, yada goodness that it all will bring. But today I choose to dwell in these tears.

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Tears of letting my little girl go.

Tears of being so damn proud of her.

Tears of fear that she’s going to be teased, bit, pushed or not accepted.

Tears of excitement to see the impact she has on all those around her.

Tears of peace that her big brother is there with his big, sweet heart and protective bulldog tendencies.

Tears of acceptance that this is what is needed for our family.

Tears of thankfulness that I’ve had two full years with her.

Tears of guilt because I’m a momma and that just undeniably happens.

Tears of happiness that as soon as I put her down and let her loose in her classroom, another little girl went right up over to her and hugged her hard. That little girl will never know how she helped ease a momma’s heart. I know this is just daycare, but I can’t help but get emotionally revved up imagining this all when it comes time for real school. The “will she get teased,” “will her brother, Noal, be there to protect her” “will she be OK” kinda thoughts swirled in and out of her today. So that little girl coming up and hugging her helped the swirls stay positive.

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The amazing daycare director and staff sent me pictures and updates throughout the day, and I think they’ve already fallen in love with my sweet girl. Pip had a great day — a million times better than Noal’s first day or any of my friends’ kids days combine. She rocked it like I knew she would. Yet I still ate too many Snickers and got emotionally crazy and felt the need to ride the change train all the way and chopped off all my hair.

I need help. And more Snickers.

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This post originally appeared on The Happy Soul Project.

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When My Son Showed Up Early

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IMG_2979 I still remember the day everything in my life changed. I’d just been given the news my one and only mama had died. I was eight months pregnant at the time with my second child. I hugged my son so tight and told him about his Grandma Betty going to be with his Geedo (our name for my dear dad, who died two years and two weeks prior.) I don’t remember much after, except talking to my best friend. She said, “You’re so calm, why aren’t you crying?” I had no idea; the shock was strong that day.

Fast forward to my mom’s funeral. There I stood, waiting to sing with the choir. I remember hitting notes high in the stratosphere as I sang her favorite hymn. A month passed, and I experienced bleeding in my pregnancy and went into early labor. I still remember how scared and in shock I was. My precious baby boy made his appearance at 36 weeks. He was a healthy 6 pounds, 2 ounces. He didn’t cry. He wasn’t purple; he looked like a little loaf of bread not quite finished baking. The OB/GYN had later woken him up, and he made this meowing sound, and I looked at my husband and burst out laughing. “Did our baby just meow?” I asked.

Off to recovery I went, and my son went to the NICU, where he stayed for ten days — the longest ten days of my life. I was sent home to be with my family, but we didn’t feel like a complete family without our baby home. I went to the hospital every day every three hours to feed him. After that I would cuddle, change and put him back to sleep. Then I’d go across the hall to the lactation room to pump and save some bottles for him. I would do this till 10 p.m., then go home to my husband and my 4-year-old and try to live a regular life.

I would start the process all over again at 6 a.m. I knew my baby was sensitive. He didn’t open his eyes for five days; when he did, he took in my face and the world around him. He didn’t like the noise, bright lights or the shift changes between the nurses. He wanted to be held all the time. My doctor had told me, due to my boy’s prematurity, he would be developmentally delayed.

I was still in surreal mode. My son showed incredible tenacity and strength; he was able to leave the NICU and come home. When the health nurse came to assess him, she said he was growing well and asked us if we had any questions or concerns. I told her my first son was strong and could push himself off my chest as a newborn. But my baby had mutant strength. I proceeded to show her how he could roll completely from side to side at just 10 days old. She had said it wasn’t the normal thing you’d see for a newborn — that he was a “just in case baby.” That meant to always put your hand on your baby just in case they roll off the change table.

As my son grew, I noticed his sensitivities did as well. He wanted to be held and fed constantly and my husband and I joined Team No Sleep for months. He would cry relentlessly when I put him down. I spent those first three months of his life sleeping in a rocking chair. It saved my marriage and allowed me to cry silently in the still hours of the night for my beloved Mama.

As I introduced solid food to my baby at 5 months, he had a lot of texture and taste aversions. I had to mix sweet potatoes with everything. As he began to use finger foods, he wouldn’t touch certain ones. He was meeting his milestones, albeit a little later than his brother and what the books said. I didn’t worry; I was happy he was meeting them at all. He preferred fuzzy blankets to flannel and cotton to denim, and he howled if there was a bright light in his face.

He got to crawling at 9 months and taking his first steps at 10. He was speech delayed and would say very few words for the next six months. I noticed at 20 months the progress he was making was stopping. He finally started sleeping through the night at 2 years. I contacted my doctor and told her of my concerns with his speech delay, lack of sleeping and taste and texture issues. She said to be consistent and gave me a handout and websites to follow. I knew there was something else going on so I talked to my health nurse. She gave me information and I made the referral to see a child development agency. I saw a child development councillor, occupational therapist and speech and language pathologist while waiting to see the developmental pediatrician. In the meantime I read “Out of Sync Child” by Carole Kranowitcz. Suddenly, my child’s sensitivities began to make sense; finally someone understood him.

The developmental pediatrician diagnosed my son with having Sensory Modulation Disorder of the Sensory Processing Disorder condition. This was three weeks before my son turned 3. Six months later, I’m awaiting getting my son assessed for autism spectrum disorder. His speech has caught up to his peers, but he’s still behind on potty training. I’ve been working with him on awareness the whole summer; now the goal is to work on his interceptive sense that gives him the ability to distinguish hunger, thirst and urge control for elimination. I’ve been fortunate to qualify for respite care; I have a worker to help with strategizing.

And my son has someone to look after him while I have some me time. So everything’s starting to come together; I finally asked for help. My days are full; I’m my son’s mom and sometimes occupational therapist, and we do his sensory diet and speech therapy daily. I’m hoping to qualify for funding so he can wear a weighted vest; he’s a seeker of all sensory input and in a constant motion. I work on his proprioceptive sense so he’s more aware of his body in his environment and not crashing into people. He has his little teepee tent for when he needs his quiet time. In there, he has his sensory bucket of toys that calms him and makes him feel comfortable in his own skin. And now we start the process of getting him prepared for preschool. With his Obstructive Sleep Apnea diagnosis given last year, I have to get his blood panel done and start seeing an allergists. He’s on medication to help him sleep.

This isn’t what I expected when I found out I was pregnant with my son. I’ve had to grieve for my beloved Mama and for my son’s struggles in life. I still have to remain an advocate for both my children. I don’t ask for sympathy; I don’t feel sorry for myself. I truly believe that God only gives the most special children to the strongest parents. Sometimes it’s so hard, and all I want to do is cry and throw in the towel. I allow myself to have that moment and dry my tears and get back up on the horse again. I like to think that even though my son didn’t have a full-term birth, he came along right when I needed him the most.

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You’re a Good Mom, Even When You Don’t Feel Like It

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To my former self, on the day we received one of Caiden’s first (and scariest) diagnoses:

Not every parent can say they have their pediatrician’s personal contact information, but then again, Caiden isn’t the typical patient. You should be proud of yourself for deciding to stick with this doctor. She’s going to be an essential part of the diagnostic process, and your biggest professional supporter.

IMG_20150112_111920 She’s going to call on her own time from her personal number so you can talk about the first diagnosis. Remember to save her number like she tells you to; you’ll need it later. You’ll spend a good half hour on the phone scribbling down notes as she explains three words that should never be put together when talking about an otherwise healthy child.

Global Cerebral Atrophy.

It’s only by chance that we stumbled upon it, and it won’t be the last unexpected diagnosis in his ever expanding medical file. That one routine MRI to rule out cerebral palsy, a possible result of his prematurity, will be the catalyst that turns your life upside down and catapults you into unknown territory.

Don’t waste your time Googling it; you won’t find much and most of it doesn’t pertain to him. Your best source of information will be the neurologist. I know you’re scared. You thought we were just dealing with autism, something I promise will finally be diagnosed in a few more months. But now you’re suddenly faced with the real possibility that his brain is dying, and that’s terrifying.

Go ahead and cry. Just remember, you’re not to blame for this.

Make sure you take notes when the doctor calls, even if they’re a mess. The other doctors you’re referred to will want to see them. It’s difficult keeping all of his doctors on the same page, so notes and appointment summaries are  important. Don’t forget to bring his records to every appointment.

You’re going to hear words like “cancer,” “deformity,” “trisomy” and “biopsy,” but six months, three additional doctors and a dozen tests later, most will come back normal, and you still won’t know much more than you did that day.

That’s good. It means most of the really bad stuff has been ruled out. You aren’t in the clear yet, but you’ll handle each bit of information the best way you know how, and you should be proud of that.

Remember that to find out the answer, you need to pace yourself. If you schedule too many things too close together, you’re going to get burnt out. You can’t be his voice if you’re hospitalized for exhaustion.

Lastly, and most important, try to remember you’re a good mom, even when you don’t feel like one. Despite the mountains of self doubt and mommy guilt, I want you to know that he loves you, even if he can’t tell you for himself.

Follow this journey on Narrating Caiden.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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If I Could Go Back to the Day I First Saw My Dad in the ICU

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Dad and Me If I could go back to the day I first saw my dad in the ICU, I would tell myself to breathe.

It’s OK to freak out. Don’t think too far ahead. Think just far enough to have groceries for lunch tomorrow. Today will happen and so will tomorrow. No matter what happens between this tile floor and those fluorescent lights, tomorrow will come. You will survive this. You will.

As crazy as this sounds now, there will be good that comes from this. Your father’s condition may actually bring your family closer together. The terror and sleep deprivation will bring out the honesty between you and your parents. Having to make tough decisions will force you to have conversations you have long avoided. You will not hide behind being nice when there’s no time to shower and you’re spending 14 hours a day at the hospital.

Also, buy an accordion file folder. A big one. You will have tons of papers we will need to keep. Papers describing his condition, copies of bills we can’t pay, descriptions of exercises the physical therapist wants him to do. And actually file the papers. Keep a journal listing all the encounters with all the doctors and the insurance people and the social workers.

In the moment, it will be so easy for you to remember all of the details, but now, nine months later, it’s harder to remember.

You will have lots of conversations with lots of doctors. Record all the conversations with doctors who let you. This was a trick I learned a few weeks in. Use the voice memo app on your phone. That way you can have a record of them for later and you can share the info with Mom when she’s at work.

Catch the doctors every chance you can. Before you leave the hospital at night, ask the nurse what time the attending on duty likes to round. That way you know when you need to get in the next day. If she says they round at 6 a.m., be there at 5:30. If you don’t catch the doctors when they’re rounding, you probably won’t see them all day.

reflection If you do, it will not be for a good reason. It probably means Dad is going back into the ICU again. Don’t freak out. OK, freak out if you need to. But know that, no matter how much it hurts to see Dad like that, it will end. It will not be like this forever. And, in the ICU, he’s on so many medicines that he will not remember most of what’s happening anyway. His time there will probably be more traumatic for you than it will be for him.

It will end. Well, not really end. But it will change. He will not be in the hospital forever. One way or another, there will be a day he will leave the hospital.

On that day, you will not be the same woman you were today. On that day, you will be capable of things you cannot even fathom doing today.

You will be stronger and weaker, harder and softer. Things will make you cry that never bothered you before. Things will not faze you that used to stop you in your tracks.

You will be different. You will change. You are not the only one. Everyone changes. Even Dad. Even you.

You will change, but you will not end. And neither will he.

You will survive and you will be happy that you did.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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