The Heartbreaking Moment I Realized Why My Daughter Was Crying

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My daughter is growing up.

For those close enough to witness her descent into “tweenager” this summer, this may as well be an announcement from Captain Obvious.

I hold the lead on height (but for perhaps only another week or so), she can no longer wedge her giant feet into my shoes, and we’ve taken several shopping trips centered on deodorant and *gasp* training bras.  And though, at 11, she still counts American Girl Dolls as prized possessions, I fear the days are short when a typical bathroom hazard is walking in on naked Barbie bodies littered about – reminiscent of a CSI Playschool episode.

Madeline has entered The Middle.

This is an interesting conundrum on many levels as a parent – or for that matter, a child. It’s well-documented in every Molly Ringwald movie ever made that the years ahead are sure to hold a share of drama and turmoil. But in our family, this transition is steeped with additional meaning.

One of the most heart-breaking moments of the last year was an evening I found Madeline quietly sobbing in her bedroom. I held her close and she finally divulged that she was terrified her budding new breasts were cancer. And she didn’t want to tell me because she was afraid it would add more stress to our family.

I did this to her.

It is insurmountably unfair that Maddie must learn to navigate her changing body, hormones and middle school –  with the added fear of something like cancer. And there are days when the knowledge that I have added these fears to her world is nearly too much to bear.

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At a time when Madeline needs to see that puberty is a normal part of becoming a woman – I am probably the least able to provide that reassurance. Cancer treatment caused me to go through chemopause, stripped me of my hair and breasts. It’s a bit like going through “reverse” puberty – and just as awkward and painful as I remember it the first time. But though the transitions are in opposite directions – this experience has allowed me to remember just how intense and scary the process can be.

Learning to be your own person is never an easy process, and I’m suspicious of anyone who says their teenage years were the best of their life. But hopefully, if I do it right, I will arm Madeline with something much more powerful than the reassurance that our bathrooms will always be stocked with Kotex.

I will teach her real women have curves – or they don’t. Real women have long hair, short fuzzy hair or no hair. I will teach her that being active is important – but for the joy of it and not an attempt to fit some perceived societal mould. I will teach my daughter that her greatest assets are her brain, her humor and her ability to persevere.

Most of all, I will teach her that finding yourself is a process – something that doesn’t end once you “grow up.”

And perhaps it is a great gift after all that we are able to learn (and re-learn) these lessons together.

This post originally appeared on My Life, Distilled.

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When I Feel Like I’m Bearing a Grudge Against My Kids’ Disabilities

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Sometimes when I’m scrolling down my Facebook feed, I spy a cute picture of someone’s child. Usually it’s a captured moment of something fun and typical for that child’s age. The picture that caught my eye today was of a 5-year-old playing in a basketball game. At first, it reminded me of my oldest son, who’d started playing basketball in kindergarten at that same age. Fond memories of little sweaty boys scrambling to get the ball with looks of intense concentration and joy on their faces flashed through my head. Then my brain stutters…

Wait a second… that boy in the picture is the same age as my son, Leo. Like less than 24 hours older. Immediately my heart clenches and tears sting my eyes. I’m suddenly thinking about how that could’ve been Leo, should’ve been Leo in the picture. If autism hadn’t snatched him.

Every time I think I’ve come to terms with having children with a diagnosis or two (or four), I get reminded subtly that I haven’t fully embraced and accepted every single aspect of my children’s disabilities.

I honestly think I’m bearing a grudge against all the disabilities entrenched in my life.

Since I can’t live in a bubble or a cocoon my whole life hiding from these realities, I need to exorcise this grudge. Pretending it doesn’t hurt to see the normalcy and successes of my children’s peers was a quickly learned coping mechanism, but I’m going to be real for a moment here.

For me, it sucks to see the “normalcy” sometimes. The pain can catch you unaware, slicing through your body with bold precision, and sometimes you can’t even catch your breath from the heartache coursing through you. Thoughts swirling in my head as the ache encompasses my soul: Damn you, autism. Damn you, Down syndrome. Damn you, sensory processing disorder. Damn you, apraxia of speech. Damn you all for making it harder for my children to succeed. Damn you for making them scream. Damn you for making them cry. Damn you for making them struggle to stay healthy, to speak, to walk, to make friends, to sit in a classroom calmly, to be included and to be content. And damn you for making me feel weak and inadequate because all I want to do is fix it for them, and I can’t.

So I’ve thought about it: How do you rid yourself of a grudge? I’m sure there’s been oodles of books written on this subject, but my particular grudge is more visceral and not easily forgiven, forgotten or let go. The reality of a disability is always present, always in the forefront of our lives. We don’t forget my daughter, Lily, has Down syndrome and autism. We don’t brush aside the seriousness of keeping her healthy. We see Dasha, who also has Down syndrome, determined to fit in with her peers while those same peers are struggling to even understand her speech. It’s hard to ignore the fact that my almost 6-year-old son, Leo, still can’t talk well. His cries, screams and shouts remind us daily of his frustration, and of course there’s his autism blanketing his every move, his every social interaction and his every thought.

I’ve done well in the past celebrating the little victories. What would seem like small successes to most can be huge for us. It’s progress, and we love progress. Progress means we’re closer to obtaining a goal. Baby steps. Huge leaps and gains are few and far between so we focus on the little triumphs. Like cheering when Dasha did well in dance class instead of misbehaving. Enjoying Leo saying, “I want corn chips, please” appropriately while ignoring the backwards “please chips corn want I” whispered immediately afterwards. Watching Lily getting on the bus without fighting us every step of the way and her sweet smiling face greeting us every. single. morning. Being awed when Reagan gets a 32 on his ACT and not focusing on the immature “incident” with his twin brother at school during class where he overreacts to the teasing his twin doled out. And praising Kaelan for remembering to feed his reptiles without being reminded and doing well during his latest drive-time with his driving instructor instead of focusing on the negative verbiage coming out of his mouth.  (I should note that the lines between comparing a teen and a teen with autism get blurrier every day).

I think back to the days before Facebook and other social media. I was buffered from noticing the differences between my kids and other kids their ages. But it’s been harder this time around seeing the Facebook world tout their “Facebook” lives with all their fun-loving, typical family activities. I myself always err on the side of optimism on Facebook. Because really who wouldn’t rather see one of Leo’s spellings or a picture of Dasha in dance class than hear about one of Lily’s latest sh*tastrophes?

So I think the first step I need to do is to forgive autism, Down syndrome, apraxia and sensory processing disorder (plus all the other unmentioned diagnoses) for existing in my children and making many aspects of their lives so much harder for them. I guess my real quandary though is how do I forgive or cease to feel resentment for something that at times is so distressing?

Well, I could remind myself how some of the many traits I adore about my kids wouldn’t be a part of them if they were free of their disabilities. Like how Lily’s and Dasha’s smiley moon eyes and joyful exuberance light up my world. Or Leo’s stilted request for a kiss even though he’s barely verbal. And I suppose some of their more advanced talents may not have flourished if not for their disabilities. For example, Reagan and Leo read and spelled by the time they were 2, and Dasha is quite skilled at American Sign Language. Obsessive-compulsive disorder (OCD) can have benefits particularly when mastering knowledge about a certain favorite subject. So I guess in a way, I’m holding a grudge against a part of my child that they have no control over.

Another idea is to not let the disability overtake my perception of my child. Lily, Leo, Reagan and Kaelan have autism, but I need to remember autism doesn’t have them. They are so much more than autism with so much incredible potential. This could be easily said about someone with Down syndrome as well. Lately I’ve been focusing on the disability more than my children as a whole. I need to alter that way of thinking and change my perspective.

Secondly, I need to accept that the diagnosis or diagnoses will always be a part of my child. Always. This is a tough one because many of the diagnoses we’re dealing with change or evolve as the child ages. The hardships brought on by their disabilities can be seen like mountains and valleys. Some are huge and seem almost unbearable while others are just blips on the screen barely making a dent in the scheme of our lives. It’s recognizing the differences and not letting every difficulty or the comparisons of other’s lives via Facebook or at the elementary school’s winter party escalate into a mountain when it should just be a molehill.

I’ve recently started going back and rereading all the happy, uplifting posts on my personal blog. All the fun times and the gratifying or silly Instagram pictures to remind me how good we have it during some of those low moments. It’s too easy to go to the dark side in moments of frustration, fear and irritation and focus on the negatives, but I know in my heart how truly blessed we are to have these seven amazing, unique kids.

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Next, I need to forgive myself for feeling this way. Too often guilt comes into play when we feel anger, resentment or listen to the why me? ringing through our heads as we’re cleaning up another mess of bodily fluid, going deaf while the child flips out over the phone ringing because of his sensory processing issues or once again arguing with a teenager on the spectrum who blatantly and without remorse ignores your rules because he thinks they’re illogical, especially now that he’s officially 18 and therefore an adult.

Finally, I need to find a way to endure those in society who deem my children not worthy of acceptance or inclusion. To witness such fear from others who are terrified of having a child like mine is understandable to some extent but also quite sad. The outright disrespect and bullying that goes on against individuals with disabilities scares me to no end, especially as my kids age and gain some independence. I think these reactions bear heavily on my heart and help fuel the grudge I’m bearing. I do see these misperceptions slowly changing around me, but the change is sluggish and conditional. The community as a whole has a long way to go in changing erroneous ingrained beliefs and removing the stigma about disabilities. Only then can the fear and the contempt be removed and true acceptance become a reality.

Side note: Please let me be clear that I don’t resent anyone’s pictures or status updates of happy or exciting events in their lives on Facebook. I truly enjoy witnessing your joy, but this was just something I needed to write about to help me deal with my harboring grudges and perhaps bring awareness to others who may be in the same spot I am with their child’s disability.

This post originally appeared on Our Version of Normal. You can follow this journey on Facebook here.

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The Letter I Wrote to My Son After a Tough Day Together

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My beautiful boy, these are just a few of the many things that I love about you:

Your relationship with your brother makes me proud.

When I brought your little brother home, I cried. Not because I was struggling with the new baby, but because I felt so guilty for turning your world upside down and not realizing how hard you would find it.

When I didn’t even know I was pregnant, you looked me in the eye one night as I put you to bed and said, “Mumma. Beeebee.”As the baby grew inside me, you were so tuned in to it. You’d kiss my belly and tell me “beeebee” all the time, and as he entered the world, you told Nanny “beeebee” even though you were two suburbs away. So when we came home I thought you’d be fine.

It broke my heart to see you drop to the floor with your hands over your ears and cry or scream at the slightest squeak from your brother, and I’ll forever remember that the first time he laughed, you screamed and punched your leg at the sound. But I’ll also always remember that you took yourself away from him whenever you felt the need to lash out against the noise that hurt so much. I could see you wanting to be near him, but so pained by the sound of his cries. You worked through all of that and more.

I still tear up to remember those first gentle touches, with one fingertip to his foot, then to his hand, his tummy, and ever so gently your hand stroking his head. The moment you kissed him, because you wanted to, made my heart absolutely soar with joy and pride. Now I watch you play beside him, and give him his toy when he drops it over and over again just so you’ll give it back to him with a smile, and I’m so very proud of how far you’ve come. He adores you, that little baby, and seeing the love that you have for him just blows me away.

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You are affectionate.

There is not a day that goes by that I do not thank God for this. I think, clichés aside, that He knew that this was what I would need the most as your mum. I love that no matter what kind of day it has been, you will still give me a kiss goodnight (before you shut the door in my face and get into bed with Daddy!).

I love that even though you have few words, you will occasionally say “luv yoo,” and you mean it. I love it that when we’ve had an awful afternoon or morning you will take my face in your hands, just as I do for you, and look deep into my eyes with a smile. I love that you will come and snuggle up beside me, just because, or that you will wrap my arm around you as we walk into school. I love that you give your baby brother the gentlest kisses in the world, and I love how you cuddle up to me as I sing you to sleep.

Your affection has a powerful affect on people. I’ve seen more than one person become emotional after you’ve gone up to them and given them a cuddle. It’s like you know that they needed it and they know how truly special it is for you to give them that moment. You show empathy when all of the “experts” say it is beyond your abilities. If someone is upset you will comfort them, and when one of your classmates has been unwell, you put your arm around them and kiss their cheek.

You give everything, every day. 

Some days this doesn’t seem like much to someone who doesn’t know you, but those tough days, when the world is spinning for you and everything is out of alignment, are the days you give the most, just to be present with us.

It’s so easy to forget this and focus on how hard things are for us on those days. Forgive me buddy, for it is so much harder for you. You work harder every day than any 5-year-old should have to, but you give it your all, and I deeply love and respect you for that.

You teach me.

We watch everything you do. Every task is broken down, every direction repeated over and over and every action analysed. I often wonder if you do the same for us. I think in your own way you do, and you are so much more forbearing with our frustrations as we learn than we are with yours.

You teach me to stop and see the things that I am too busy too see: the dust floating in the sunlight, the rainbow in that tiny bubble, the birds singing so softly in the distance. I am often so slow to understand what you are showing me, yet you keep trying with a patience that I envy. You are not resentful when I am impatient, and you forgive me over and over again when my attitude stinks. Without words, you bring me back to a place of gratitude and hope, each and every time.

And you make me laugh.

You have a wicked sense of humour. I see your brain whirring sometimes and I see you start to giggle as you think of what you are about to do. It’s no coincidence that you love the sign for “mischief”! You make me laugh loudly and often, and it makes your day that someone shares the joke with you.

My little free spirit, you live your life with a joy that infects those around you. I love you and I am so very blessed to be your Mumma.

A longer version of this post originally appeared on The Autism Bubble.

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The Dangers of Keeping Disability in the Closet

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We whisper. We move to a more private room. We use vague terms. We are given privacy policy documents. We are assured that our feedback will be given anonymously. Because that is expected.

There is so much secrecy around disability.

It has become so normal to hide a mental disability, that it’s just assumed we won’t want anyone to know about our situation. It is just expected that we will want to keep this quiet.

I understand the need for it to some extent. I understand that it is meant to help us. But I think the secrecy that is designed to protect us is also creating, or at least perpetuating, the problems that we fear the most: discrimination and bullying.

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It is so rampant and accepted, that we are made to feel like we must hide from it. We are led to believe that this is the only way to protect our children from the haters and the bullies who might attack us if they knew. And so we do it.

We tell the autistic child not to flap or make his noises in public, so people won’t stare.  

We try to keep him quiet in a restaurant, so people won’t say something to us.  

We try to get him to dress like the other kids so that he won’t stand out at school by wearing his baggy sweatpants every day. 

We tell him to keep his hands out of his mouth or his fingers out of his hair, so that people don’t see his stimming behavior and think he is “weird.” 

But why?

Why should our child be made to act like someone he is not? Why should he have to work even harder to fit into somebody else’s standard of “normal”? Why are we to be punished because we have a child who is different?

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Why should we be the ones to hide? Why should we be the ones to feel ashamed?

Just so that the haters won’t have a target?

I think discrimination and bullying happen because of a lack of understanding, a lack of familiarity, and a lack of empathy. I think people fear (and sometimes lash out at) what they don’t understand. And by keeping disability in the closet, we are doing nothing to help people understand. We are doing nothing to demonstrate to them that even people with disabilities aren’t abnormal, they’re just different. We are not helping to create any familiarity or empathy. We aren’t educating them that differences are OK, that differences are what make us great. All we are doing is perpetuating the behavior that we fear.

I don’t want to do it anymore.

What if we refused to hide? What if instead, we were all out in the open? What if we refused to make our child fit their definition of “normal”?

What if all of the parents with special needs kids banded together and forced the world to look our children square in the face and accept them for the beautiful, unique, loving people that they are?

Imagine what might happen…

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A longer version of this post originally appeared on Another Normal Day.

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I Used to Fear My Child’s Autism Diagnosis

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Dear Autism,

I will never forget the day we met. It will forever be burned into my memory. That was the day you almost took control of not only my son but my entire family. You almost had me, Autism. For an instant, I became victim to the fears that so often accompany you.

How could you possibly be knocking on my door? I’d done everything right. I never missed a prenatal exam. I ate right. I breastfed exclusively for an entire year. I was diligent with his doctor appointments. You must have had the wrong house. But you came anyway. And then you proceeded to subject me to endless nights full of guilt and unrest.

What had I done to cause this? This must be my fault. You filled my head with self-doubt and self-loathing. I started to grieve for the son I thought I’d lost to you. I often found myself feeling sad for my younger daughter, who became nearly invisible amongst the tantrums and therapies. I had a fear of what the future would hold for my precious son. Will he be independent? Will he attend college? Will he get married? Will he be bullied or labeled by a society who doesn’t understand him? Will I be capable of being the mother he needs me to be? Can I build him up when he feels different? Will I be able to show him what an amazing person he is? Will I have the tools to show him he is more than his diagnosis? Will I ever hear the words I so desperately long to hear, “I love you, Mommy?”

I have so many questions and so few answers. I still find myself going to those dark places from time to time. But from all those negative feelings, I’ve become a phoenix from the autism fire. I’ve become stronger than I ever thought possible. I can look at my beautiful baby boy and no longer see the face of autism. I see Tyler. I see a sweet, smiling little boy who is full of curiosity and energy.

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He’s my spectacular puzzle. All I want to do is keep that sweet smile on his face. I want to expose him to every experience I can that might be the key to opening something new and adventurous for him. He is my teacher. He is my gift from God. He has taught me how to see things from his perspective, and now, life is so much more colorful than I’ve ever seen it before. He’s taught me that everyone has a story, and sometimes people need more support and less judgment. He’s taught me to appreciate every milestone.

Because of you, Autism, I’ve met some of the most amazing people I’ve ever known. People I would probably never have met otherwise. We’ve been a support system for each other when you’ve tried to lock us up in your dark hole. Because of you, Autism, my family and marriage are stronger than ever. I’ve become an advocate and an encyclopedia, if you will, of information for families that unwillingly have you in their lives.

Autism, you almost had me. But the joke is on you, because we’re thriving.

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why We All Lose When Kids With Disabilities Are Shut Out of Sports

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Eight-year-old Casey is in many ways like any other boy, especially when it comes to his passion for sports. But he has a problem that affects us all.

Casey is autistic. That isn’t the problem. 

Casey would be thrilled if he could swim in a relay race with his peers and feel the sense of camaraderie of a team. Autism isn’t standing in the way of this. Sure, it’s potentially a roadblock, but years of various therapies have given him the motor skills, coordination and focus to begin competing with his peers. That is, if he’d been able to start playing sports when they did, way back when they were 3 years old.

At this point, it doesn’t matter what sorts of laws exist to demand equal opportunity for kids with disabilities in school sports. Casey is so far behind typical kids in his access to athletics that he’s missed out on all of the developmental and social benefits he could have been gaining, and he won’t have a prayer of making any school team when they start in middle school.

This isn’t just a squandered opportunity for Casey. It’s a loss for the entire community.

I believe sports are important in our culture. Youth sports play a significant role in the community life of my neighborhood; it’s hard to stay in  the social loop if you don’t participate. Whether you believe that the increasingly ramped-up intensity and competition for young kids in sports are a good thing or not, we can all recognize that playing sports provides a host of benefits for our bodies and minds, from exercise to community engagement to the development of social skills, self-esteem, teamwork and leadership. Children like Casey often gain even more from sports, as they tend to be more deficient in the skills that sports enhances. As their peers grow stronger and more confident from their participation in sports, kids with autism can fall further behind, so the social and physical gaps between them and typical peers grow even wider. Their exclusion from community sports and the associated social activities that surround sports, sets the stage for further segregation and isolation.

This isn’t just damaging to the children who are left out. When typical children are denied exposure to children with differences, they lose the opportunity to learn important life lessons, like how to accept people who may not look or act like you do. These are harder concepts to teach when kids are older, after the clay has hardened and there has been little interaction.

And of course it’s not just the children with disabilities who become isolated. Their families grow increasingly separated from the community, with fewer common activities and occasions to interact.

In 2010, the U.S. Government Accountability Office released a report that found students with disabilities participated in sports “at consistently lower rates than students without disabilities.” Subsequently, the U.S. Department of Education issued a letter of guidance to school districts nationwide clarifying their obligations under federal civil rights law to guarantee students with disabilities equal rights to participate in school sports and other extracurricular activities in public schools.

Problem solved, right? Not exactly. The organizations and town-sponsored recreation leagues that run sports classes and teams for preschool and elementary school-aged children, where many children get their start, are not subject to these laws. So by the time Casey gets to middle school, when competitive teams begin, his typical peers will have hundreds of hours of sports training that he missed out on.

No one is asking community sports organizations to fundamentally alter the tenor of their teams to accommodate kids who might need a lot of special help getting out of the starting block.

But there’s a middle ground between political correctness run amok and total exclusivity.

Given the current reality, families of kids with autism are banding together to form their own teams. I’ve met some of these families and was so inspired by their determination that I began filming their experiences for a documentary film.

The Jersey Hammerheads swim team was formed by a family from Edison, New Jersey, that decided to create their own opportunities, and the result has been life-changing for everyone involved. Two boys on the team are now swimming with their local YMCA’s team, two more swim for their high school teams and one swims with an elite private swim club that boasts Rebecca Soni as an alumna. The experience is revelatory for both the children on the team, which includes Casey, and their parents.

“We didn’t realize how important sports could be in our son’s life,” one mother told me. “His capability and success have changed my whole outlook on what’s possible for his future.” She now believes that as a result of his success in sports, and especially swimming, college is within reach for her son. “If he can learn this, he can learn other things too.”

Homegrown teams like the Jersey Hammerheads and organizations like Special Olympics can serve as a springboard for inclusion of athletes with disabilities onto typical teams. They’re a great place to start for the child who needs to learn at his own pace in a supportive environment.

But that doesn’t mean there shouldn’t be more and earlier on-ramps to community teams for kids who require support to play with their typical peers or that the community should be exempt from creating alternate teams for kids who need their own space to learn. Families of kids with disabilities are already overwhelmed. They deserve a wider array of support, and it shouldn’t be left up to them to create sports teams from scratch.

Beyond the considerations of kids with special needs, typical children shouldn’t be denied the positive experience of interacting with their peers with disabilities through sports — especially when they’ll find that on the field, on the court or in the pool, they have more in common than not.

When every child is shown early on that inclusiveness is a paramount value to strive for, we all win.

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