Sometimes I Forget That Our Son Has Down Syndrome

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Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his two year old tantrums, his mischievous smile and go getter attitude. Gabe is stubborn yet kind hearted.  When big sister is having a dramatic, I’m-four-and-the-world-is-OVER, meltdown, he is the first to run and check on her.  He often climbs into your lap and stretches his little fingers up to stroke your cheek, his way of saying “I love you”.

He also destroys things; opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music and will start to dance the second he hears it. He absolutely cannot resist participating in a round of Itsy Bitsy, or Twinkle Twinkle, no matter how upset he may have been seconds before. Gabe can make music from anything, even dancing to the fireworks on Fourth of July celebration.

Sometimes I forget, because Gabe is just that; Gabe. When I look at him I don’t see Down syndrome, I see my son, Abi’s brother, a sweet, willful, amazing, determined little boy.

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Sometimes I forget, and that makes it even harder when someone reminds me in a not so kind way….

Like the cashier who gave me the sad eyes and spit poison in a whisper, “I bet you wish you had known before he came out. You know they have a test for that now…”

Shock, horror, hurt and fury coursed through my body. I considered jerking her over the register and beating her senseless. I looked her up and down, I could take her….but orange is not my color.  So I used whit instead.

I smiled a crazy lady smile “I know right?! It’s SO much harder to get rid of them once they come out. Believe ME, I’ve tried…”

Jackpot! Her mouth dropped open and she stared at me in shock. I leaned over the edge of the counter and whispered back at her:

“So what you’re saying is that it’s okay for me to kill him while he’s inside, but not outside my body? For ME there isn’t a difference. For the record, we knew EVERYTHING about him while I was pregnant. There is no way in hell that I would let any harm come to either one of my children, including during the time that they’re so ridiculously considered disposable.”

I sometimes forget. I HAD forgotten that sometimes other people don’t immediately see GABE, they see a “downs kid”. They see poor parents and a burdened sister. They see a child who must be suffering in some way, sickly and incapable.  I sometimes forget, until I glance up and see the pity in their eyes, or hear ignorant comments in not so hushed whispers.

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I sometimes forget, that it’s not their fault, they just DON’T KNOW. They don’t know the sting that their words carry. They don’t know Gabe, they haven’t heard his giggle or been infected by his smile. They haven’t seen the fierceness with which his big sister protects him, despite her insistence that she doesn’t like “boy babies”. They have screamed at the top of their lungs for him as he conquers a new milestone, their parent hearts swelling with pride.

I sometimes forget that, that was me once too. What I knew about Down syndrome before Gabe, was what I’d learned from my nursing text books. It was only enough to leave me sobbing hysterically and envisioning a listless, immobile, incapable child.  I didn’t know.

Sometimes we forget, to us they’re just Gabe, AJ, Max, Gavin or Maddie, and that’s how it should be.

Related post: I Never Knew I Wanted a Child with Down syndrome

Dear Newly Inducted Special Needs Parent

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I see you.

And I don’t mean I physically see you (though I do). I mean I see inside you — I see the storm that’s tearing your soul apart, bit by unimaginable bit.

I can see you because I am you. Not now you, of course, but rather future you. And I’m here to say, I understand.

Whether you’re sitting in a hospital NICU or your car after a visit to a specialist’s office, your mother’s living room or your cubicle at work, I know your pain: a primal cocktail of fear and sadness and desperation and anger.

A feeling like none other you’ve experienced to date.

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“They” have told you the second worst thing you could hear as a parent: Your child has special needs. Your child will never walk, talk, hear, see, process, understand, feel, be able to [insert physical/cognitive/functional ability here]. Your child is “not normal”.

And whether your child has suffered a sudden brain injury or suffers from a congenital disease doesn’t matter. The end result is the same: This child’s future is not the one you had imagined. This child is not the one you had imagined.

This child will not have the adolescence about which you have spent hours and days and months and maybe even years fantasizing. This child will need far more than you have anticipated. This child will become at once a trial and a blessing.

You feel guilty for having these emotions, I know. What kind of parent perceives her child as a trial? You should, after all, be glad s/he is here at all. And OHMYGOD you are. You are so indescribably thankful. You are so filled with love for this child, you could burst at any moment. But you are also worried. Very, very worried.

You feel guilty for questioning how you might possibly give this child the care s/he needs. You feel guilty for wondering how you will provide your other children with the attention they require. You feel guilty for fretting about how you will pay for all the medical expenses. You feel guilty for contemplating what all this will mean for your family routine and dynamics.

Some judgy types will jump to curse you for thinking of your child as a burden because that’s all they see in your raw emotion. They will ignore the undying love you have for your child. They will ignore how incredibly grateful you are to have your child. They will ignore your desire to do whatever it takes to ensure your child is safe and happy and healthy. Instead, they will preach about how they would never ever ponder these questions, or worse, if they’re special needs parents as well, how they have never had these same feelings.

Forget them. They’re liars. And perhaps convincing themselves that they would never is just their way of coping.

You will mourn for your child in the same way one might mourn a death. And you are mourning a death, if you think about it. The death of the hopes and dreams you had for your child. The death of the plan you had imagined for your family.

So go ahead and mourn that death. There is nothing unnatural or heartless or improper about it. It is part of the grieving process. It is necessary.

You will be bombarded with “God only gives special children to special people” and “This is God’s plan” from well-meaning people who think they’re doing you a service or simply don’t know what to say.

Grit your teeth and bear it. None of it’s true, so don’t worry. God hasn’t specially selected your child to suffer a lifetime of physical and emotional pain. He hasn’t chosen you out of many to live in agony on purpose. God isn’t that cruel.

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You will see parents with “typical” children in the grocery store and at the park. You will see pregnant women smoking or drinking caffeinated beverages. You will see parents abusing their children, both verbally and physically. And you will hate each and every one of these people with all the darkness and malice your soul can muster, for how do they, with their carelessness and ungratefulness, get to escape your child’s and your living hell?

You are perfectly justified in having these feelings. But remember, it isn’t their fault. And while we’re talking about fault, it isn’t yours, either. So indulge in these emotions privately. Most importantly, don’t let them eat you up inside. They are perfectly natural but also potentially dangerous. Entertain them with caution.

Your child will grow and flourish and defy expectation. The cloud of depression and anxiety and despair in which you live will thin. You will feel better. Much better. Many of your initial fears will be allayed as your child comes into him/herself and his/her body. Some of those fears will remain, but they will not burn as hot in your heart.

Some may mistake your poise and grace and got-shit-togetherness as a sign that you’re “over it.” They may expect you to be just as social and able and willing and available as everyone else. After all, parenthood is hard for everyone, so what’s the big deal? What makes your life so much harder than theirs?

Just remember that they don’t know — can’t know — what it’s like to live your life. They don’t know just how many therapists and doctors your child must see, each with his or her own separate set of “homework” assignments to tackle. They don’t know that every play date is just another therapy session in disguise. They don’t know how much time and energy it takes to get one’s shit together every day. Their jobs are hard. But yours — yours is hard in a different sort of way.

The fact that your job is hard does NOT, however, make you a saint or a superwoman or a better parent. It simply makes you capable of doing what needs to be done, just like everybody else. What needs to be done for you and yours may take more time and energy. That’s the only difference between you and them.

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Eventually, while you may still ponder the what-ifs on occasion, you will mostly be unable to imagine life any other way. You will be comfortable in your routine. You will be well.

So let me remind you, newly inducted special needs parent, that I see you. I see inside you at the storm that’s tearing your soul apart, bit by unimaginable bit. And I promise you, it will get better. It will be OK. You will be OK. Most importantly, your child will be OK.

And I know this because I am you. Not now you, of course, but future you.

Related post: I See You Over There

I Thought We Had More Time

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I sad because my legs no work so good.  I no run fast like Parker. My legs no work.

It’s the heavy silence that follows the bomb dropping, where all you can hear is the sound of your own heartbeat pounding out its instantly accelerated rhythm in your ears, followed by the air slowly leaving your body – the breath you’ve been holding since he said it.

Someone should say something. Someone should tell him it’s okay, that he’s perfect, that we knew things would be tough and that they likely always will be but that we will get by. Together.

Isn’t someone going to say something?  Because I am doing all that I can just to hold back from letting out this sob that is building up in the back of my throat in the seconds since those words came out of his beautiful rosebud mouth just dripping with sadness.

But it is only me in the car with him.  And Parker.  And I am supposed to be the one to soothe him, to tell him…what on Earth am I supposed to tell him?  That it will be fine? That it sucks? That I’m sorry?

I thought we had more time.

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I thought that we would’t be here yet, that at four years old, this boy – my beautiful boy that finally definitively learned last week that he is a boy, that can remember that my name is “Jamie” but still can’t consistently recall his father’s name, that thinks that the thing he poops out of is called his “tushie” and the thing he pees out of is also called his “tushie” – well, I thought we had more time.

I thought he had more time.

More time to walk through this world oblivious to having Cerebral Palsy, more time before he was aware of the cruelty that the cocktail of fate or genetics or bad luck or me not taking my prenatal vitamins regularly enough served up to him.

That was another of our “silver linings” – of the platitudes we told ourselves about his cognitive deficits, about how, At least he doesn’t realize it.  At least he’s not aware of all of this – that he’s different – that most kids don’t have to work so hard just to get through each day and that it is not normal to have eight hours of therapy every week.  At least he doesn’t realize that he’s different, we told ourselves and each other. Thank God for that.

But he knows now.  Something that revealed itself on our drive to school this morning when Parker told me that Owen doesn’t look so good.  I peered at him through the rearview mirror half-expecting him to be some horrendous shade of green, but his coloring was fine.  I assumed it was likely because he was still upset that Scott told him he couldn’t wear his Oscar the Grouch watch to school today.  Seeing this as an opportunity for good communication between them and a chance to have Owen talk about his feelings, I suggested to Parker that she ask him what was wrong.

Owey, What’s wrong? She asked sweetly.

I sad. He replied.

Why are you sad? She pursued.

I sad because my legs no work so good. I no run fast like Parker. My legs no work.  He responded.

I think I gasped. Quietly, but it happened.

And then Parker saved me.  This five year old who knows – my God does she know more than she ever should have to, than any of us should – she saved me. She just jumped right in and she gave him the best pep talk I’ve ever heard.

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“No Owey, you’re going to be really fast one day.  You can grow into my sneakers soon and I’ll give them to you – even though they’re pink – because they light up and that makes people really fast.  And you should ask Daddy to help you with your running skills.  Daddy’s really good at stuff like that.  I bet you’ll even beat me one day!”  She told him.

Telling her little brother that one day he would beat her in a race was the very height of generosity for my girl.  For this little thing that has problems of her own – arthritis and sensory issues plaguing both her strength and her self confidence – her speed is the one physical trait she treasures and takes pride in.

And she gave it to him.  With absolutely no hesitation, no reservations.  She gave him that.

I thought she had more time.

Before she needed to start giving him pep talks and worrying about standing up for him and explaining things to him and for him.  She’s only five.  She’s not even in Kindergarten and somehow she just knew that he needed this.

And then we pulled up to his school, and I dropped him off, letting his therapist know that he was feeling a little sad today.  He kissed me goodbye and looked at me with those clear blue-green eyes of his, the ones that always make people comment simply Those eyes!, and they were cast down a bit – no smile crinkles at the corners, no usual sparkle.  Something in him had made the connection and he was feeling it.

It’s when you know that thing that you can’t un-know.

It’s when you see that look in your child’s eyes that you can’t un-see, or you hear that profound sadness in his voice that you can’t un-hear.

It’s unbearable.  I ache for him – for his little heart that knows now.

And I dropped Parker off a few minutes later at her school, having turned to her at the first red light to tell her how incredibly proud I was of her.  How she showed such generosity, and grace, and love towards her brother in those moments.

And then I called Scott as I pulled out of the driveway of her school, and told him what had just happened and finally set free all of those tears that had been impatiently waiting to be shed.  And I wondered aloud what we were going to do, what we were going to tell our boy, how we were going to explain all of this to him.

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I have cried on and off all morning – thinking about that conversation this morning and the conversations that are inevitably going to follow it.

And I still have absolutely no idea what to tell him.  There are things that a hug and a kiss can’t fix.  That I don’t know is the only response to, and yet still grossly insufficient.  There are I’m sorrys that I want to utter quietly to him, that I want to scream and cry in frustration for him – wanting him to know that I’m sorry this happened to him, that he didn’t deserve it, that I wish it had happened to me instead – all the while making clear to him all the reasons I’m not sorry – not for a single second that he is mine, that I wouldn’t want anyone but him to call my son, that there have been four long years now that he has made me proud each day without ever knowing why.

But he knows now.

I thought we had more time.

5 Compliments You Need to Stop Giving About Children with Down Syndrome

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People are awesome. Everywhere we go, my three year old daughter who has Down syndrome is a freaking ROCK STAR. People make a special point to come up to her and say ‘Hi’ and love on her a little bit. It’s really great.

Mostly.

Then there are times…well… that well-meaning, very nice people say things that just drive me crazy. I know that they are just trying to be nice. But whether it’s because I hear these things all of the time, or because they just aren’t the reality of the world I live in, there are a few compliments that make me batty…

1. “Children with Down syndrome are a gift from God.” This one is not untrue, and it doesn’t really bother me…I just hear it all of the time. A lot of the time, they tell me this while my other children are standing with me. I want to lean down to my boys and say, “Did you hear that, just kids without Down syndrome. Suckers.”

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All kids are gifts from God. The other thing that gets me about this is that by saying this, I feel like children with Down syndrome are put on a pedestal. I shouldn’t be complaining about this, but that pedestal further separates her from her peers, and honestly, makes me feel like I can’t just say she’s being a bratty three year old from time to time. People act like I’m committing sacrilege when I talk about my daughter like any of my other kids when they were toddlers.

2. “She’s so happy and easy all of the time!” My daughter is pretty happy. You know what? She’s about as happy as ANY of my other non-chromosomally enhanced kids are. Stereotypes do exist for a reason, and generally, it is seen that people with Down syndrome are happier in nature. This does not mean that they are happy or are easy all of the time. Abby is 2, and does what other kids her age do: throws tantrums, gets into things, colors on EVERYTHING, breaks stuff and freaks out. She has her own personality and can get mad as hell at you if you give her cause. One of my friends said something about her own child with Down syndrome that made me laugh: “She has Down syndrome, not a freaking lobotomy!”

3. “She hardly looks like she has Down syndrome!” Uhm? Yeah she does. She has a mixture of mine and her father’s features, expressed with the presence of that extra chromosome. She has all of the “classic” features of Down syndrome: the almond shaped eyes, the low set ears, and the lack of bridge in her nose. Saying that she doesn’t look like she has Down syndrome actually stings a bit. It feels like you’re trying to say that she’s pretty in spite of her chromosomal makeup. I think she’s beautiful because of it.

There is a difference in saying she doesn’t look like she has Down syndrome and that you don’t notice her Down syndrome. I love it when people just see Abby. They just see my beautiful daughter

4. “Just think! It will be like having a little kid living with you forever! Your child will never grow up!” First off, this one just isn’t true. Adults with Down syndrome aren’t children trapped in bigger bodies. They have life experiences, they learn, they fall in love, they do just about everything other adults do. It doesn’t mean that she won’t need significant, ongoing care throughout her life. And, though being a parent is super rad…I’m not the kind of mom that gets all bent out of shape to think of her kids actually growing up. I want Abby to grow up. I want her to be independent. And she will be.

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5. “I could never do what you do! You’re my hero!” GROAN. This is one of the biggest loads of crap I hear. I mean, I know people think that’s what I want to hear. It’s not. First off, how do you know you couldn’t do this? Had I been told that I’d be a mother of four kids, 2 with special needs, I would have said, “Yeah, no. Not me,” and run screaming from the room. You don’t know what you can handle until you get there, and until handling it is your only choice. Telling me that I’m your hero puts me on an impossible pedestal, too, that I can’t and won’t live up to. I’m a regular mom in an irregular situation. But these are my children, and I love and fight for them just as much as any other mom does.

Like I said, people are great. I’d rather have people tell me these things than the litany of shitty stuff people have said about her Down syndrome. I understand that people don’t know what to say and are just trying to be nice. And I love them for that. The worst thing you can say to a mother of a child with Down syndrome, by far though, is nothing at all.

Related post: I Never Knew I Wanted a Child with Down Syndrome

Childhood Apraxia of Speech: Living in Silence

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JamesPhoto: Jessika Savage

If you had asked me what I envisioned motherhood would be like when I was pregnant with James, I, like every parent in the world, definitely would have described a very different world than the one I live in today. I probably would have told you James would be an only child, but SURPRISE when I was exclusively breastfeeding my baby who was a product of fertility treatments, I got pregnant!  I probably would have described how my home was going to be full of books and questions. I would have told you about how I would patiently explain the answers to the world of questions my perfectly clean, and articulate two year old had to ask.

Fast forward two years later, and my world with my little boy – well… it’s silent.

For me, the most outspoken, overly analyzing, over explained girl I’ve ever met – the silence it’s deafening. In my world, my child was born without the ability to speak. My son has something called Childhood Apraxia of Speech and his case is considered severe. In the best description I can give you, my son has a hard time with motor planning – meaning he understands everything, he even knows exactly what the words he would like to say sound like, but somewhere in that little brain of his there’s a misfire and he can’t make the muscles in his mouth make the sounds. He is literally trapped in his own little brain, desperate to tell me what he wants, thinks, knows, and feels, but totally and completely incapable of even calling out my name. This leaves my little guy miming, and pointing and grunting.  It leaves him frustrated sometimes to the point of crying, and sometimes he just gives up trying to tell me what he wants me to know. It makes my heart break a little more every time I watch him give up trying to show me what he wants or needs or has to say.

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The outlook is pretty unsure. I’ve brought James to numerous pediatric neurologists, developmental pediatricians, speech language pathologists, and a variety of other professionals. They all tell me his cognitive testing is way above average and they all tell me he is not autistic (this was my original fear, and apraxia is very often misdiagnosed as ASD). But the questions no one has answers to are the daunting ones…Will he talk? When? Will we be able to understand him? Should we teach him to sign? (We do sign) Should we use an iPad communication program? How will I actually know if he knows how to read? How do you potty train a nonverbal child? Can he go to a regular public school? Do we need a special ed school, or will Montessori work? Will he be able to make friends?  How much therapy does he need? Will insurance cover it? Can we afford it? What causes this? Could my other baby have this too?  They also can’t answer the big questions about my child I wish I knew the answers to…What kind of ice cream does he prefer? Does he want milk or water? What’s his favorite color? Does he feel okay? Is he scared? Why is he crying?

I hate to make this sound like it’s about me, because my world is all about James, so much so that I have to remind myself to make sure my younger baby goes to a music class or to a play group of her own because she is so often just dragged around to the millions of appointments I bring James to. Sadly, I know someday she will be one grade behind him, his baby sister, but she will likely have to speak for him, because he will not be able to tell someone what he wants or needs, or he will make a sign or a sound that maybe we know in our little home and family, but no one on the outside would have any idea what on Earth James is trying to say. And with those thoughts, I cry for both my kids, because they have each other, but also because James will have to find his own way or make one in this world, because it is a long and scary road ahead.

With all of this though, we have a happy home and family. I have also found myself to be more of a fighter than I ever really thought I could be. I admit that on most nights my husband rolls over to find me deep in research, looking for a new doctor, a new treatment, the right school, the best options, on those nights he finds me feverishly typing away, making a plan and figuring out how I can make that plan happen for my kids. After the really bad days my husband rolls over to find me not tucked in our bed but sobbing and hopeless in the dark on the bathroom floor, deeply wanting to keep the sobs and hopelessness as far removed from my kids and family as I can.  On those nights I feel like I understand James the most, that I truly get how sad and scary and lonely it is to be screaming out for help to have no one know what you are saying. On the mornings after those nights I pick myself up, I wash my face and I pick up my kids and I hug them as tight as I possibly can, I take their little faces and kiss them all over until they are giggling uncontrollably and pushing me away. I remind myself that I am hopeful, I’m a fighter – I will find a way.

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There are a few things that give me hope. I am blessed with more amazing friends than any mom could really ask for, friends who love and support my family, and friends who know when and how to make me laugh, and when I need a stiff drink!  My husband is one of the most likable people on the planet (me, not so much!), and somehow James inherited that trait from his daddy. James has a goofy little grin, he loves babies, and he shares well. I can’t take credit for any of these things, as I still don’t share well. I was blessed with a neighbor two doors down from me who is my real friend, the kind of girl who really appreciates a sarcastic comment, and who is always a good drinking buddy. She also has a little boy who is six months older than James, and her little boy, Max, gives me true faith in human beings and the kindness of children. Max is quite possibly the exact opposite of James in many ways. He is the most verbal two year old boy I’ve ever met! He speaks in complete and totally understandable sentences, and he talks nonstop.  And maybe because of this, Max and James are best friends. Max is constantly asking to show James things, to play with James, to come to our house, for us to come to their house. Max plays nicely with James, they share their toys, they show each other things. Somehow in these interactions Max is the narrator, explaining every step and detail to James and the world, and James is laughing and understanding and not saying a word.  I hope Max will always be that friend to James, I hope they grow up to be lifelong friends. I am thankful every day for the kindness of that two year old down the road, he makes my little boy’s life better and we love him.

I also will say I’m lucky enough to be pretty good at a lot of mommy stuff. I can breastfeed like a champ. I cook all the meals in our house and I love doing it.  My friends never want their husbands to hear the huge menus I plan and execute upon my husband’s request or because something good was on sale.  I can trek two kids anywhere, and it never seems hard. I can handle a fussy baby, and live on very little sleep.  I love children. I love children’s books, and have taught hundreds of kids to read. Finger paint, and play dough and colored pasta – I make all that stuff.  I know a lot about schools and was a teacher in my younger days.  In college I tutored poor kids, and usually ended up with the downtrodden kid on my lap teaching him letters and sounds.  I spent my teenage years babysitting for every child in town, including a family with 5 children under the age of 6, I adored them all. I remember my dad saying to me just before James was born that he knew I was born to be a mom.  I believed that too, I never had a day in my life when I didn’t want to be a mom, and not just any mom, but the best mom.

Now that I am a mom, and not just any mom but James’ mom (Anna’s too), I know that everything I ever did in my whole life was preparing me to be James’ mom. Come hell, high water, or kindergarten, I will find the best way to fix this for my child.

Related post: What’s Normal?