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The Difference Between You and Me: Raising disabled children

In between loading and unloading Jumby's wheelchair into the back of my SUV for what seemed to be the millionth time in a day, (and I wonder why my back is perpetually on strike,) I had a conversation with a stranger about what my daily life with the Jumbster entails.

While there was nothing particularly special about this conversation in and of itself, what struck me as I was yapping is that I will be doomed to repeat this conversation over and over again for the rest of my life like some poorly scripted Canadian version of the movie Groundhog Day.

"I don't know how you do it, Tanis. I couldn't do it. Most people couldn't do it. Most people can't look past the disability and see beyond their sympathy and discomfort to parent a child like Jumby."

"Parenting a disabled child is so much harder than raising healthy children."

"You and your family are very special people."

I've been having this dialogue since the day I gave birth to Shale and with the adoption of Jumby this discussion resumed once again.

Miracle Children and Altruistic Parenting Part 17 trillion! Now available in Version 2.o, completely not new with absolutely no improvements since the first installment!! Whoot!

Early on in Shale's life, I had to make a decision about how to deal with people who had no experience in living with disabled children. I had to choose between being driven crazy from the ignorance around me, or being driven crazy from trying to educate and alter public perceptions about raising differently-abled kids.

Since I've always enjoyed the sensation of beating my head against a brick wall, I went with the latter choice.

I actively choose to take the time to try and dispel any misconceptions or myths about raising these rock star children because, well, someone has to. I do it not just because I have a soft spot for challenged children but because I am trying to teach my family and the world around me that just because you can't see the value of something doesn't mean it doesn't exist.

However, this week, I'm a wee cranky when it comes to repeating this conversation, mainly because no matter how many times I repeat myself, there will always be another wave of new people crashing against my shore who will need to hear our truths.

There will always be someone who sees Jumby and looks away in fear or disgust. There will always be someone who can't see his beauty beneath his drooling smile or slumped frame. And just like there will always be people who insist on using the word 'retarded' in a derogatory manner, there will always be people who can't fathom the love and rewards involved in raising these children.

This saddens me, especially when the real untold truth of the matter is, these children hold the secret of true joy and pure love clutched tightly in their tiny twisted hands.

Or in Jumby's case, he keeps the joy hidden in his new spanky casts.

The real secret to raising handicapped children is there is no secret to raising handicapped children. Like healthy children the basics are the same. You feed them, water them, shelter them, love them, clean up their messes and hope like heck that they leave your heart intact at the end of the day.

Just like you would any child.

My husband and I didn't plan to raise health-compromised children. The only thing we planned was the orgasm that gave us said kid and even that was more of a 'playing it by instinct' action than any real choice.

When we discovered our third-born was severely disabled, we did what anyone would do. We cried, whined and railed against the injustice of it. But once the tears ran dry we got down to the business of raising our baby. The same way we raised the first two children we hadn't planned (to this day I still don't understand what birth control is).

Raising Bug was different from his siblings only in that he came with more equipment and different expectations. It required more patience, more prayer and a completely different set of milestones. And while the mechanics of raising a medically fragile child were different than raising a robust child, it felt the same. Triumphant, frustrating and rewarding. With a heaping side of guilt and self-doubt.

So it was an easy decision to choose to adopt a special needs child after Shale passed. And while we blindly ticked off every box describing every available handicap known to mankind when we filled out our adoption application, neither of us actually thought we'd end up adopting a child who had every darn disability known to science. But when Jumby came to us, we knew that regardless of how many disabilities he had, or the severity of those disabilities, we could do it and it wouldn't be any more frustrating than trying to convince my 12 year old son to embrace personal hygiene and use some darn soap.

Most people believe they can't raise children with disabilities simply because they never had the opportunity or experience to be around them. People fear the unknown. I, personally, was less than enthusiastic about Bug's diagnosis when I learned about it because holy cannoli! I don't know what to do with a disabled kid! I can barely handle the two healthy kids I have now!

But the thing is, I adapted (sometimes willingly, sometimes less so,) just like most people would. For every mother who gives up and ships her child to Russia with a note saying she doesn't want him any more because he's broken there are a thousand parents who rise to the challenge of learning how to parent a child with a disability.

In the end, parenting these children is not a whole lot different than raising healthy kids. Yes, there can be moments of extreme stress but those moments are guaranteed with healthy children too. Life comes with no safe guards and no assurances and it doesn't matter how many precautions you take, bad stuff still happens.

Children die; children get hurt. Monsters hide under everyone's bed no matter how many times you try and shine a light on them.

But what kind of life would any parent have if we focused on the fear of the unknown instead of embracing and appreciating the known?

The day-to-day aspect of my family to yours isn't all that different. We have temper tantrums and laughter just like regular families. Sure I have syringes and pumps, wheelchairs and standing frames littering my house, but I also have a mountain of dirty socks waiting to be washed, posters of sparkly vampires tacked to bedroom walls and the sounds of Justin Bieber ringing in my ears.

Some people take their kids to dance recitals; I take mine to the hospital for Botox.

Instead of running myself ragged driving my son to soccer games and football practices, I'm chauffeuring him to clinics, hospitals and medical supply shops. You are buying helmets, shin pads and crotch protectors; I'm out grabbing medical diapers, hearing aid batteries and medical grade plastic tubing. Either way, we are both spending more time road running than a taxi driver and we are both going to end up with less money in the bank.

Parenthood. Ain't it grand?

And while I like to think my family really is the cat's meow, I'm pretty sure every parent feels that way. It is mandatory just like its mandatory kids won't eat anything unless it's covered in ketchup.

Parents to disabled children aren't saints or any more special than the parent that has ever had to pick the snot out of a crusty nostril or spent the night awake worrying about their child's safety. We are just regular parents who are lucky enough to love extraordinary children.  We are all heroes to our children, and if we aren't then we need to try harder.

So I explained to yet another person, once again, for what was the umpteenth time, that raising Jumby isn't so very different than raising Sally, Jim or Sue. To the untrained eye it may look like Extreme Parenting (minus the eating live bait or chicken testicles) but really it's not.

(It's more like Survivor: Parents vs. Children, No Holds Barred.)

Our routines may be different than yours and certainly more complicated and time consuming than most, but in the end, it is just that: a routine. One filled with laughter and love and a heaping spoon full of sugar to make sure all the medicine goes down.

Just like our kids, our families may look different on the outside, but I promise you, the love feels exactly the same.

I am inviting you all to stop peering in from the bushes and come on in to see exactly how alike our chaos really is. I promise you, we don't bite.

Well, okay, Jumby totally bites but he does it out of love.

Mike Tyson ain't got nothing on me. I'll chew anyone's ear off, in or out of the ring.

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Reader Comments (144)

You forgot one important part...we special needs parents do have a LOT more hope (and rightly so, In my quite humble opinion-- *snort*) than anyone. AND, we fight like hell all the time.

And who REALLY likes to sleep anyway?

Hugs. Back to lurking...

April 29, 2010 | Unregistered CommenterHeather

I'm thinking, you might much more enjoy someone coming up to you while you're wrestling with the wheelchair for the umpteenth time and saying "Say, can I give you a hand with that? Cute kid! Have a nice day."


Kids are kids. Parents are parents. Even among those with "normal" *Snort* kids, each of us face different challenges.

You just get on with the business of living.

April 29, 2010 | Unregistered Commenteravasmommy

My favorite post of the day - such a true message.

(And I read a lot of posts a day!)

April 29, 2010 | Unregistered CommenterMegan (Best of Fates)

People never get what they don't have. Judge. Fear. Condemn. Fuck it all if we can't just say, "Here's to joy in whatever form it takes."

April 29, 2010 | Unregistered CommenterAmanda

Well said, Lovey! And great picture! :)

April 29, 2010 | Unregistered CommenterAli @PickleSugarPlum

When we had the Little Man, they asked us if we wanted the genetic testing - we said no, because what would it change? Either way, we were getting a kid we just knew we'd love to pieces.

April 29, 2010 | Unregistered CommenterDomesticated Gal

I understand everything you say here and, I have to admit, it makes me have an even bigger crush on you. I've been struggling to write about having a child formerly with disabilities but now all [mostly] better. It's a strange side of the road to be on. But I used to hear it a lot: "How are you not falling apart right now?" and I'd respond, "You know what? That's not an option."


I love the last picture and caption. That is seriously funny.

I do know it's not fun being the "spokesperson" regardless of the subject and I know it is trying to have to keep doing it over and over and over again.

April 29, 2010 | Unregistered CommenterBeth

I could have totally written that post from 1997-2004(well, if I could write, that is) when we parented our severely disabled child, Noah. Your post made me cry with all those things I so desperately miss about him...the smell of pediasure and slobbery kisses, the counter/cabinet of medications and supplies, the friendships of hundreds of doctors/therapists/teachers, and the unconditional love. I so miss my Noah now....thank for you reminding why!!

April 29, 2010 | Unregistered CommenterJene6kids

Seeing that face every day must be a great feelling! What a smile!

April 29, 2010 | Unregistered CommenterMo

Amazing post !! )

April 29, 2010 | Unregistered CommenterKim

My husband and I lost a baby to anencephaly 6 years ago. She was our only child together (we have two kids, but are a blended family). Anencephaly is closely related to spina bifida, just differing on where on the neural tube the abnormality takes place. My husband said to me, "thank God that didn't happen, because it would be so hard to raise a disabled child". Sounds bad, but I know what he means... the loss of dreams, the reality of the diagnosis. But I would have given a lifetime of raising a child with a disability over the loss of our daughter.

As it turns out we ARE raising a child with special needs, only hers don't require special equipment, and are not visible to the naked eye. Her problems are hard to diagnose, and leaves us exhausted, frustrated and feeling like failures. Sometimes I wonder if it would be easier if kids like her were purple or something, or like had a button that popped out like a turkey when it is done. Because people would know that she has a disability, and not look at us like we are horrible parents.

Anyway, What I meant to say, but got horribly off track, is that parents are parents. We all do the best with what we have, and what we are blessed with. Each life is special and brings its own gifts.

April 29, 2010 | Unregistered CommenterErin

Amen, sister! My son has autism, and while we don't have many physical challenges to deal with, the behavior- and speech-related public stares and questions are most definitely there. And, we do have the therapist and special supplies merry-go-round that you describe so well. I always read your posts, but this one struck a special chord. Thanks, Tanis.

April 29, 2010 | Unregistered CommenterMelanie

Can I just say I love that picture of you and Jumby? What a ridiculously cute kid :)

April 29, 2010 | Unregistered CommenterJean

Awesome post! I have worked with children with all kinds of abilities for years and then gave birth to a child with heart disease. I have never had a "perfectly healthy child... so I only know the love I have for my son. The greatest love I have ever know. I truly believe that in the grand scheme of things... you get what you're supposed to: Boy, girl, tall, short, or diseased heart. What ever he is... he's mine, and he ROCKS MY SOCKS!!!

April 29, 2010 | Unregistered CommenterYahee

Nice rant and perhaps a kick in the ass for some of us who tend to marvel because, as much as we think we get it, really don't and don't know what to do about it. You just make me feel so damn ..... inadequate. And I do love that last photo - that face is a thing of beauty. Oh, and Jumby's cute, too.

April 29, 2010 | Unregistered Commenterbeachcomber

I'm glad you posted this. It didn't feel ranty (per your tweet). When my husband and I filled out our foster parent paperwork, we did not check any of the disability boxes because we didn't think we could handle it. You have erased some of my fear about it.

April 29, 2010 | Unregistered CommenterPeeved Michelle

I still think you ARE special! And good LORD Jumby has got a beautiful head of hair on him! Have you considered doing Locks of Love with it? I would love to have his hair and I have my own :P And, by the way, I'm a little peeved that the fancy casts Jumby got wasn't an option when I was young! All we had were solid colors :)

I have missed you, as I'm sure everyone else has. I check a million times a day to see if you have written something. I know that nothing in your life is our business but it's hard to see a friend in need of support and there isn't much we can do. I love you and am happy to see that you still have a smile on your face.

April 29, 2010 | Unregistered CommenterJamie

That last picture and the caption are responsible for today's biggest smile!!!

Love this post. Parenting is parenting, we all do it a little differently, but in the end it is about our kids.

April 29, 2010 | Unregistered CommenterLisa

Wonderful post! My special needs nephew uses his disabilities as an excuse to hug every large-chested women he comes into contact with (alright he hugs any boob-sized women he just prefers large-chested!)

April 29, 2010 | Unregistered CommenterErin R


April 29, 2010 | Unregistered CommenterCassie

I adore you and this post. That is all.

April 29, 2010 | Unregistered CommenterIssa

Ditto on Peeved Michelle.

April 29, 2010 | Unregistered CommenterAmanda

I just have to comment on the picture of you two. How adorable IS that kid??? :)

April 29, 2010 | Unregistered CommenterJen

Thank you for giving us a window into your world. It is enlightening, witty, and very valuable. Sending hugs.

April 29, 2010 | Unregistered CommenterErin

You amaze me and you amaze my boys. The little o e has a super big crush on you.
Jumby is certainly very lucky to have become a part of your family, but I have a feeling you're feeling just as blessed. That beautiful Tanis. xo

April 29, 2010 | Unregistered CommenterKaren

*little one*
silly phone. :)

April 29, 2010 | Unregistered CommenterKaren

Great post. I hope that you don't mind that when my 5 year old and almost 3 year old children ask questions, I actually have them ask the parent of said child that they are asking questions about. And 9 times out of 10, my two youngest girls want to go home with said child to play, as they, rightfully so, don't see anything but a kid that they think has cool equipment and wants to play with them.
Kuddos for you, not for having a disabled child, but for putting up with sometimes ignorant comments and questions. We love you. Keep on going!!

April 29, 2010 | Unregistered CommenterJessica

Beautiful picture-beautiful post.

My daughter has a physical abnormality (just a strawberry birthmark--hemangioma) and I was so shocked by the reaction of the public, very VERY few saw past the hemangioma low on her forehead to the beauty that has always been there. While our experience is completely different from those dealing with disabilities I do know one thing for certain, my daughter very much taught me HOW to see beauty.

April 29, 2010 | Unregistered Commentermelanie

I'm with you, sister. I personally don't know what families without stocks of syringes and tubing do for fun. If my 3 year old didn't use my 5 year old's syringes to feed her baby dolls, life wouldn't seem normal.

Thanks for writing this - it is completely awesome. Just like you.

April 29, 2010 | Unregistered CommenterAnna Marie

I absolutely LOVE the pictures of Jumby. He is exploding JOY out of every ounce of him.

Children bring more to our lives than we ever bargained for. More joy, more pain, more effort, more fun. More tears, more laughter. Whatever comes, you have to take it in stride. Sometimes you have to adapt. In my case the disabilities are invisible, but to the people who say "I can't imagine dealing with that" and "I don't know how you manage," I think "Are you fucking kidding me? Look how AWESOME my kid is! I'm the lucky one! I get to be her mom!"

April 29, 2010 | Unregistered CommenterMary P (Barnmaven)

Thank you for your insight-your honesty (as usual) is so refreshing! You have changed my thinking with this post.

April 29, 2010 | Unregistered CommenterLourdes

i hope to have your strength if/when i get there, no matter the 'classification' of my future children.

April 29, 2010 | Unregistered Commentermeredith

damn, that kid's got a gorgeous head of hair! :)

April 29, 2010 | Unregistered Commentercasey

Awesome post, Tanis. And Jumby...wow! he is one awesomely beautiful kid...love the amazing smile :)

April 29, 2010 | Unregistered CommenterLisa

I was clapping as I read this article (it's too good to be just a post).

I do hope that if we ever get to meet, Tanis - that I would see in Jumby something close to what you see. Of course I couldn't possibly understand EXACTLY what you go through in your day (though I would try to get my head around it).

I don't know, just as mothers who don't have a child with heart defect, cannot know what we heart mothers deal with either. All kids are different aren't they? Some just LOOK more different on the outside.

Wishing you a wonderful day filled with gorgeous candles (!) and lots of people who are interested and care enough to ask you about your life. (It's the ones that shy away from wanting to know anything that worry me.)

April 29, 2010 | Unregistered CommenterBush Babe

Tanis you inspire me to be a better mom and a better person- gosh darn Gumby is so lucky to have a mom like you in his corner

April 29, 2010 | Unregistered CommenterMelissa Chapman

I have a friend with a daughter with Downs Syndrome. My friend has said to me on more than one occasion, "Everyone should have a child like her; she teaches you patience." So I say to her what I would say to you; it's not just your daughter who is special. I believe the luck runs in both directions. :)

Some people and families have the ability and desire to adapt when their routine is about therapists and tubing instead of soccer and lego. However, we've all heard horror stories about handicapped children whose needs aren't met and who are subjected to terrible treatment.

Maybe the people who accost you in parking lots aren't really sure where they'd land if faced with the same challenge... a scary self-realization I'm sure.

All us parent-types would do anything for our kids, but I still feel that you and the other folks who have commented on their special-needs kids play a higher stakes game than some of us. The risk is higher for feeding tubes than yogurt tubes, eh? So will you at least let us admire your accomplishments and choices? Even if you don't feel there was a choice, that love drives the plan. Credit for coping, let's say. I feel the same way about my friends who are single parents; take pride in the fact that you manage to provide all the love and care that is needed.

After all, where would Jumby be without you?

April 29, 2010 | Unregistered CommenterHammy

Nicely said. I think those of us with special needs children aren't necessarily special people. We just saw a need, be it by giving birth to a special needs child, or giving a home to one. I'm not a better mom than anyone else because I advocate for my autistic kid, I'm just looking out for my child. Like (almost) every mom does.

April 29, 2010 | Unregistered CommenterStimey

Oh, he's just awesome.

April 29, 2010 | Unregistered CommenterValerie

I am a volunteer puppy raiser for Canine Companions for Independence (cci.org) here in California. We just had our first puppy graduate to become a Hearing Dog for a lovely woman who is slowly becoming deaf. I just wondered if you had thought about getting an assistance dog for your son. I know that the program here in the US is free to recipients, but am not sure if CCI is international. It might be something really beneficial for your son and family. I have seen disabled children matched with these dogs and it truly is a miracle what a difference it makes in the life of the child. Just thought I'd throw that out there - hopefully there is a similar program in Canada if CCI or other similar organizations are not available internationally.

Wishing you the best!

April 29, 2010 | Unregistered CommenterErin M

On the one hand, you're completely right — parents with special needs kids aren't extraordinary; they're just muddling through it day by day as best they can, just like everyone else with a kid. Are the challenges different and the anxieties and/or terror potentially deeper? Sure. But that whole "I could never do what you do" thing is total BS. If you had to... you could and you would. Trust me.

On the other hand... the idea that there's not something heroic in the way you've fought through all the insane awful stuff you've fought through (and continue to fight through on a too-regular basis) and not only persevered but somehow found within you the strength and impossibly huge love to bring more, more, more children into your life and the lives of your family? Also total BS.

Sorry. You're kind of awesome, Tanis. Might as well accept it.

April 29, 2010 | Unregistered CommenterTwoBusy

Lovely post! But it did bring me out of my lurking to ask a question...

I love my kids passionately (fairly average need kids) but I also love my work. I don't know how I would be able to emotionally handle having a special needs child if I had to quit work to stay home with my kids then. But it's difficult enough finding quality childcare and my job doesn't pay enough to hire a full-time nanny/nurse even if I could find someone I trusted.

Would there be other options??

I like to think I'd be okay with it, but I really love what I do (teaching college biology - if it matters, and I can't work from home, like some professions can.)

So basically, I think all parents (moms or dads - my husband stayed at home for a year) who stay home with their kids definitely have something in them that I don't have. Not that it's better or worse (I don't believe in the 'mommy wars') just that it's different.

To summarize: is it possible to have both parents work (oustide the home) and still be a good parent to a disabled child? If anyone out there is in this situation, I'd love to hear about it! The question is definitely not snarky or anything - I have just never heard of anyone who did this so I legitimately don't know if it's possible or feasible (for someone who's not rich, anyway.)

April 29, 2010 | Unregistered Commenterkate

I love this post. Love it.

I've often wondered how you ("you" being parents of special needs children) do it. I never meant it as a put-down or anything condescending. I simply didn't know how you found the strength. Your words made me understand so much more. Thank you for that.

You might think it's just what you do and you can be humble about it, but you are amazing. You inspire me.

April 29, 2010 | Unregistered CommenterMeg

First, that is one super-cute kid! I love that smile.

Second...I recognize it is _not_ the same thing, and I would _never_ presume my parenting challenges are the same as yours. I often get told "I don't know how you do it" because my kids are 5, 4, and 2. People would say it with fear in their voice when the 3rd kid was an infant - I had a 3 year old, a 2 year old, and a newborn. People were mystified that I was able to shower. I just tell them it's no different than having one kid. I'm not more busy, I'm different busy. I see your perspective of we're just trying to be good parents. Ok, I'll shut up now before I make myself look like more of an ass.

April 29, 2010 | Unregistered CommenterNikki

What a wonderful post. No kids here on my home front but I love reading about your kids. It sounds like you have a wonderfully normal family that laughs, cries, fights and loves just like everyone else. Keep doing what you are doing. Explain to people if you feel like it and don't explain if you don't feel like it!

April 29, 2010 | Unregistered CommenterJamie in Indy

First, awesome post. Good job there. Second, the only thing I can think to say is it's like when the OB asks if you want to do the special tests to determine if the baby will have any disorders. And all three times I shook my head and went "does it matter?" Third, omigosh that boy is just so damn cute and that smile!

April 29, 2010 | Unregistered CommenterKristin

You are a beautiful person. *Not only* for being the mother you are - to ALL of your kids - but for letting us peek in the window and watch you do it.

That was truly the most wonderful thing I have ever read in all of my life.

April 29, 2010 | Unregistered CommenterCorrie

This is the most beautiful thing of yours I have read. I hope many people read this.

April 29, 2010 | Unregistered CommenterJenn @ Juggling Life

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