You Know You Are The Parent….. — 5 Minutes for Special Needs

You Know You Are The Parent…..

by Tammy and Parker



                               

Okay. After of week of lacing up my Army boots and marching head first into the battle of getting Parker the proper vent for his needs, I’m ready to have a light hearted moment.

Or several.

How about if we create a list of how ‘You Know You Are A Parent Of A Kid With Special Needs.’

I’ll start. You guys join in down in the comments section, k?

You Know You Are The Parent Of A Kid With Special Needs When:

* When shopping for kids clothes, you don’t just look at how cute an outfit is, but if it’s 100% cotton, has tags, that can be easily removed, is hard to take off, can fit over AFO’s and feeding tubes, is trach friendly, and covers an ostomy bag well.

* You know the “good vein”, and what color vials they will need for the blood draw.

* You buy 24 month size jeans for your 4 yr old and call them board shorts, because he is too skinny for anything else.

* Your four-year-old’s medical file is over five inches thick.

* When walking down the hall of you local children’s hospital, everyone from doctors to the cleaning staff, addresses you and your child by name.

* Residents come into your hospital room to ask what certain words mean so they don’t have to admit to their attending they don’t know what in the heck a plain old mom is talking about.

* You say things like, “Don’t lick the cat” (Or the doorknob, or the t.v. or the….)

* You don’t go into a restaurant with your child without checking to see if it has the one item he’ll eat. And you might even want to take a look at it to make sure it’ll be acceptable to him.

* By the time you go through the whole stuff-gathering kid-loading getting-into-the-car ritual you’ve forgotten where you’re supposed to be going.

* All foods are finger foods — including soup.

* You find yourself walking down the street in the middle of winter, bundled all up, trudging through the blizzard, but carrying a toddler coat in one hand.. and holding the hand of a jumping, twisting, hopping toddler in the other.. and that toddler is wearing a short sleeved shirt and shorts.

* When you learn not to talk out loud about the future. EVER. Because when there is no concept of time, saying “Tomorrow we’re going to the playground.” just means that you’ve now ruined your today. (Playground! Playground! We go! Playground!. No. Tomorrow we’re going. … PLAYGROUND! PLAYGROUND! PLAYGROUND! PLAYGROUND!. A daylong tantrum follows)

You have the evil eye good and ready for anyone in your house that violates this Talking About The Future rule.

* Your kid eats his dinner while jumping on a trampoline because he’ll eat non-white food that way.

*Your child has had so many x-rays, CT scans, MRIs, ultrasounds, and radioactive contrast studies, you wonder if he will start developing some kind of funky superpowers.

* You laugh hysterically when people say “Don’t worry if he doesn’t eat. He’ll eat when he gets hungry enough”.

* Your house is always the meeting place for everything you are involved in and all friend gatherings. Everyone just accepts that because they know that your house is already set up and it’s just easier than running down the list with you on what to put away, clean, lock up, leave out, bolt down and serve.

* Despite it all, you wouldn’t trade your kid for the universe.

(You can read more here.)

Now it’s YOUR turn. How do YOU know that you are the parent of a kid with special needs?

When not busy doing battle with insurance company and home health care reps, Tammy and Parker can also be found over at their other blog: Praying For Parker.

Email Author    |    Website About Tammy and Parker

I am the mother of 5 wonderful kids. My youngest, Parker, is a medically fragile blessing with Down's Syndrome. I am @ParkerMama on Twitter.

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1 Heidi September 27, 2008 at 3:34 pm

I can relate to the clothing issue and of course, to everyone coming to my house.

2 Christine September 27, 2008 at 3:44 pm

When you always play host to your children’s friends, so no other mom will have to take your child to the restroom, bathe them, or dress them after a sleep over.

3 Debbie Yost September 27, 2008 at 3:59 pm

You speak in alphabet: IEP’s, PECS …

You no longer buy a toy because it is cute, you need to know what fine or gross motor skill it will teach her, hand strengthening or problem solving.

You find yourself constantly telling people and other children she is 3 and NOT A BABY!

🙂

4 Ecki September 27, 2008 at 4:01 pm

Oh, I love these. Thanks for the link, too. They gave me a good smile.

For us….

Sand is a food group. So is dirt. We’re tyring to make sure poop does not become a food group.

You kid will eat grass and leaves but not vegetables.

Pasta must be the correct brand AND shape. Otherwise it doesn’t get eaten. And your kid would rather starve than eat pasta that’s not correct.

You’re convinced that the annoying kid in Polar Express has Asperger’s. So does the little brother in A Wrinkle In Time.

You house is covered with labels and photos of objects.

You shop for toys by wondering how therapeutic they are.

You run up to strangers who have a kid “like yours” and talk to them like they are old friends!

5 Catherine Levy September 27, 2008 at 4:51 pm

I know that I am a parent of a kid with special needs by:

~making sure his clothes don’t have zippers, buttons, snaps

~making sure we stick to a routine

~his loud voice everyday, there is no such thing as indoor voice or whispering

~ not being able to take him into certain stores

~the special restricted diet he is on

~how he is different from other 4 year olds

~how he has no sense of fear in him

~how he is able to be there holding your hand one second and the next just evaporate

There is my list for you…thank you so much for this blog :)!

Hugs,
catherine
http://www.mystampinggrounds.blogspot.com
catlevy@eastlink.ca

6 Melody September 27, 2008 at 5:29 pm

…when I LMAO reading these lists! (because I live them) 🙂

Thanks, Tammy. I needed to be reminded to laugh today.

7 Awesome Mom September 27, 2008 at 5:36 pm

When your kid can operate the vitals machinery better than the student nurse that is trying to take his vitals.

8 Finding Normal September 27, 2008 at 7:21 pm

I did one of these a few months ago.
http://debbie61497.blogspot.com/2008/03/fun-with-abbreviations.html

My favorites are
Knowing the secret spots in the children’s hospital-which showers are best, which stairways get you to your child’s room fastest, which vending machines have Cheetos, and where the best spot is in Day Surgery waiting room.

Having complete strangers (staff of all types) come to your child’s room to check in with her when they “hear” she’s inpatient.

Having people call you to ask who is the best urologist, eye dr, ENT, etc. because they know you’ll know.

9 Trish September 27, 2008 at 10:16 pm

What a great list, and thanks for the link! I really needed a smile today. 🙂

Here’s a few more:

When you cringe at the sight of a detour sign because you now have only seconds to explain the situation to your child and avoid a meltdown because you are taking a different route.

When you know what joint compressions and deep pressure are, and how to do them.

When you are amazed to the point of tears by the complexity of social interaction engaged in by a typical six month old.

10 nancy September 27, 2008 at 10:43 pm

For use we are still on a bottle because we need the calories.

I know exactly what he weighs in Kilo’s

You tell them you will need a extra paper when they ask what the diagnosis’ in the ER or a new doc because the three lines won’t be enough

When they say that is a “rare” thing. It won’t happen… it usually does. ( a 2 peat on a cranio recontrucstion. Shunt breaking into pieces)

I have a billion more I swear

11 Susan (5 Minutes for Mom) September 28, 2008 at 2:02 pm

That’s a great list Tammy!

Since I’m not a mom of a special needs child, I can’t relate to most of those… but as a mom of a picky eater 3 year old I can still relate to

* Your kid eats his dinner while jumping on a trampoline because he’ll eat non-white food that way.

* You laugh hysterically when people say “Don’t worry if he doesn’t eat. He’ll eat when he gets hungry enough”.

I’m glad you were able to laugh today!

Thanks for the humorous peek into your life.

12 Barbara September 28, 2008 at 4:09 pm

Maybe Jeff Foxworthy could help this list go to print?

13 Ann September 28, 2008 at 5:09 pm

You know you are the parent of a child with special needs when:

you are pulling a sled with your one year old, your three year old and your five year old, all giggling… the five year old is in the middle with the one year old held snugly in her lap, and the three year old behind her holding on tight to make sure they don’t fall off…
and a stranger walks up to you and says, What darling twins you have! And the baby is adorable!

14 Teresa September 28, 2008 at 5:59 pm

You know you are the parent of a special needs child when –

*you just thought of 5 new things to add to this post and by the time you started typing, you forgot them

*when they ask you in the ER what medications your child is on you pause, wait for them to get their pencil and then ask, “Are you ready?” because you know how long and complicated the list is

*you spend every second in the store trying to find something you can actually buy for your child that they can use or that will “work” for them – besides socks

*you have to give all your child’s prescriptions back to the resident to rewrite because he did them all wrong and you can’t leave the hospital without those medications

*people look at you like you are incredibly insane when you hand them two 3 inch binders of medical bills that are sorted by month, prefaced by a summary page, color coded and individually tagged and referenced for the simple fact that there is no way you are paying one bill that you aren’t absolutely sure is a valid one! I mean, who can even afford the ones that are right?!

15 Ann September 28, 2008 at 6:18 pm

As soon as I hit the Submit button, I thought of half a dozen more.

You can find them here.

16 Tiff September 29, 2008 at 11:44 am

I’m there with you girl!! My sone will be four in a few months and weighs 28 pounds, wears 24 month clothes even though they are too big in the pants. And the eating. . .don’t get me started 🙂

when you have to make sure that the home you are visiting has replaced all there burnt out bulbs before you arrive or you will hear Fix it, go buy new one over and over for the next few hours. 🙂

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