Special Needs Parenting: Things I Never Thought I’d Say
I never imagined I'd be asking health care professionals for their permission to take their pictures and put it on a blog.
When I said, “Seriously, we’re not talking about anything else until you take your meds.” I realized there are so many things I say in the typical (haha) week that I couldn’t fathom saying before I was a special needs mom.
Like, “Put down that dead bird! You should never, ever, lick a dead bird! EVER!”
“We do NOT tease each other about our speech issues, got it?”
“Fine. Then I will drop what I’m doing right now and come and get the prescription.”
“You grab and hold her and I’ll do the shot. No matter what, do not let go and for sure watch her head, she got me last time with it.”
“He drew a picture with fire and a gun. Game over.”
“Should we just give him the antibiotics we have in the cabinet.”
“Fine. Just eat a grape for dinner.”
“What do you want for dinner? A, B, C, or D?”
“So basically I’m cooking 4 different meals making me a short order cook. Okay.”
“Grab the E.R. bag, it’s in the closet.”
“I heard a weighted blanket could help so I don’t care how much it costs.”
“They were both approved for a Make-A-Wish wish.”
“It’s school calling. It’s your turn.”
Oh, how the list goes on. One thing about parenting kids with differences is that I’m rarely shocked anymore when a parenting challenge or health challenge smacks us in the face.
What are the things you couldn’t imagine saying before you had this life?
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
A lot of our special needs came from my son’s extreme malnutrition from when he was in an orphanage. One night at dinner, I put my head down and cried, “Oh God! If I have to clean puke up off the dinner table one more time…” and I realized- ummm, a kid puking at the dinner table every night is not the norm! Yep- that’s one I never thought I’d say.
And I’m with you on the weighted blanket. Our OT kept saying, “But they are so expensive, I’m not sure you want to…” and I was screaming, “Just order it! I don’t care what it costs!” And it ended up being some of the best money we have ever spent on a therapy item.
Keep being awesome! I always love everything you write!
Yeah. Puke. I never thought I’d be comfortable with puke in my bare hands.
I sell teddy bear kits and they are unbelievable for any kid with sensory issues! I have 2 on the spectrum!They kids love them and they are so easy to take with you anywhere you go!!!
Weighted teddy bear kits! Sorry I should have specified that!
How do I find your site? I’m interested.
Her arm is on back order!
Yeah. I can’t imagine you or any other parent would ever imagine that one!
I love this one very much.
“Well, it’s cheaper and faster to just order the walker ourselves than to let Medicaid pay for it, so I guess we’ll do that.”
“I can’t meet you because she has PT that day. Oh, no, she has speech on that day. Well, we could work around the OT appointment, I guess.”
“Stop pulling off your feets, please.” (We call her SMOs “feets.”)
“Hooray, she now can say NO!”
All good ones, but since I know R, the last one is my favorite!
“He took his (prosthetic) eye out – hold his arms down so I can put it back in.”
Or:
“Thank heavens for his feeding tube – we’d never get these meds in him otherwise.”
These are GREAT ones. The eye? Bet you never thought you’d do that either!
Never thought I’d have to physically stop my son from repeatedly banging his head as hard as he can into a couch pillow or any other soft (thankfully) surface. My response is usually something like “stop banging your head!”
And on more than one occasion I have stated he’ll calm down after I swing him upside down for a minute.”
Well, because you never new you’d have to swing a child upside down?! And well, I’ve said the banging head one, too. We’re like related or something!
Walking in to my son’s out-of-state specialist appt in Richmond, my purse fell off of my son’s wheelchair onto the sidewalk. In a desperate attempt to locate it, my husband called my phone.
The couple that found my purse was a bit freaked out and wanted to know why I had a 60cc syringe in my purse.
“To pull air out of my son’s stomach through his feeding tube.”
Thankfully, they got it back to us!
Thanks for sharing your list! I can’t even really think of ours at the moment…but it’s there and it does help to hear from other families that have them too!
-Miriam http://www.arearrangedlife.com
The SYRINGE. Classic.
“I feel great. He only got up four times last night!”
At my daughter’s birthday party last month, the mother of her friend who has a trach said “yes, she is allergic to peanut butter, but don’t worry too much – I have an airway.”
Yeah, only up 4x sometimes sounds awesome! And the trach and your friend! I want to to mee that mom. Looking at the positive…
Food issues and psychological issues are the root of most of mine.
To a child with issues chewing food: “No more milk until you EAT SOME CAKE.”
“No eating while you are sitting on the toilet.”
“I appreciate that the people in your head are telling you that, but you need to tell them to be quiet now so you can listen to Mommy.”
I used to have to tell her to tell the people in her head to be quiet or to go on vacation a lot. I would totally forget it was weird until someone else would overhear and give me The Look, then I’d be all “haha, don’t mind me, just talking to my child’s pretend people that live in her head and tell her what to do…”
I have done that! I used to tell my son to stop talking to those people so you can talk to me! I definitely think the world in his head is soooo much more interesting than this “real” one we live in!!
These are ALL GOOD. And true. And a lot of them my life, too.
After 19 years I have tons:
1) yes I am sure that entire suitcase is full of medications
2) can you go grab a feeding bag
3) no he can’t swallow pills and yes they need to be crushed
4) are you sure he is allergic to latex as the orderly left a nice hand print on my son with his glove. This was 131/2 years ago when still had latex gloves
5) yes I know his stomach is not hard but yes he is still backed up as he hasn’t gone in 14 days -confirmed by X-ray and admitted
6) yes he still is on formula
7) placing monthly Order for medical supplies. I need 5 gtube extensions Mickey replacements for each. Yes same amount of formula
8) yes he can have a seizure every day even while on meds to a principal
Yes X 7 is all I can say.
“You’re right. The cat does need speech therapy.” (For his tongue thrust.)
I just thought of the look on my vet’s face if I suggested it.
Haha, good one. It’s true though, I do often diagnose people and and animals too
Honey, I know you want to go hug him- but we can’t hug everyone, now can we?
Would you please stop putting your finger in your airway. you want to talk wear your passy!!!!
Would you stop taking your gtube !! Your dripping stomach content all over the floor!
Can you go grab me a new nose, this ones full of snot or Grab me a new nose, this one flew off when she sneezed (her HME on her trach we call noses)
Hilarious. The airway…
If you didn’t say it you almost can’t believe it, huh?
My youngest son had a g-tube. Upon hearing that their cousin was getting tubes put in her ears for ear infections, my oldest (3 at the time) said, ‘but tubes are for tummies, not ears.”
I have also found myself using the Count’s voice (from Sesame Street) to count seizures. I thought it was to keep me from going bonkers but maybe it just proves that seizures in fact made me bonkers.
Our kids are smart, they are!
Oh catching puke with my bare hands….that is def something I never thought I would be doing 10 times a day 🙂 With 2 boys with CP I couldn’t picture myself saying most of the things I say every day before they came into our family….but here are a few good ones.
-Yes he is 2….and yes he is still in an infant carrier.
-Yes he is 5….and yes he still wears diapers.
-He is retching!! Somebody grab me a 60!
-No no….you can not style your hair with water from the toilet.
-Yes I am sure I don’t need to order him a kids meal or a drink…he doesn’t eat or drink by mouth.
-That gigantic bump on his head is a shunt….it saved his life.
-Poop is not a food group….or finger paint.
-That stuff is sterile….PLEASE don’t open it! –to the TSA at the airport.
I could be here all day haha 🙂
“My son is puking poop. Yes, I said poop. How do I know it’s poop? It looks exactly like what comes out of his rear. You don’t think that’s possible? Give him a few minute and I’ll have a samples for you to compare!”
To a resident, “How would you like me to put milk into your veins?” Response to why my son had both a g-tube and central line instead of just feeding him through the central line.
Ahh…only the experience of a parent could say these with authority…
Oh my goodness. Charlotte gags A LOT when anything gets in her mouth. She turns red and won’t breathe through her mouth. The other day, she was doing this and Pete popped the cap off her trach and said, “HA! Can’t choke now, can ya?!”
We both just looked at ourselves and laughed. Did he really just say that?
And, of course, there’s always, “I know I just rescussitated her, Doctor, but she’s breathing just fine now, do I really need to bring her into the ER?”
or
“What do you mean, ‘Why didn’t I call 911?’ I know what to do better than any of the EMT’s!”
Of course, we say a lot of “I love you’s” but I figured those would happen 🙂
Well, the range of things we say it so incredibly wide outsiders (“typical” parents) could never imagine…
resuscitated*
“your turn to hook up his feeding”
Sorry we can’t go anywhere for 30 minutes he just ate and will throw up in car
“stop laughing, you just ate, you will reflux and throw up everywhere”
Yeah…not with a feeding tube but my husband realized he was a good parent when he was eating french fries out of one hand and holding a throw up bowl in the car with the other.
My sons pulse ox stopped working in the middle of the night and when we called the on call for the supply company she tells me “we will ship it to you, you should get it in 2days”. Umm…he has a trach
Yeah, um, 2 days isn’t going to work!
Geez. Things we never thought we’d say.
To TSA – There are needles in that bag.
To every doctor after they ask if she’s had surgery or significant medical problems – I gave an ‘at-a-glance’ sheet to you on her medical history. Maybe you should read that before you ask me any questions and yes all of the medications are spelled correctly.
To what feels like everyone all the time – No she doesn’t eat. I have tried everything and seen every specialist. I’m sorry in advance but I don’t want your suggestions or advice since they have all said I’m doing everything they (10 professionals) can think of. And force feeding is not good for my child.
To my mom when after she was born – Don’t change her diaper every time she’s wet. Set her on a schedule because you’ll send us to the poor house if you change her every pee!
Make sure you pack the scale and her book so we can keep track of her I’s and O’s.
To family – Don’t throw away that diaper! Yes I know it’s poop but we have to write it all down!
And the ever present new person after they apologize that my daughter’s blind – Why is being blind a bad thing? I’m sorry you can’t see how amazing she is without sight, imagine if she had it!
All good, but esp love “how amazing she is without sight, imagine if she had it!”
My daughter (age 4 or 5 at the time) said a**hole. Perfectly. I wasn’t sure if I should scold her or applaud her perfect ‘s’ sound.
Rule is our house is to always applaud if it’s perfect sounding.
“Someone put the phone back together and call the police!” This after my daughter would take the phone apart in anticipation of attacking us.
Hurry up and finish puking. We gotta go.
Shut up already – to a non verbal child.
You’re fiiiiiinnnnnee. (100 times a day)
We’re almost outta drugs
Stop trying to lick your brother when he isn’t looking
Who pulled out the feeding tube (when finding a Mickey still inflating feeding the floor & both SN boys smiling up at me)
WooHoo a short seizure.
I’m not a parent, but as a dog owner, I’ve been surprised by some of the ridiculous things I have to tell my dog.