Educating your child about SB is important [Archive] - Spina Bifida Connection Support Forum

Avocado Baby

06-01-2010, 07:38 PM

Hiya,

I'm feeling a bit sorry for myself because of recurrent UTI so this might come across as whinging but I just wanted to say how important it is to educate your kids about SB and how everything works/doesn't work and is connected.

I love my parents and they've done their best for me. Noone has writes a manual on bringing up someone with SB but they've never focused on the medical aspect of it so I've only ever got to learn things through my own research. In a way, it's been great because I've been seen as Ali and not my disability but I'm pretty sure my UTIs are my own fault through not looking after myself properly. Some things I didn't see the importance of and I wish I'd had more explained to me.

I also got to understand the chiari and how it affects me by my own research so have been able to be kinder to myself about things I used to beat myself up about.

Don't get me wrong, it's not all down to not understanding things and I don't want to blame other people. I'm as much to blame but I think things would have been easier if I had undestood more.

What I'm trying to say is that I want to share with the parents/carers here that educating yourself and your child about SB is really important.

I hope this doesn't come across the wrong way. Feel free to delete it.

Dodger67

06-01-2010, 08:28 PM

I totally agree.
We sometimes see posts here from parents of kids with SB who are already a few years old (even teens), some of these posts indicate that the parents are are really shockingly uneducated about their child's condition. I wonder where the problem is when they are clearly not getting vital information from the medical professionals they deal with?

sean

06-01-2010, 09:05 PM

I beat myself up over UTI's also, what am I doing wrong! I feel dirty lazy. Some times I know! it's me (not washing/changing my bag daily, trying to get away with as long as possible) I'm just so over it, sick of it, I just want time ignoring it. A day without!

Education is ALL important, I come from a time of shame and secrecy, guess they were thinking ignore it it will go away??? It's very lonely, learning the hard way, no support.
I so agree with you, Parents please! educate your kids with the facts, never too young, talk and keep talking about it, A B C, Anus, Bladder, Colon. Some basic biology and specifically thier phisiology. Please be up front, open, honest, black and white, hide nothing (it's not protection). Knowledge is power, honesty the best policy, your kids will love you for it, 'eventually'

angel

06-02-2010, 03:57 AM

ABSOLUTLY!!!! Everyone should know how thier body works. Ours does some different things and it should all be explained. Again parents need to start early with this. My son knows exactly how his body functions. What functions correctly what functions differently and what has to be done to take care of himself. I started when he was little telling him to remind me when it was time to take his meds. Not that i didn't knwo myself but that was making him aware that it has to be done daily and making him part of the routine from the earliest possible age. He used to remind me every night at dinner (he had to have his milk after he finished eating) I used to hide his milk of magnesia in a glass of chocolate milk at that time.
Now that he is 13 he has taken over all that himself and has since the age of 8 or 9. He takes his meds at night after dinner (not hidden in milk anymore) and he knows to do his bowel routine in the morning before his shower. That way no problems at school. I can rest easy knowing that he has it down to a routine and i won't have to worry about it when he moves out of my home.

Angel

Gymp

06-02-2010, 03:34 PM

I agree too,educating the kids about their SB is very important and should be started as soon as possible...The more they know the better off they'll be.

For me,my parents had just immigrated to Canada before I was born and there was a big language barrier between them and the doctors.A lot of the time I had to translate what the doctors were saying after we got home from appointments.I will never fault my parents for not learning English quicker,they had came to Canada after WW2 with only what they could carry.They had lost absolutely everything in Europe during the war.They worked hard to keep the 4 of us kids housed and fed.Prior to 1964 they had to pay for most of my medical bills as back then there was no universal health care.

I think with the advent of the internet and computers being in most homes the education of parents and kids with SB will only get better.We now have the world library at our fingertips.Forums,such as what we have here,are great tools for the education of SB from the expectant Mom's,parents of kids with SB to old farts like me with SB.
Most of what I've learned about SB is due to this site.Being able to share life's experiences with SB with others around the world that have it too is truly remarkable.We're all learning!By the by...How's the "teen section" of this forum going anyhow???

I've read somewhere (can't remember where) that in North America one in four adults is functionally illiterate.If what I've read is correct that's one quarter of the population not being able to teach their kids about anything from written material.That's a big number.

I can't imagine not being able to read.

Gymp

leigh828

06-02-2010, 05:45 PM

Thanks guys! Grey is only 15 months, but I'm sure there will come a time when I will do something for him just to make it "easier" on him, when in reality, that will be making it harder. It's nice to read things from an adults prospective...so thanks! :)

Jilleyann

06-04-2010, 02:29 PM

This information is why I joined this site! My daughter just turned 2 and as I'm writing this she is picking at her breakfast of eggs, unable to use her spoon, because I've always just fed her. Luckily there is a PT and OT that is trying to break me of this nasty habit of doing for instead of showing how and I pray every day for God to show me how to make Madison independent, confident and just plain ABLED! A brief history she's my first and has the works, sb myelo with an opening so wide they needed skin grafts, bilateral paralysis and both of her hips are dislocated, with all the challenges my angel faces it's far too appealing to make everything I possibly can easy for her.

I appreciate the tips from everyone living with SB, I really want to learn the do and don'ts to being a supportive mom. As far as parents being educated (or not so much) on their childs diagnoses, well, I don't know if I'm alone in this but I find it extremely difficult to start doing intensive research without getting all, emotional...even two years and more surgeries then I can count later, I just have to stay on the very surface of her issues when they arise, in order to be strong for her. I knew before I was even old enough to have a baby that I would be over protective, so to be given Madison and have to stand by while she goes through, well I can't even get into that...I have a point here I promise. *ahem* I don't know what my heart is going to do the first time Madi looks up at me and asks why she is in a wheelchair and can't *insert something here* I guess it's selfish but in order to shield any negative emotions from her, especially in the face of a dozen specialists with bad news, I stay pretty ignorant. I can tell you what she has, and what's been done, don't ask me where her lesion is, or what those belly button cath sites are she may need, I can only handle so much, as pathetic as that sounds. *picks up spoon and starts feeding Madison* Everyone tells me that God only gives parents that can handle it special children, so there's hope for us yet and reading the things that only you SB adults can teach helps, I have to start taking the steps now in getting Madison and myself, prepared for the roads to come.

misty

06-04-2010, 03:06 PM

You have to let her be more independent. You can't feed her for the rest of her life. When she's hungry and you don't do it for her she will figure it out. She can do it. Her legs are paralyzed, not her arms.

One of the things I am most grateful to my mother for is the fact that she used to make me walk everywhere. Did I get tired? Yep. Did I cry? Yep. Did it hurt her to see me like that? Yep. But it was good for me. I can walk anywhere I want to go. Do I get tired? Yep. But I can do it because she made me do it for myself!

You have to make her do everything she can for herself. It's the best for her.

misty

06-04-2010, 03:18 PM

Also, she needs to know the medical terms and symptoms, what to look out for, in order to take care of herself when she grows up. In order to make her successful at life you have to make yourself knowledgeable and teach her what she's dealing with.

Jilleyann

06-04-2010, 10:02 PM

Thanks for your reply =P You are right, I'm only holding her back in doing things for her, she won't learn that way. I'm pretty sure all the Dr.s had me convinced for awhile that there was so much she couldn't or wouldn't do that I just included every challenge in that, wrongly of course, but we're working on pushing her..well I'll keep praying ^.^ Madi is only 2, I don't know how I'll even begin to tell her that she's different or how, I imagine sitting her down as if I was giving the birds and the bees speech and cringe. Hopefully in a few years I'll have learned a lot more from the people here and can confidently tell her what she needs and wants to know, I guess for practice I can start reading all those sb books I bought and couldn't make it through a chapter of <.<

If Madi is anything like some posters here she will probably have no problem keeping me in check and won't be bothered by things I'm putting too much emotion into, also maybe your mom can give me some pointers, to be strong enough to see Madi struggling and not swoop in to save her, I'll pray for that day!

misty

06-04-2010, 10:24 PM

Ha! I'm not sure my mom would point you in the same direction as she took me! Now that I'm older she tells me I'm stubborn as heck and it drives her nuts! She doesn't like that I won't get a chair for long distances, but she made me that way! She pushed me way past what I thought I was capable of and now I do the same to myself. I think she thinks she made mistakes. I disagree. I am definitely stubborn and tough, but I needed that to make myself as capable as I am. I was always expected to do the same things as my older brother (with the exception of sports, but I was told that since I had joined band in elementary school, I WAS GOING to be in marching band). I love her for that. It made me realize that while there are things I will never be able to do...climb Mount Everest, play professional football, haha...there's not much in regular life that I can't adapt to doing my own way!

angel

06-04-2010, 11:29 PM

Misty is right, when you swoop in you aren't saving her. I know as a mom you have that drive to protect. I get that completly. She will allow you to do for her as long as you will do for her. She is going to have to struggle and she is going to have to go through a lot of trial and error in order to become the independent child you want her to be.
As far as her being different she really isn't. I mean the way I see it is my legs don't work, and there are a few other things i have to do differently as far as maintnance. Those are the only differences in me and that doesn't make me a different kind of person, doesn't make me special, just makes me a person who's legs don't work and has to do different things for maintnance purposes.
What she starts to learn NOW will be easy for her when she gets older. I encourage you, for the sake of your child, don't put it off. Don't think i will do this later when it is easier for her. It won't get easier with age she should learn all she can at the appropriate age.
It is so obvious your heart is in the right place and i get the feeling you are still a bit overwhelmed about all of this. I would also encourage you to educate yourself about her condition in every way you can. It is the only way you will be able to make informed decisions for her good and to teach her how to make informed decisions when she is old enough to do so. Those things will be much much better for her as a person than the other stuff.

Angel

sean

06-05-2010, 12:12 AM

Jillyanne... your obviously a wonderful mother already.
Something to keep in mind, your daughter is in her normal, she/we know no different, until it's made obvious to us. Just guessing but it's probably always going to be harder for you than her. The goal is for you to handle it as informed and confident and accepting as you can. Your child is inately informed and accepting of her SB, she needs your confidence.

LisaJoy

06-05-2010, 02:00 AM

I just want to add that you don't have to try to wrap your mind around everything at once. For example, your daughter is two. You really don't need to worry about the birds & the bees talk right now. Just file that one away for 5 or 6 years and then revisit the question. I'm sure there are other things like that.

angel

06-05-2010, 04:09 AM

Just guessing but it's probably always going to be harder for you than her.

Sean you hit the nail right on the head there!!!!!!! Coming from someone who has been on both sides of the SB fence the parents suffer a lot more than the kids! Having it myself is a BREEZE compaired to watching my son go through some similar things i did as a child!

Angel

NerdaliciouS

06-05-2010, 04:12 AM

You know what's weird? I was never educated about my SB. I got told some story about a sack being on my back when I was born, my left side's weaker, if I had to pee, I HAD to pee, no touching latex gloves, and to be careful with my back. That's about it, lol. And for me? I don't have that much wrong with me as far as the SB goes, but it never bothered me because I 'wasn't different'. I only found out my lesion level by reading a doctors report one day, lol. Lame, huh?

Over the years, though... I became more curious. As the pain grew, curiosity grew. And so now I know a fair deal about what goes on with me from the medical standpoint, and from my standpoint (aka, I'm not going crazy when something hurts, lol). And yep! But I definitely agree... Way better to educate them younger. It makes things easier, you don't have to seek a bunch of information (although, you could!). But it's a very smart idea! Especially if one deals with more than I do!!!

Edit: I don't think any of us realize what it's like till we have a kid... Scary stuff. I think I'd probably have a heart attack if I had one and they did anything I did... You guys are brave! D=

Jilleyann

06-06-2010, 10:35 PM

I appreciate so much how encouraging and uplifting you all are, thank you for such positive encouragement! I will carry this advice with me, I know Madi is gonna teach me a lot about strength and I'll be honest with her about her condition without making it as doomsday as the doctors tend to. As far as still being overwhelmed that probably has a lot to do with the problems I face, I guess after 2 years I should be farther along in the healing phase, I see other mothers who don't seem to be discouraged at all, but I'm still very heartbroken about my babies diagnoses...so along with reading those books I could probably benefit from counseling. Although I loathe whining or complaining, or seeming weak my lord if only these posts had a timer, it takes me near to an hour to write any response I spend so much time making sure I don't come off one way or another, editing myself, so I'm really thankful to come back and read positive feedback ^.^

sean

06-07-2010, 02:25 AM

Jilleyann, no children myself, all I've got is having been a child with SB, and having a mother.
I've come out with the most stupid things here, and deepest feelings, and biggest secrets. We have superior moderators to protect us (no pressure lol).
This is a great place to share, let go.
Anything SB is encouraged, we need it.
Can't help but think (from a distance) that your in the thick of it, now, (can't see the wood for the trees). Your awareness says it all, you are doing fantastic.
Please allow yourself to whine and complain until you can no more.
Counselling, friend, other mothers, disability groups, talk to your dog, 'talk to us'
I feel you really need some YOU time....AAAAHHhhhh::dance2:

Jilleyann

06-10-2010, 07:23 PM

Your response means the world to me Sean, my dog is a pretty good listener, bad breath or not =P

I have been spending more time here and that's definitely good me time, I'm so glad Madison still naps!

I posted elsewhere about the roller coaster of parenting my sb baby, (toddler or not, she's always gonna be my BABY) sometimes I feel pretty confident in myself, I organize her notebook that has every specialist, tests, surgery, doctors visit, pt/ot/speech...and then sometimes I wonder what it is God saw in me in the first place to think I can do anything good for Madi or how many complexes I'm going to give her by teen-hood lol oh mylanta! I am very fortunate to have my parents (and their new spouses) as 4 strong and supportive grandparents to Madi, who lead by example and never get frustrated with me and everyone here that has listened and never had a negative response, it warms my heart ^.^

I think the 13 posts in almost 2 years sums up how open I am, but I'm getting better, so your in for it now..hehe

thanks <3

sean

06-11-2010, 11:21 PM

Is spending time here really you time?

Mustang Sal

06-12-2010, 12:44 AM

I agree with everything that's been said here. Nice thread Ali :)

Jilleyann, i'm so glad you're getting so much out of this forum. Please don't beat yourself up, you've had a lot to take on board in a relatively short space of time. Your little girl will grow to be who she's going to be, just like any other child :)

My own mother never made a fuss about my condition, or treated me any different to my sisters. Sure, I had things that set me apart from them, but you'd never have known from my behaviour - it was my 'normal', and my mum refused to baby me or pander to me. She's a fiercely independant woman, and she raised her girls to be the same, which i'm so grateful for. Slightly different thing, but I remember when I was recovering from my last surgery (when I was 17), after the initial post-op period, she'd make me do something more for myself every day - simple stuff like getting me to go and get my toothbrush myself rather than rely on her to bring it to me. She focused on what I could do, rather than what I couldn't, and i'm so glad. Of course, I didn't always see things that way, espcially the day I got home from school and discovered that dad had put my bed back upstairs again - I felt like it was too soon, and I was really upset, but it was the best thing they did, because I was getting lazy and it was probably hindering rather than helping me. I could have really got used to having her run about after me - I sort of slipped into 'helpless child' mode, so I can see how this happens.

Anyway, sorry for the long ramble - just thought i'd offer another perspective to the mix :)

Jilleyann

06-18-2010, 04:37 AM

Ack, sorry its been so long, Madison has been dealing with some insane congestion that has sent us to the ER because she can't breath twice 0.O
She gets very phlegmy and it seems she cant cough it up or swallow it, the last time she coughed up a lot of mucus and she was clawing at her mouth trying to get it out because it was blocking her airway, after that she could barely breath enough to cry and was wheezing, ugh The doctors ruled out a number of things and I've determined it has something to do with allergies/the fact that unlike other toddlers she has her face inches from the floor all the time. Since she doesn't walk and isn't weight baring in her legs, she mostly soldier crawls, ALSO since she is so wobbly when sitting up and uses a hand to support her still, if she needs or wants both of her hands she will play on her belly or side, and no matter how much I vacuum the floor is just where all the pet hair, dander, dust, etc. hangs out for her to breath in. She has gotten better since I have been putting sheets down on the carpet and were going to get a swallow study and allergy type test done, exciting...

Add the fact that she is going to be starting school this fall and Ive been going to orientations, eligibility meetings and IEP meetings and theres time for nothing else, so to answer you Sean lol me time, I wish! I've given up on most things I used to spend my free time doing, I have a stack of books and paperwork to my left I have to take to bed to do something with, but on the upside the money I dont spend on books, video games and going to movies is pretty nice ^.^

I'm sure I'll be told somehow for the greater good I have to schedule in me time, and all I can say is, how about a rain check? =P

And thanks for the post Sal, I definitely cant wait to see who Madison grows up to be, your mom had the right idea for sure, I have to read stories like yours so that I can keep in mind that doing for Madi won't help as much as making her do for herself! ^.^

bcain

06-18-2010, 06:35 AM

It's a "potty time" story. I talk about Cathy and Emmy our potty tools! Talk about how we use tools to keep our teeth and hair neat and clean, then talk about how Cathy keeps her dry and how pretty pee is clear, and cloudy pee means drink more! Emmy keeps her clean all day. I have pictures of her supplies for each procedure on the page, she can point to them when asked to show me the lubricant, the bottle to measure, the wipes, ect. I start the story telling her she needs tools to use the potty because she has SB. I have a picture of her operative site. I defined Spina = spine, Bifida=open. under that picture. I also say she has a scar from the surgery. That her SB will never go away, and no one can catch it. I took pictures of everything we use, and she's in most of the pictures too. Sarah loves that. Right now it's a paper book just stapled together. But I've uploaded it to a website to make your own book and soon I'll order the real thing. It's her very own story.

You will be suprised how much they really understand at 2. Sarah checks my back and her sister's back asking where is your scarr? I just tell her we don't have one, because we don't have SB. One day she'll really understand all this and it'll be matter of fact for her. I try to make it as fun as possible as that is the best way to learn it. Enjoy her strengths, you'll feel better too!