Last post Thu, Feb 21 2008 11:01 AM by KateCW. 26 replies.
scrappywheels:(nudge nudge to Kara! she has examples of some gals with OI that have had babies) before you get pregnant.
LOL! I was just catching up on some posts and got my nudge-thanks Whitney! What a great thread this is-super interesting and I've learned alot:-) Yeah I'm totally trying to get my friend (who also has OI) on here to talk about her brand new baby girl (and the rest of her life!)...I've been trying to get her to join since about a week before she had her baby---good timing right! And Jasmyn is just 3 weeks old (she still wasn't to be born for another 3 weeks though) SO give her some time to settle down though and I'm sure she'll be on too...her challenges are intereting because she's only 3'2'' tall and uses a motorized chair, has to be a little more careful (not to break bones), and has limited strength....We talk on the phone at least a couple times a day so together we've figured out a few things.....
One thing is that certain devices definitely make it easier--the downside is that some of this equipment is more expensive or adds up...We were talking the other day about how it's difficult to rock a baby if you can't stand up (or if you have a really short torso like us) and we found this
It's pretty pricey but awesome-check out the features if you have a second. There's a short video here on the link:
http://www.toysrus.com/product/index.jsp?productId=2878552
And for harnesses, I think they totally make sense for safety. I think ADULTS get out of whack about them because THEY compare them to leashes or something--but really it's just simulating the exact thing that walkers can more easily do (aka chase and retrieve)...I mean it's not as if walker's children have a 50 radius to wander the plains! So same goal (safety) just different method.
candc1221: I had a stroke 2 years ago and am paralyzed on my left side. I can walk around (not run) but can not use my left hand or arm.
I had a stroke 2 years ago and am paralyzed on my left side. I can walk around (not run) but can not use my left hand or arm.
That will present an interesting challenge but I'll bet its probably no different than a gal who's an amputee or born without an arm on that side. I would imagine that you are starting be fairly adept at using your one side. So you just need to think of ways to carry baby around and practice doing things like changing diapers (changing disposable diapers one-handed is pretty easy) and dressing with just one hand.
First suggestion I would make is make sure everything you buy to take care of baby (ie crib, changing table, swing, high chair) is going to need to be high enough to keep your center of balance at waist or higher. I would imagine the safest way to carry baby is cradled in your good arm, and that can easily be achieved with a little practice - bending over and slipping your arm under baby before picking him/her up.
Second, a couple of baby items I think you'll really find useful is the Diaper Champ. It's a diaper pail where you stick the dirty diaper in the diaper hold and then flip the lid and diaper is taken care of. Designed to be used one handed, it also has the added benefit of using just regular garbage bags as liners instead of the pricey specialty ones, like the Diaper Genie. I would also highly recommend for those first few weeks after baby is born to buy gowns instead of traditional onsies. The gown's bottoms are open making it easy to access messy dipes. I am also a huge fan of a wrap called the Moby Wrap, but that particular item might be a little challenging to use one handed. If that doesn't work or if you prefer to try things you can use on your own, I would try a traditional sling carrier. Than can be easily slipped over your head. I've never been a big fan of the sling - only because I'm in a chair and they do better when you're standing up. So it might be a perfect solution for you.
I hope this helps a bit.
KaraSwims:It's pretty pricey but awesome-check out the features if you have a second. There's a short video here on the link:
My only concern with this particular model, and there's lots of this type out there, is that support base looks fairly wide. I would be afraid that your caster wheels would run up against it and then you would have to bend over too far to put baby in it. I like the height on it though.
Check this one out -
I found this one for about $100. Not exactly cheap but what in our disabled lives has ever been cheap? This one I like because you can put the baby in from the front and I don't know about you but I have better balance when I can lean on my thighs than when I have to bend to the side. It also has the added benefit of swinging either side to side or back and forth. Both my babies HATED swinging back and forth, it made them feel unstable but I'll bet if I could have afforded something like this, they would have loved the side to side motion.
I just wanted to make a general comment to you gals who are considering becoming mothers (and even to the guys who want to become fathers). There is nothing so wonderful in this world like carrying a baby inside you and then giving birth, whether it be vaginally or csection. The joy is overwhelming in the extreme. That said (and I say this next part not to discourage but to make aware), there is nothing in this world that makes you more aware of how disabled you are than having a child. I think this was the part I was not prepared for. I have always been extremely independent. I come from a family of 8, not including my parents, and I have much older siblings who when I was growing up were having babies, so being around a baby was not a big deal. But my children are my biggest joy and biggest challenge. What I have found though is like anything in our lives, we have to be patient and take the time to figure out what works best for us. We'll make mistakes but as long as it doesn't harm the child, its ok. Our babies will never know the difference! Just like average people, we are just learning. I'm still learning. I'm learning right now how to balance dealing with a tantrum-prone 2 1/2 year old while my 4 month old is screaming his head off in the background because I had to leave him in his bassinette because it's the safest place for him to be while I'm dealing with her.
Well, that's all I have to say about that.
Can I just say you all are so awesome and this is just why I am so excited about Disaboom! My husband and I have been "trying" to start a family for the past year and I have to admit, I have been quite concerned on how I am going to care for an infant with my disability. I know I can do it, but there is nothing like connecting and learning from others who have done it! Why reinvent the wheel?
So, many, many thanks to you all for all the info and advice. hopefully, soon I'll be "prego" and really desperate for advice!
Muffy :)
I just wanted to commend you all as a single
dad of three boys I know it can be a challenge.
Keep up the good work.
Kate,
You are not alone and inaccessible playgrounds are a problem here in the U.S. too.
I am a 31 year old single mom of a very active 2 year old boy. I am a chair user and have also struggled with ways to give my son plenty of room to run yet keep him safe. One of the places thats worked for us is bike paths. They are ususally paved, kind of flat and even if he gets a little ahead of me I cabn usually still see him. I often feel like I'm cheating him when I drive past a playground but I work on creative ways to stay active that are accessible for both of us.
Thanks for your comment.
i have polio and a 4/12 almost 5 year old .. when i was single this was about the biggest fear of my disability and being a parent .. when i got married i told my husband that he'd have to stay home and be full time daddy or he'd have to get a kick A job so i could stay home and he'd hire help .. b/c i knew my strenghths/weaknesses and knew i couldn't physically care for a lil one all day long
ok brace yourselves!!
people may agree or disagree ..
but ..
our prescious STOPPED running off on us at about age 3 .. it was a little work but not that hard ..
to get her there had little to do w/ training on NOT running off ... and A LOT to do with just plain obedience ..
when she was 18 months old and just BARELY starting her "tantrum phase" .. she and i were battling over someting i have NO CLUE at this time ..
but i physically struggeled with her for a while ... then eventually i decided it was time ..
time to bring out the paddle. .. we had a WHOLE method though .. it wasn't just wham a paddle on the bottom ...
it was .. takeing her to ONE spot .. seeing at the time our bathrooms were not big enough for my chair it was our bedroom ..
then talking to her first explaining why she will be getting the paddle ..
then taking the wooden spoon on her bare bottom ..
then pulling her pants up looking her in the eye and talking to her again about the paddle ..
then telling her she needs to apologize and walk her through the apology
then telling her i love her and it was MY (or my husband .. depending on who's doing the disciplining) responsibility NOT THE CHILD'S to "make it right" BEFORE we left the room .. it was OUR responsibility to make sure our daughter was not crying and feeling good about our relationship before we left the room ..
i really struggled with it the first time ..
i KNEW how to do it correctly b/c i had seen a family who i learned a lot from doing the whole entire method ..
but i STRUGGLED with .. was is THIS the appropriate time? .. i called the family and asked for advise .. and we talked about it ..
the family said maybe @ 18mo she may or may not be ready for it ..
we used the paddle just a few more times and then stopped ... i thought perhaps she wasn't ready .. maybe she didn't quite get it ..
then we started again after she became 2 ..
i knew she was ready @ 2 ..
after a few times .. she TRULY didn't need the paddle much more .. then eventually we were able to MOVE to a "corner" discipline .. sitting in the corner .. the only time the PADDLE came out was out right disobedience .. like a deliberate disobedience .. but still the same method ..
then eventually that stopped too .. we TRULY didn't have much issues w/ temper tantrum .. the 2's or the 3's that people talked about ... oh sure we had it but not like people talked about it ..
NOW REMMBER PEOPLES ... all the while .. we DIDN'T just use the paddle for negative behaviours ..
we had a ALOT of other things .. like we always praised her for when she DID listen to us .. or when she DID do as we asked .. and we made an enviornment that wasn't confusing .. like we didn't say AT THE TIME it was to go .. TIME TO LEAVE .. we'd have COUNTDOWNS ... when she was yhounger we'd have longer countdowns .. like 10 minutes before we leave , 5 minutes, 3, 2 ok we have to go ... or 10 minutes b4 we leave, 5 now please clean up, 3 etc ..
remember the paddle was ALWAYS on the bare bottom ... NEVER EVER EVER anywhere else .. EVER!!
AND it was NEVER done in anger!! EVER !! and it was NEVER done w/o explaining first than paddle than explain again and a make up ..
whether you're a paddler or not .. the SINGLE MOST important thing .. that even non disabled parents fail to do:
1. C-O-N-S-I-S-T-E-N-C-Y.............GOSH THAT'S key!!
2. actions = consequences .. my husband's niece / nephew is AWFUL!! .. they fight the parents when its time to go .. they don't listen in public .. they run away in public .. and these kids are in 1st and 3rd GRADE PEOPLES!!
3. YOUR'E RESPONSIBLE for their enviornment .. you need to make it EASY on the kiddos .. not harder .. don't yell .. give them reasonable ample time .. don't say TIME FOR BED and expect them to just GET IT .. give them TIME .. give them AMPLE time .. and don't just SAY IT .. don't just SAY 10 minutes then we leave .. BE ACTIVE during those 10 minutes .. don't go talking to another parent ... sure u cld talk but during so .. help your child to clean up (of course this depends on age and maturity ..) or go get their coats or MAKE SURE you are wrapping up your business ..
4. ALL THEY NEED IS LOVE .. LOVE ... love is all they need .. sure your'e like but DUGH all parents love their children .. but yeah are they HEARING IT .. are they FEELING IT? .. or do they ONLY get your attention when theyv'e done soemthing wrong? do you CATCH THEM doing something right? do you SING their praises? i'd used to tell .. actually still do .. my husband IN FRONT of my child .. all the right things she did .. if she didn't listen to me .. AND I ALREADY had it handled!! i'd tell him QUIETLY .. not so that she can hear .. so that she can feel bad again .. so that he can reprimand her!!
believe it or not .. my daughter always obeyed me WAY better than my husband ..
WHY? I was MORE consistent than he was!!
OH GOSH .. key ingredient i TOTALLY FORGOT ..
i am not and never have been strong enough to to pick my daughter up and put her on my lap for the paddle .. so DON'T FALL INTO THE TRAP!!
i never fell into the trap b/c we were VERY purposeful about this ..
if it was ME that daughter wasn't listening to .. husband HAD TO HELP me BUT IT WAS STILL ME ..
he'd put her on my lap so i could talk to her eye to eye .. explain what had went wrong ..then he'd pick her up again and laid her across my lap .. and if she was really fighting it .. he'd help me control her body but all the while she's on MY LAP .. and then IT WOULD BE ME that did the paddling .. then he'd help me pull her pants up and he'd help sit her on my lap and we could talk eye to eye .. and then I WOULD give her hugs and kisses and make things RIGHT between us ..
so the PADDLE .. wazs to establish who was in charge .. to establish obeying mommy and daddy ..
and honestly .. gosh .. that spilled out into SO MANY areas ..
like going out in public ..
one time we went to the mall .. and we were going to take her on a carousel ride, but she had run away and we STOPPED and said htat we weren't going to .. we turned around and went home ..
now we DIDN'T paddle for that b/c 1. we didn't have one on us in hte van .. and she was too little to go home and get one and know why she got one .. the distance was too far from the mall and home and we couldn't do it IMMEDIATELY .. BUT when we got to the van .. we TALKED about it ...
well it had been SEVERAL months b4 she run off on us again .. THIS TIME SHE DID get a paddle b/c we felt she was old enough ..
i wasn't going to tolerate her running off and i didn't want to get a harness .. the point is she was to just obey us ..
well also coupled with that .. was setting up a system ..
EYESIGHT was the system .. if i didn't have eyesight w/ her i'd say out loud .. eyesight .. and she was to IMMEDIATELY find my eyes .. if she didn't it was a discipline issue .. and if she didn't have my eyesight she was to scream eyesight ...
ALSO coupled with that was explaining about how some people want to take kids away from their mommies and daddies and how if that happened to her i'd NEVER see her again ..
also teaching her if s/o TRIED TO take her .. she's to DO EVERYTHING in her power to kick scream bite yell hit and tell people he's taking me etc ..
ALSO there was rules about SCREAMING ... you'll NEVER find my daughter in mcdonalds playland screaming scheeching screaming just b/c she 's playhing or on the playground .. not a SCREECHING screaming ..
i told her that screaming is reserved for the HEY HELP HE'S HURTING ME .. time ..
well i know this is long but i hope that it can make sense..
BOTTOM LINE IS .. CONSISTENCY AND LOVE ..
OH and SET the expectation .. before we left the van to go into the store .. we went over th ground rules ..
1.. no running away ..
2. no hiding in clothes
3. eyesight
4. if these things AREN'T followed the consequences ...
etc ..
hth
Dear Kate, I just read your post from 8/30/07 & I must tell u, it definitely cheered me up 2 read your middle paragraph about your son only knowing u 'this way'. My son will be 2 1/2 yrs. in May 08 My health had just started 2 really head downhill FAST right about the time I got preg. w/ him. I had my daughter when I was still young, healthy, and FULL of energy!![I was a mere 19!!] My daughter will be turning 21this March! It is sooooooo different!!! I can't do ANY of the things w/ him I could do w/her! It is frustating , & sometimes very depressing!! Wedo an awful lot of sit down arts & crafts; and alot of "'cars".LOL But I find myself thinking about his [our] future; and how limited [physically] it is going to be,makes me sad . Hope your house is coming along 4 ya. I have a similiar issue: 3 bedrooms UPSTAIRS!!!Our bd.rm. and the "nursery"-which I can no longer get to, I can [slowly & CAREFULLY], BUT..... the doctors r all tellin' me:NO!!!!! Take care, thanx 4 listenin', & God Bless. Pamm [misspamm67]
Hello all, it seems like a long time since I"ve been on here and I have enjoyed reading all the responses and realizing that I am not alone!
My son is now 4 and is listening better and really not running off, so things are improving. I am even finding that I can ask him to fetch me things from the other room and so forth, and he is becoming very helpful. We continue to do things with him following me or on my lap on my trusty red scooter, and generally life is good. We just came back from 2 weeks in Maui, where I can just struggle a bit onto a beach chair when walking through the sand, but the pool is so much better.
Just wanted to check in and say hello, and it is so good to hear from all of you.
Kate
