Last post Thu, Feb 21 2008 11:01 AM by KateCW. 26 replies.
Hi there, I'm a 43 year old mother with mobility issues and it's no joke looking after my active three year old son!
I walk around the house and climb stairs slowly, use a cane outside and a mobility scooter for zoos, malls, etc.
I have compensated for my lack of speed and ability to chase my son by using a backpack with a leash, keeping him on my lap on my scooter, etc. however, there are many challenges.
I have found most mother's groups to be quite accomodating. The worst for me is playgrounds and uneven ground, unfenced areas,etc. I have found one wonderful fenced, wheelchair accessible playground in my city (Calgary, Alberta, Canada) and have contacted the city Parks dept. to put together a list of other accessible playgrounds in our city. They tell me that with school playgrounds, etc. there are over 100, but I have no idea where they are. I have had to persist a bit, but they are slowly getting the list together. The man I spoke to also said that by 2011 all playgrounds must be accessible? I'm not sure if this is just in Calgay, or Canada, just in school grounds or what, exactly.
I would enourage all of you to ask your local govt. if such playgrounds exist, and ask for a list to be made public online, etc.
Any other tips/hints for parenting active children when not so active yourself? Any other Canadians around?
Looking forward to getting to know some of you.
Hi Kate, glad you found Disaboom!
When you get a more or less completed list of the playgrounds and locations would mind posting it here somewhere so others who may need the same thing have access to it too? We're hoping to get some parenting stuff up soon...
I don't know about other cities, but I do know that here in Salt Lake City, UT the Rotary built a totally accessible playground in 2002 when we were hosting the Paralympic Games. Its a great park, with ramps and access everywhere, even has accessible water features. The playground is located in Liberty Park at 900 S 700 E in Salt Lake City, UT and its terrific!
I don't know where to go for a list of actual accessible playgrounds, but here are 2 links that have information on US laws (sorry, don't have info on Canada) and guidelines for accessibility in playgrounds:
http://www.nrpa.org/content/default.aspx?documentId=5131
http://www.access-board.gov/play/
With a little more digging you can probably come up with tons of valuable info, which I know members would love if you posted on a blog or something, I sure would.
I don't have kids yet, but hopefully will someday and would love to know accessible playgrounds where I can take them to play.
thanks,
Muffy
Hi Kate, Muffy,Tim et all,
Parenting with a disability. Now there's a topic. Linda and I did a lot of research (wasn't much available then) 20 or so years ago, on the subject. Then spent at least 18 years raising our two offspring. Sounds like a good blog or article topic, and absolutely a forum heading ( are you listening Michael?)
The physical considerations and psychological are many. From breastfeeding and bonding to discipline and self image (parent and child). all the usual challenges and joys of child rearing co-mingled with the challenges and joys of being a disabled parent.
Interestingly, I did a paper for my ASL 1 class called Hearing Child/Deaf Mother, have to see if I can dig it up.
My user name is BurnThisCube (I have anxiety disorder/social phobia). My wife's username is Serendipity (she has severe CP, uses a motorized chair). We are not professionals, however if anyone has any parenting issues, and needs some quick, "emergency" advice, before everything gets squared away on Disaboom; I think I can speak for my wife in saying you are welcome to post either of us, anytime. We know what it's like.
Bruce
http://community.disaboom.com/tags/DISALIFE
Thanks for the responses. My most burning question is...at what magic age do your children quit running away from you?? I"m only half joking, my son is a "runner" who is not afraid to leave my side and frequently runs off in the Science Centre, etc. Others tell me "he just does that because he knows you can't chase him". I think that is partly true, because he doesn't have the immediate consequence of having me catch him and remove him, but also I think he's just an energetic little boy. My nephew was exactly like that and at that time both my sister and I were perfectly capable of running after him and did.
At three and a half I really don't think he fully appreciates the consequences of running away, i.e. car accidents, abduction, falling off the dock into the water, etc. and I know its my job to keep him safe until such time that he does. Part of this is just a parenting/child behaviour thing, not a "disabled" thing, but I am blessed with this little fireball and need to keep him safe. He still urges me to "run, Mommy" during games, etc. so I think at this magical time he sees no difference between me and anybody else, other than the cane I use and the neat scooter he gets to ride on with me at times.
I have been able to hire a teenager during summer to come with us to some riskier outdoor activities (waterparks and the zoo) and sometimes just to run around with him in the backyard in an energetic fashion. We have a fenced backyard and a great playstructure.
An advantage to having my son only know me with mobility issues is that I hope my conditon doesn't frighten or distress him. I think of a high school friend who has recently started to use a cane due to her M.S. She said her 10 and 11 year old children "freak out" and don't want her to use it. I think it frightens them. I have been sad at times that my mobility started to decline right after I had my son (I have partial transverse myelitis my neurologist tells me) but I think it is a bit of an advantage in terms of him knowing me as his caregiver and protector, despite my disability. He hands me my cane and doesn't seem fazed by it. I know at some point he'll realize I'm different, but even the hippest, fittest parents seem to be a source of embarrassment for their children at some point!
I have found an excellent and accomodating preschool here in Calgary, Alberta, Canada. I visited three and this lady in particular was so helpful by providing a magnetic handicapped parking sticker to put on her garage so that I could come right up to the door instead of parking on the streets, has encouraged me to volunteer and provided seating for me to take my shoes off, in the classroom, etc. and has also encouraged me to meet the classroom at any field trips using my mobility scooter. What a great experience for the start of my son's school years! I am sure to sing her praises to others, as I think good behaviour should be rewarded.
I am still waiting for a response to my message to the City of Calgary Parks Dept. regarding the list of wheelchair accessible playgrounds. I know the city has them, and this fellow I spoke to was enthusiastic about access, I think it's just a matter of keeping them on task and gathering all the information. I first called in June and they told me it would be a month to put together this list. Well here it is at the end of summer and no list. It will come, I just need to keep asking-the squeaky wheel gets the grease, as they say.
Well, a certain person needs his before bed bath, and as I am still living in a two storey house it's time to start my slow journey up the stairs. Good chatting with all of you.
Linda and I put our heads together (ouch!) and decided the magical age is between 4 and 5, based on our kids and grandchild. At the time I was opposed to the use of a harness and was almost always present (I took 5 or 6 years off working to help raise our children). Until they had passed the bolting stage, we avoided the riskier locations, untill they were a little older. I can understand not wanting to limit yourselves, so were I in your situation (my disability is psychological/emotional), in these riskier locations I would use a harness.
People say "...he knows you can't chase him". I think that is partly true, because he doesn't have the immediate consequence of having me catch him and remove him". Our children knew I could catch them (and quite possibly their mom, a 500 lb motorized chair + a mother bear = a bulldozer) and that never stopped them. You are right that immediate consequence is ideal, but nothing in life is perfect and as long as there is a consequence, you have done well.
Frankly I'm impressed with your clear perceptions about your son's attitude/understanding of your disability. Your son is lucky and you will benefit from your wisdom."...an advantage in terms of him knowing me as his caregiver and protector, despite my disability. He hands me my cane and doesn't seem fazed by it. I know at some point he'll realize I'm different, but even the hippest, fittest parents seem to be a source of embarrassment for their children at some point! " You can say that again.
"Well it's been thirty years in these two joined lives. In the 80's we were still disabled, but had two wonderful children. In the 90's we may have been differently-abled or some other political correctness but our son and daughter grew toward adulthood. They know we're disabled, in the future they may be disabled. In the 2000's you can just call us Nanny and PaPa. The future is yet to be". Quote from DISALIFE: DisALife.
My kids realized I was different when we I walked them to their bus stop. Kids were asking why can't your mom walk. My daughter answered ,because she was born that way; the end.. The kids got to know me and they came over inquizitively. I explained how pointing my joystick in the place I want to go, it goes there. At age 4 my son disappeared, no where I could see. I went behind a wide tree and stayed there until he was looking for me. I was and he was in a safe place with parents around talking. So, it was my time to hide. Corey was looking and getting scared. Looking and looking; It took time to grasp how mommy can disappear. When I came from behind the tree, he asked why was I hiding. Corey, Mommy moves around and thats why YOU MUST watch how far you're away. There are people who might take you away from mommy. From then on he played and peeked at where I awaited.
I'd say by the age of four you can teach him not to run. Try to place yourself when your with someone who can sit and watch your son as you slip some place where you can see him BUT he can't see you. After a few minutes ask the person thats with him; ';wheres your mommy? I never said I was hiding but rather looking at something I quickly said it must have scared you not to see mommy. Were you scared. You know will always protect you.
I even escaped around the corner of the yard. My 3 year old grandaughter catches me walking away and she chases me. Calling, '' Nanny, Nanny where are you going? Come back,Come back and chase me. I chase her all over our yard. My disability, well nanny needs help like sometimes we all need help,righttt???? My daughter told her that one; I remembered I told both my kids about needing help. My daughter as a teenager, she had to do it her way. I know teenagers are all about knowing it all, and doing it their way. She was trying to move apart from me. Doesn't this remind you of a 3 year old stage. He can run away but knowing mom will catch him/her! At 5 years, I stopped calling for them to follow me. Now I said is your responsibility to listen carefully to when my chair moves.
As a mother herself, recently my daughter confessed, I know you tried your hardest to direct me in a safe and successful way, I was stupid for not listening. To ME you were a good mom, mom.. My eyes starting to water up.
My question is what was your friend's perceptions,thoughts about her cane? Teens are very selfish and self-centered. But they will come back accepting your friend's cane, when they are ready.
I wanted to see how my daughter was doing in school, this place she spent six hours and five days a week. The principal got me very well. And didn't mind me waiting for when they come out in the hall. Her teacher gave her permission to go to me And well, with everyone looking she jumped on my lap to hug me and said, I love you mommy, giving me a kiss. All of the class sighed an ''arrrrrrrrrrrr''. When I saw my son he hugged me and hugged me and kissed me. Their teacher got it.. showing up in school, showed me I was interested 'abled to visit their school and their learning..
Thanks for all the replies and encouragement. So nice to connect with other parents. I think my son is actually getting better at listening, and I think preschool is helping.
I haven't been posting much as we have been busy with the first few days of preschool and we are finally going to build a bungalow, yippee! We've been busy with that too. We are in a two storey house with laundry in the basement, not good. In the new house we are building we will be dropping down part of the kitchen countertop, bathroom vanity, etc. so I can sit and do make-up, chop veggies,etc. It's a year away, and I"m so looking forward to it.
I really can't say enough about how helpful my son's preschool has been. they constantly reassure me that they'll make sure I can participate, putting up handrails for met, etc. What a pleasure.
Better go.
Hi,
My partner and I are both disabled. He is a C6 quad via SCI and I am deafblind, tho do have some usable vision and hearing. Keeping track of kids is one of our tough issues. We have 2 year old twin boys. So we are in the thick of it right now.
Sometimes we compliment each other. He can see them and I can get to them. Sometimes we don't. We have tried lots of different strategies. I depend on my stroller quite a lot, but I know that can't last forever. I have thought about using a harness and may still in the future.
You know what I have never understood about playgrounds? Why can't they fence them in? Why are they always out in the open? Would it be so hard? And although that would not solve all of our problems, wouldn't that solve about half or more? And it would help everyone.
I have heard of some accessible playgrounds, there is one at the perkins school for the blind that is quite nice. But I have not seen one in person. I think they are rare, but maybe they will become more common in the future.
I know some people disagree with the harness but to me when you're with your child alone, they are almost a necessity. My daughter will be 3 in March and sounds a lot like your son - very spirited and energetic. Though I don't use it all the time, we do have a harness for her when we are in very busy places like malls or when we're in a place near a street or lots of cars. My situation's a little different in that I use a manual chair to get around so catching up to her about 50% of the time when she runs away from me is a little easier for me. She knows but forgets sometimes her consquences of doing such a thing. I use immediate time-outs when I catch her (even if she has to sit against the wall in a store for 2 minutes) and swat on the bum if she's done something dangerous like run out into the parking lot or road.
Now that I have my 4 month old son we've had to change our strategy a bit. I don't go out as often with her as I used to because having my son and the toddler at the same time is too much sometimes. We also have just moved into a new house without a fenced yard (hopefully that will be remedied this spring) so she doesn't get to play outside very much. I don't think I'm damaging her by not letting her outside as much as she'd like because its only temporary. I do feel confident that if you do have a backyard that is fenced that your son would not be 100% safe, but safe enough to be able to play back there without you being right there also. That's just my opinion, and you always need to do what's best for your own child.
I guess I got my philosphy from my parents who were major advocates for me being as independent as I could be considering my circumstances I really don't want to keep her under lock and key for very much longer. I want to let her play on playgrounds and do things that make me bite my lip and resist the urge to wheel up and take her down from places. I have know she's going to get hurt sometimes and as long as I don't advertently put her in harms way, its part of growing up.
And as for your child being worried or freaked out by you, you're less likely to have that happen. In your friend's situation, it was something that was suddenly a reality for those children - thus it freaked them out. In your situation, I'm assuming, you're child has never known anything different (ie you being disabled). When he reaches the magic age of realization, his questions will only be out of curiousity not embarressment. I go off of my experience with my younger siblings who did the same thing -they saw Whitney in a chair which was a non-issue for them until they realized not everyone's family had someone in a chair, and then became my greatest advocates as they got older. I think we'll find the same for our children. I'm sure they are out there - children that are ashamed of their parent's disability. But I'll bet you anything you'll find more that are very proud of their parents and love them very much.
I'm disable too and have an almost 4yr kid, and I agree that sometimes it can be so hard to deal with her energy and can be really frustrating.
Being a mom is such a great experience and being a disable mom is a challenge also, it stress me out when I think about our future because my legs have been slowly loosing strenght and she needs lots of energy from me.
But I like to remember that God never give you more than you can handle.
God Bless,
Claudia
Hi everyone,
I'm glad to hear you have all coped with parenting with a disability. My question is how did you do it when your children were babies? I'm 31 year old women who would like to have a bab, but i'm nervous about not being able to do things for the baby - hold them in my arms, burp them, change diapers, carry the car seat, etc.
Any suggestions or websites that would be helpful for me? your help is appreciated!
-Catalina
I think most of those issues depend on your level of disability. If you're like me where most of my paralysis is in the lower half of my body, I have tons of suggestions. But if you have paralysis in your upper body as well, I'm sure we can figure some things out.
Just as resource I haven't had the chance to mention, there is a group in California called Through the Looking Glass which is dedicated to parenting with disabilities or parent a child with disabilities. Fabulous group! They have a gal there named Judy Rodgers who wrote a book called The Disabled Women's Guide to Pregnancy that I think you shoud read (nudge nudge to Kara! she has examples of some gals with OI that have had babies) before you get pregnant. She tried very hard to make the book cover as many disabilities as possible and address as many pregnancy senarios as she could. I found it very useful when I was trying to attempt a VBAC (vaginal birth after cesarian), but as it turns out, I have a boy shaped pelvis and all the pushing in the world would have come out to nothing.
If you can give me a general idea of what your level of ability is, then I can make some suggestions I that I hope you will find helpful.
Thanks for your reply. 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'll check that book out, thank you for the suggestion.
Anything else you think of, please let me know!
Thanks,
Catalina
