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Tracie,
They sound perfect...I'd like them, too.
Laurie
tracie said:Michelle, I can't take credit for this little note...someone years ago had it available online for free. It may have even been someone on the Parent Project website, but I think it might have been from www.wheelchairjunkie.com. If you like, I can e-mail it to you and you can print some out for yourself. I have them in a Word document, 3 to a page. Tracie
Michelle Scaglione said:Tracie
I love the wheelchair graphics you put on the cars. You should sell them. I know I would buy them.
Michelle
Tracie
My email is: michelle@scaglione1.com. Thanks.
Michelle
You raised some valid issues Cheryl, but I just wanted to add something (and I know we are going completely off topic, but hey thats the joy of discussion boards)
Yep the mums of the ambulant boys that don't have to deal with respirators and dressing and feeding have no idea how we feel. They don't know what its like to be so tired and frustrated at the whole situation that somedays you just don't know where to begin. But that is where we should be guiding them, helping them, mentoring them for the road ahead. Maybe if they have this support they will not burnout, as they will be prepared rather than shocked like we all were. Maybe we need to give more feedback on discussions that cover issues we no longer have to deal with, and give them the benefit of our experience - strive to make this a journey where they feel supported and encouraged by the many that have walked the path before them. Share our mistakes without feeling like the world will crucify us for them, so others don't have to learn that lesson the hard way too. And when they make comment on matters they don't even understand, rather than belittling them maybe we need to see it for what it is, a friend trying to offer help to someone in need. We don't always get it right, so it's unfair to expect them to.
As far as the parking bay issues go, even though these mums don't have EWC's and ramps/hoists, a lot of them are having to do manual transfers, and this also needs a wider bay, as you have to be able to get the car door open fully in order to do a correct lift (and not put your back out in the process). So they have perspectives on issues that we may have forgotton all about. I know it took this discussion to remind me of those horrible days when it was pouring with rain, and I had to first of all put the manual wheelchair together (whilst trying to hold an umbrella) and then get Mitchell out of the car, without the wheelchair seat getting too wet, and not poking him in the eye with the umbrella that was wedged precariously between us...... none of this can be done in a standard width parking bay, which is why I suspect some of the vehicles parked in van accessible spots are there.
Yes there will always be the inconsiderate people that think their needs are greater than anyone elses, we have huge issues here with non placard vehicles using disabled bays as "5 minute parking spots". For a long time it used to make my blood boil and I would find myself daydreaming about how great it would be to kick their headlights in, or let their tyres down so they could be as inconvenienced as I had been, but in the end I realised that the only person that was going to have their day ruined was me - they didn't care, that's why they parked there in the first place.
So now I just make the call and get them booked in the hopes they wont do it again. I used to also carry little cards that read: "I didn't know ignorance was now a recognised disability however please refrain from using the bays until your sticker (placard) arrives..." They probably screwed it up and threw it away, but it made me feel better that I had done something and shown them that not everyone is impressed with their selfish behaviour....
You raised some valid issues Cheryl, but I just wanted to add something (and I know we are going completely off topic, but hey thats the joy of discussion boards)
Yep the mums of the ambulant boys that don't have to deal with respirators and dressing and feeding have no idea how we feel. They don't know what its like to be so tired and frustrated at the whole situation that somedays you just don't know where to begin. But that is where we should be guiding them, helping them, mentoring them for the road ahead. Maybe if they have this support they will not burnout, as they will be prepared rather than shocked like we all were. Maybe we need to give more feedback on discussions that cover issues we no longer have to deal with, and give them the benefit of our experience - strive to make this a journey where they feel supported and encouraged by the many that have walked the path before them. Share our mistakes without feeling like the world will crucify us for them, so others don't have to learn that lesson the hard way too. And when they make comment on matters they don't even understand, rather than belittling them maybe we need to see it for what it is, a friend trying to offer help to someone in need. We don't always get it right, so it's unfair to expect them to.
As far as the parking bay issues go, even though these mums don't have EWC's and ramps/hoists, a lot of them are having to do manual transfers, and this also needs a wider bay, as you have to be able to get the car door open fully in order to do a correct lift (and not put your back out in the process). So they have perspectives on issues that we may have forgotton all about. I know it took this discussion to remind me of those horrible days when it was pouring with rain, and I had to first of all put the manual wheelchair together (whilst trying to hold an umbrella) and then get Mitchell out of the car, without the wheelchair seat getting too wet, and not poking him in the eye with the umbrella that was wedged precariously between us...... none of this can be done in a standard width parking bay, which is why I suspect some of the vehicles parked in van accessible spots are there.
Yes there will always be the inconsiderate people that think their needs are greater than anyone elses, we have huge issues here with non placard vehicles using disabled bays as "5 minute parking spots". For a long time it used to make my blood boil and I would find myself daydreaming about how great it would be to kick their headlights in, or let their tyres down so they could be as inconvenienced as I had been, but in the end I realised that the only person that was going to have their day ruined was me - they didn't care, that's why they parked there in the first place.
So now I just make the call and get them booked in the hopes they wont do it again. I used to also carry little cards that read: "I didn't know ignorance was now a recognised disability however please refrain from using the bays until your sticker (placard) arrives..." They probably screwed it up and threw it away, but it made me feel better that I had done something and shown them that not everyone is impressed with their selfish behaviour....
Wow...this post really took off! First and foremost...I started this post as a way to vent. I figured there were alot of parents out there frustrated about the whole thing as well. I honestly didn't think anyone would not feel the same or at least show their support as I have found so many of you do. I guess I was just taken for a loop when the first comment I got was not supportive.
As for my comment about new parents giving advice. Perhaps I should have been more specific. There was a post about prednisone and new parents were recommending it saying the benefits outway the side effects. I responded with some information that I had to find out through my best friend. My best friend's son, Treston, was on prednisone a year longer than my son, Avery, was (he's 10) and was taking a lower dosage than my son. Treston's leg was fractured during a simple transfer by his father. After doing a bone density scan, my best friend found out that Treston apparently had the bones of an old man. They warned my best friend that if not careful, he could fracture his spine. All due to prednisone. I did post in order to help those wondering if prednisone is for them. I understand, in the end, it's our choice as parents as to the specific care our boys will receive and I fully support that. That was my way of providing awareness. I also need to add that I really could have put my frustration in way that did come across as hostile. We are all together in this regardless.
As for my son, well he's home now. The surgery went well but his recovery was a nightmare but I'm glad that his pain is under control and he is in the comfort of our home (actually, the little stinker is smack in the middle of my bed with a million pillows) I guess what is going on with me is that I'm in the middle of the "Change". What's the change? Well, I call it The Change when you are no longer a new parent watching your boys having trouble walking but you're not at the end of the road just yet. For me The Change slaps you right in the face. One day everything is fine and the next he's in a wheelchair, then all of a sudden his dinner plate is too heavy for him to pick up, and I'm taken back to when he was 7 months old still trying to sit up all by himself...sitting but wobbling a bit..and I realize, he's not 7 months old...he's 10..and he's back to where he started...trying to sit up all by himself. I don't know...this last week we spent in the hospital really got to me. I realized that this was the first of many hospital stays to come. I found myself racing down the hallway...trying to hold back my tears, until I was safe in the hospital chapel and able to cry out to God asking for the strength I am going to need. I don't know...I'm just babbling now but I just want to say we are all a family...I am sorry that I have offended some people here...I just felt like I could vent and get support that I sometimes dont' seem to get
Michelle, I can't take credit for this little note...someone years ago had it available online for free. It may have even been someone on the Parent Project website, but I think it might have been from www.wheelchairjunkie.com. If you like, I can e-mail it to you and you can print some out for yourself. I have them in a Word document, 3 to a page. Tracie
Michelle Scaglione said:Tracie
I love the wheelchair graphics you put on the cars. You should sell them. I know I would buy them.
Michelle
It happens to us all the time and its very frustrating,last time I was at walmart there was no handicap spots open and then I come to a van acessible spot and there is this little car parked there so I pulled in on an angle and parked in the same spot guess I could have gotten a ticket or something but I didn't luckily. So I guess there is no good solution but I don't think cars should park in a van spot.
It happened to us this morning when I took Christopher to college... There was a small car parked in the handicapped space, then a mini-van in front of me, with no placard pulled into the hash-marked area next to the handicapped spot..she let her able-bodied son out and in the meantime, the small car began to back out of the handicapped spot. I went up to her car and mentioned that the hash-mark area is for ramps and is not a parking space. She said that her son is hearing-impaired and that she didn't have her placard because she was in a rental car and besides, she was only going to be there for 20 seconds. I'm just curious, I didn't know that you can get a handicapped parking placard for a hearing impairment. I tried googling it just out of curiosity, but didn't find anything. Oh well...I kind of felt bad all the way home for saying something to her...sometimes, maybe I should just keep my mouth shut...but..she shouldn't have been parking in what was not a space anyway!
jessica and gary fluaitt said:It happens to us all the time and its very frustrating,last time I was at walmart there was no handicap spots open and then I come to a van acessible spot and there is this little car parked there so I pulled in on an angle and parked in the same spot guess I could have gotten a ticket or something but I didn't luckily. So I guess there is no good solution but I don't think cars should park in a van spot.
Tracie
I have a simialar story. I have 2 other sons who do not have DMD. My oldest son works in a supermarket and he was returning the carts to their slot and he saw a car in a handicap spot with no placard. There was a woman in the car so he went over and asked her why would she park in a handicap spot when she wasnt disabled. Well she said Im waiting for my mother who is disabled to come out of the store. Sure enough out comes a woman who clearly needed the spot. He felt bad at first for saying something but I told him "How would know?". So Dont beat yourself up. And you shouldnt beat yourself up about it either. 9 out of 10 times people dont belong in the spot and they are in it.
Michelle
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