I'm sure this has been discussed before but I have to say...I am sick and tired of trying to get a handicapp VAN Acessible parking spot and finding a car..with no lift device or ramp...in that parking spot! Do you guys have the same problem and if so, any advice?

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Hi Laurie, if you'll e-mail me at tracie@christopherscommunity.com I'll send you the file for the parking notes.

Laurie Barton said:
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
I e-mailed the attachment to you. Let me know if there is any problem with it...Tracie

Michelle Scaglione said:
Tracie

My email is: michelle@scaglione1.com. Thanks.

Michelle
I reread my reply and no where do I accuse parents that have to transfer their sons manuelly from their cars into their chairs.....I had to do this at one time too, I haven't forgotten.

So, today while at Wal-Mart I checked out all of their handicap parking spaces....all the signs on the posts infront of each handicap space just says handicap parking.....no van accessible or van parking only.....they are all for any handicap vehicle and they all have the space besides them that I talked about......yes, I know that you need the extra space to manuelly transfer any disabled person who uses a wheelchair from any car....I said, I hate the handicap drivers that part in the space ( usually have stripes in them ) between the spaces....meaning if they do this then someone with a van can't get their ramp/lift out for the person to get into the van and even people that have to transfer someone manuelly back into their car from their chair....by anyone parking in that space it hampers all people using wheelchairs and even the ones that can transfer themselves into their own seats in the cars. Example: I park in a space there is that extra space between the two handicap spaces and it continues this way into many more available handicap spaces.....no one whether you are disabled using a van or even a car and having to transfer someone from the car to their chair should park in that extra space because, you are blocking it for both the van driver of someone using a chair or even if it is the driver of the van that uses a chair themselves or the same for the driver of a car transporting and transferring either themselves or someone else manuelly into a chair and back into the car. I never said a car with a handicap plate should be towed from a handicap space that has the extra space on the side and I never said that a car should be towed from a van accessible space either. Our spaces here are mostly blue, I have been someplaces where they are yellow....every place is different.

I also notice no where did I mention that parents of younger boys don't know how we older moms feel.

And I don't need anyone to tell me that we older moms need to help the newer moms, because here in Maine....I am the mom of almost the oldest of Duchenne boys left....the other boys we all started out with together in the 80's - some have passed away, some are a couple of yrs. younger than my son......and I am the mom that MDA here in Maine has permission to share my contact info with all new parents and I answer any of their questions they may have, and if I don't know the answer then I either find it for them or point them in the right direction. I didn't have it this good, I had to find out alot of things on my own. I am the mom who has traveled this Duchenne Journey the longest with the other moms coming right up behind me here in Maine and I support each of them that come in contact with me.

I have not belittled any new mom with any of my replies I have made in any discussions.

And yes, new moms do know how tiring it is and want to just get mad at the whole thing....right now it is tiring emotionally for them maybe not physically but definitely emotionally....don't you remember.....just trying to comprehend it all, after learning of the dx of Duchenne?

The cards that I have to place on people's windshields weren't so, nasty as what the cards you used said on them, they politely reminded people of the law and how hard they made it for people using wheelchairs to get access to their vans and cars.....we can teach others nicely, because if we are nasty to them then they judge us all harshly and get the attitude oh, well @#$% them all ( meaning eveyone who uses a wheelchair no matter what your disability is ).

My complaint was with any handicap driver whether it is a van or car that parks between two handicap spaces because they made it hard to access a van or manuelly transfer someone into a car, it isn't a parking space it is the space for transferring whether from a van or a car. They need to park in a space any handicap space.....not park between two handicap spaces that is the extra space provided for transferring...that is why the stripes are there, it isn't a parking space it is the transferring space for anyone that uses a wheelchair whether you drive a van or a car. Then I agree with having them towed till they learn not to park in the extra transferring space added to the handicap parking space. I never sad tow a car parked in a van accessible space, as they can park there as they are allowed to, here anyways in Maine they are......problem is ADA should be the same everywhere in the USA ,there shouldn't be different ADA laws separately in each state.

I hope I have explained a little further what was saying in my first reply.


Julie Gilmore said:
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....
When I said moms of healthy kids don't know how we feel and to ignore them is just that....because, if you don't ignore that comment it'll just upset you, they mean well, but it's one of those sentences that will upset you from time to time, they don't know how we feel, how can they their kids are healthy......I never said that parents of younger DMD boys don't know how we feel.....it reads moms of HEALTHY KIDS DON'T KNOW HOW WE FEEL.....thru my Duchenne Journey I have heard so many of my friends who have healthy kids tell me they know how I feel.....they can't possibilty know how I feel or how you feel.

Again, no where in my reply did I state that moms of younger boys don't know how we feel!.....I stated moms of healthy boys don't know how we feel. I explained exactly what new parents will go thru, the same as we parents of older boys go thru today and when we first found out and throughout this whole Duchenne Journey we have been sent on.

Even with our guidance.....I will not sugar coat it, even new parents will also be shocked when they reach the part of the Journey that we all have passed thru and survived and they too will experience caregiver burnout along the way....caregiver burnout doesn't just happen from the physical part of caregiving the emotional part can burn you out too! I will help new families with the truth I will not lie to them, it is a hard Journey, and you will get thru it, you may think how I can I do this, you will know why because, God instilled his trust in you, yes you to care for one of his special children....it is going to be hard no matter what I tell you or anyone else. "Many" notice I said many not "all", of the feelings you are feeling now, don't go away they are here to stay throughtout the whole Journey and new feelings will reveal themselves.





Julie Gilmore said:
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
Excellent you did a excellent job here describing your feelings.....feelings I will speak for myself as being true.....you know parents shouldn't have to share findings of what things like being on predisone can do to our boys....this should be coming from our MDA Dr.'s to help us make a decision based on the true facts, some "notice I said some and not all " really aren't doing their jobs in our boys best interest....I liked our first MDA Clinic team, didn't really care for the head of the team after the first 2 Dr.'s left....he has left and not sure who will take over....will find out at my son's next visit in April. The only thing that bothered me from the reply(s) I left to your ? at the beginning of the discussion was things were said that I didn't say....like about moms of younger boys not knowing how the moms of older boys felt, never said that....I said moms of healthy boys don't know how we feel and my complaint was about how some handicap drivers park in the added spaces between handicap spaces that are used for transferring either from a van or car not about handicap cars being parked in van accessible spaces I said they are for the use of vans and cars.
I am glad your son made it thru his surgery, it is hard watching our sons go from a baby to a toddler and when he reaches his teenage yrs. to go backwards when they should be moving fw: to become independent young men.....it is hard and it doesn't get any easier as we move further down the road on our Duchenne Journey....have to be honest if I lie or sugar coat it, it doesn't help any of us to do so!!!!

God Bless you and your family,
Cheryl

Linda said:
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
I want some so please email it to me At TanyaTreas@aol.com
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
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.
You have nothing to feel bad about she was not parked in the right spot. Hearing is alot different than walking in my opinion. But then again I am very biased. YOU DID NOTING WRONG!!!!!!!!!!!!! She Did regardless.

tracie said:
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
This woman didn't belong in the spot either. If she needs the handicapped parking then she should go to the dmv and get a placard.

Michelle Scaglione said:
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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