OT- Disability permits for Autism.. Physical v. Neurological

[DisneyDreams4P&B]

So here is the story,

We have two children, our DS6 has autism (ASD) and the other DS3 has Sensory Intergration Disorder (SID). At the urging of some other friends who have children with the same disorders(and permits), we got a disability parking permit because the boys pull away and when I am by myself with them, they get away from me often (the 6 year old looks like an 8 year old with the strength of a 15 year old) and they have been almost hit by cars in the walk from far off parking lot to store door, more times than I care to think about. Going anywhere by myself with them is difficult but I manage. The last time our DS6 was grazed by a car (going way to fast) and that is what prompted me to get the permit but I digress...

So I only use it when the parking lots are full and I cannot find anything somewhat reasonable to the entrance and we never use it when it is me and my husband together as we each take one. I use it only when absolutely necessary.

The other day I took the boys to the mall to get DS6 to get new shoes and the mall was packed. So I took the furthest Disabled parking spot (as I always do) and got the kids out. A woman was watching us from a few feet away and once she noticed the boys out of the car, she pounced on me. "Why are you parking in a disabled parking space..these are for people who need them..." I tried to explain that my children had neurological disorders but she was not letting me have a word in edgewise. She went on to say that as long as the kids were "physically abled" it shouldn't matter that they weren't entitled to the same privledges that physically disabled persons were (apparently her husband is in a wheelchair). She kept telling me that I should be ashamed of myself and she kept noting that they boys "looked fine to her (in a snotty tone)"... (meanwhile they are squirming, wiggling to get away and becoming upset because the woman is yelling at this point and I am chasing after both as this woman is creating a scene and walking after me as I try to get them to the mall entrance). Finally a security guard came over and intervened, but she went off to him how I should be made to move my car because I was taking advantage.... I explained that my boys had ASD and SID, he saw how upset the boys were and said he would deal with her and sent us on our way, by this time I was crying and to upset to continue our errand.
I have been so bothered by this on so many different levels...

Has anyone else encountered this? Am I and many other parents who have disabled tags for our ASD kids wrong? Is their a hiearchy to disabilites? I am just confused. Is this one more thing that we are going to have to deal with having a child with an "invisible" disease?

Thank you for your comments and posts.

 

[SueM in MN]

So I only use it when the parking lots are full and I cannot find anything somewhat reasonable to the entrance and we never use it when it is me and my husband together as we each take one. I use it only when absolutely necessary.

You have a valid Handicapped Parking permit that your children's doctors agreed with the need for.
You sound like you are using it in a very responsible and "sparing" manor to avoid what could be a very dangerous situation. The permits can be given out for needs other than physical needs.

There are people who will complain about anything. My DD has a handicapped parking permit because she uses a wheelchair. In the summer I would not mind parking far away, but I can't use a regular parking spot because of the van ramp. And, I am concerned about cars not noticing a wheelchair. In the winter, we need to park close by because we live in MN and wheelchairs don't do well in the snow/slush. We have occasionally had people say something to us because "Your DD is in a wheelchair, so it doesn't matter how far she has to go. She's not walking."
So, anyway, there will be people who complain about others no matter what.

 

[Nik's Mom]

DisneyDreams4P&B,
I'm so sorry to hear about that. What an ignorant woman. I knew someone who had a heart condition and was yelled at when she used disabled parking because she "didn't look sick". How can people be so rude!

Just like you, I have a 6 year old autistic ds, and 3 year old ds with SID. I've often thought about getting a disabled placard when I am alone with the kids because my 6 year old is almost as tall as me and I can no longer restrain him when he's having a melt down, or just trying to get away.

 

[joanchris]

Don't worry what ignorant people think, or say, try not to let it get to you. There are many people who "look" fine but need the permit......stamina issues due to long term illness or orthopedic problems, neuro issues. You are doing what you need to do to keep both you and your children safe. If you didn't have it maybe you wouldn't go out as much with the kids, and that shouldn't happen!

 

[disneygal66]

I am so sorry that you had to go through that. I totally understand as I have a 6 yr old w/ASD and a 10yr old W/Anxiety ADD and NVLD. It really makes me mad when people look at you as if you can't or don't control your kids when they are having a meltdown etc. Just because they "look" typical, doesn't mean they don't have other issues. My sister is a RN and she told me to get a permit like that as I take my boys a lot by myself like you do. My friend said that I would be taking advantage of my situation if I got the permit - I looked at her and said try one day in my shoes and you'll see what it's like.
Anyway, I hope that security guard put her in her place and that your next venture to get shoes is more pleasant!! Keep your chin up!!

 

[minkydog]

I'm sorry this happened to you. That woman had no business haranging you like that. You didn't get a parking permit because your child "looks like he needs it"

My DS is mentally handicapped and autistic; he knows nothing of traffic or danger. He is almost as big as me and can pull me halfway across a parking lot. We originally got the parking permit for him, but now DH has one too--he has severe heart & lung disease. The thing is,to look at DH you'd never think anything was wrong. He looks totally normal, but he lives on about 40% lung capacity(or less) making him easily fatigued and breathless. Between DS and DH we have a bit of a mess, and we have also had people make comments.

I just try not to let them get to me--they know nothing of our lives. They don't know that I never use my parking permit when Christian is not with me. They don't know that on "good days" DH insists on walking from the back of the parking lot just so he won't have to endure those stares, even though it means I have to rent a w/c when we get inside because he is so winded. I figure that people who stare just don't have enough disability in their lives, so how could they possibly understand

 

[JenJen]

It is very upsetting when this happens I wrote a poem a while ago about people not understanding invisable diseases I thought I would leave it here for you all to see since you can all relate.

As my eyes crack open I see the Sun Rising It's the break of a brand new day
The Thought of my future scares me It's frightening
I pull the covers over my eyes, Surrender my heart to God and pray

Everyday I struggle just to survive and to get through the physical and emotional pain
I look in the mirror and try to recognize the reflection But all I see is a shell of what remains

Dreams have shattered my goals have began to fade in my tired weak mind
My heart aches my eyes are dry from the millions of tears I have cried

What I have you can not see not with the naked eye
My physical appearance tends to deceive the pain that never subsides

Over the years I have learn to deal with the physical and emotional pain
But if you take a moment to look at my heart you will see I am still the same

So when will this nightmare end? Or will I have the curse for life
Everyday I hear you look so great Those words stab me in the heart like a razor sharp knife

Sometimes I feel guilty for complaining I know those who have it worse
I know my condition will not end with my body in a Hurst

Fibromyalgia is a chronic pain condition that does not discriminate sex gender or age
On good days I feel as if I have the flu and the bad I can barely move. My body goes into a rage

I am too sick to work but not sick enough to get SSDI
everyday I pray that I will get approved so off my parents I Will not have to rely

Since I was 15 I have always worked and took care of myself
Now at 30 I live with my parents and rely on other peoples help

If I had one prayer one wish or one dream that could come true
it would be for a cure so that all with fibromyalgia would not have to suffer like I do

So next time you give a dirty look to someone parking in a handicap spot that is blue
please remember invisible diseases like fibromylagia and that someday that could be you

I would be happy to give up my handicap parking space
If for just one week this condition I did not have to face.

By Jennifer E. Reynolds

 

[dclfun]

I'm so sorry for what you had to endure at the hands of an ignorant and poorly mannered person. It's not just you...I've been glared at even though I'm in a power chair with lots of medical equipment attached and have a service dog with me. Apparently I committed the crime of being younger and taking the last available accessible parking spot that someone else thought they should have. I have been cursed at by an elderly gentleman once who thought I should move because his wife was older. It's a tough world out there sometimes. I try to realize that people are just frustrated with their own situation and have nowhere appropriate to vent. I would never judge a person's need to have a placard and the last time I looked it's first come first served in the accessible parking spots. ---Kathy

 

[SueM in MN]

very nice poem, JenJen.
thanks for sharing it.

 

[tw1nsmom]

That woman should be ashamed of herself!

 

[Disneylvr]

I am so sorry that woman put you through this. I think it is people like her that make some parents of special needs kids want to stay home all the time. For one day I would like to let them walk in our shoes.

 

[KathyRN137]

What a terrible experience! Having an autistic child, I know how non-apparant disabilities are often misunderstood by clueless people.

Sounds like this woman was more than clueless; the nerve of her to "dump" on you like that Sounds like you took the high road, though. Good for you!!

 

[DisneyDreams4P&B]

Thanks everyone for your support. What makes me worry is that there are all of these Mom's with kids just getting diagnosed and due to the lack of knowledge and rampant ignorance of autism in the public at large, that they will be "shamed" into keeping their children at home or "hidden", that they will be relunctant to get the services and things like the permits that are out there to help their child(ren) and to help make it easier on them. Having some real time to reflect on what happened, it just makes my reslove that much stronger to get the word out there that children who have autism are not unruly kids, they are assaulted by the sights sounds and smells around them everyday and are often locked in a world we are not allowed into. It is a shame that with everything these kids have to deal with that ignorance would be at the top of the list.

 

[Nanajo1]

Before I became more obviously mobility impaired I had a similar experience. A woman chased after me saying you parked in an HP spot. I said I have a placard. She didn't bother to look but kept harassing me. I just kept walking, thanking her for caring about the HP parking. But it was unnerving. I don't think you have to have a list justifying your use of a HP spot tattooed on your forehead.

 

[GroovyWheeler]

My mom has had the same comment as SueM has had, when she has me with her. When I am in my power chair, and we have my wheelchair van, it's absolutely necessary that we use one of the van-accessible handicapped parking spaces for the van ramp to be able to fold out. I'm thankful we got my handicapped parking permit, not only for when we use my van, but also for when I travel in my mom's car, and we have my manual wheelchair with us. My mom has health issues like me (although she has Nueropathy), especially when it comes to her ankles and her back. For us, it's easier on her to push me right to the store/mall entrance, with the way her health issues affect her, and especially if it's raining.

We get a lot of Looks from elderly people who sit in their car and watch both my mom and me, walk to the back of her car (although I have to lean against her car for support) when we go to get my manual wheelchair out of the back. We ignore their looks, as we have the right to park in handicapped parking, as they do. We did everything right to get my handicapped parking permit, and it's been very hany at times not only when I have my manual wheelchair with me, but also if I'm using my reverse walker/quad cane.

Samantha

 

[AJKMOM]

I would like to think that I would have replied to that woman, and anyone else who is that rude, "Excuse me, but my children are special needs, we have a legal parking pass. Mind your own *#@*%#@ business."

I can't believe some people, it truly is none of their business, and they deserve to be sworn at. Just my $.02.

 

[playwright]

Hi DisneyDreams,
That's horrible the way that woman treated you. I would've cried too. Your poor kids having to deal with that. Honestly, if I'd been there, I probably would've "lost it" and cursed her out. I've heard that too, that DS "looks normal", he "just needs discipline", "just needs to work harder in school", etc. Some people just don't get it.

 

[LindsayDunn228]

I would like to think that I would have replied to that woman, and anyone else who is that rude, "Excuse me, but my children are special needs, we have a legal parking pass. Mind your own *#@*%#@ business."

Granted, my disability is visible, I would have been moritfied if my mother had called me "special needs" to anyone, let alone a complete stranger.

 

[DisneyMim]

DisneyDreams, I feel your pain and am sorry this happened to you. I honestly don't know what made me click on this thread, fate maybe, but I just read JenJen's poem and I want to thank her. Great poem!! I don't mean to intrude on other people's thread, but I have firbomyalgia and understand what a "hidden" problem can be like. Right now I am able to park anywhere I want and walk, but I can forsee the day when this may not be possible. I would hate it if people thought I was taking a space from someone, but the truth is, as DisneyDreams knows, that sometimes you just can't see why it's necessary to park close. I wish that everyone would be polite and not judge people, but I guess a lot of people like to get into other people's business. DisneyDreams, I hope this does not stop you from doing what you need to for your kids. Don't let other people's rude attitudes ruin your day.

 

[mlwear]

As I read this thread, I think of all the things I would have said to that woman. Some comments I thought of were not so nice. But, maybe a good answer would be stopping, looking her dead straight in the eye and telling her to "Stop. (you said she wouldn't let you get a word in edgewise" then say "you are free to call the police if you want to report a violation, but I have a legitimate placard for reasons you may not comprehend" then said nothing more.

Sometimes I get so angry with people, but as time has gone on I have gotten a thicker skin. I just thank God that he gave my DS to me and not them.

I can see Linday's point. I have spoken with several adults with various disabilities and their childhood experiences with the way thier disability was handled has had a great effect on thier lives.

As far as having a placard for an autistic child, in some cases it is absolutely necessary. I thought of asking for one when DS was younger and maybe should have. I had several incidents of him deciding to lie down in the parking lot, run away from me in the parking lot, carrying him (even as an older child) through a parking lot...it wasn't that he couldn't physically get to the store, it was the danger of getting him from point A to point B and yes there were several times that we just had to leave. I think the point of the placards is so that those with disabilites have access to public places. If the child's behavior is such that you cannot safely get him into the public place, then he is denied access, right?

In VA, we have a specialized license plate for "Unlocking Autism". It is one allows for fewer letters/numbers so that a disabled parking symbol can be stamped on it. Granted, this may often be for individuals with comorbid disabilites, but it shows me that some cases of autism do require disabled parking.

An idea: maybe one way to lessen comments from people would be a window cling, magnet, bumper sticker that said something about autism...I know ASA now has small clings they encourage individuals to use on vehicles to instruct emergency personnel how to deal with an autistic person who may be in the vehicle. There is also the standard "I love someone with Autism"
Getting a bit OT--DH didn't want to bring up at work that his DS is autistc. Whenever we went to work functions, people would give us the "you can't make your kid behave look", so I got him to display a button in his office that says "I love my son with autism". Now, everyone knows and he never had to discuss it.