Thursday, July 7, 2011

Special needs things that make you go "ARRRGH!"


• Dippy illustrations of kids with special needs...and totally depressing books that have no sense of humor whatsoever. ARRRGH!

• When you know for a fact that your child is capable of something, like feeding himself or potty training, only he refuses to do it because he is so used to your helping him. Not that I know any kid like that. Oh, no. ARRRGH!

• When you ask the waitress to have the cook chop up your child's spaghetti or whatever because your child is not fully able to chew the long strands and you don't want to spend time dicing the pasta when it gets to the table so you can keep the focus on your child. And then she delivers the spaghetti to you intact and informs you that the cook "does not do that." As if you'd asked him to make spaghetti in a pasta maker or something. ARRRGH!

• The Pity Stare. ARRRGH!

• When you spot a person who appears to have perfectly functioning legs parking in the handicapped parking spot...and there is a free non-handicapped spot next to it. ARRRGH!

• The screeching. ARRRGH! The screeching.

• When people talk to you about your child while he is standing right there—as if he can't hear or read lips. ARRRGH!


• Overpriced toys for kids with special needs. ARRRGH!

• Any call you have to make to the insurance company. ARRRGH!

• Strangers who say "Oh, he's the sweetest child!" as if kids with special needs are automatically angelic. HA! And... ARRRGH!

• All the doctor/therapy/specialist visits you have to pay for out of pocket because all those ARRRGH! calls to the insurance company didn't get you any-damn-where. ARRRGH!

What's on your ARRRGH! list today?

70 comments:

  1. Hi Ellen - ditched that book from our library recently.

    Hmmm.... things that make me go ARGH... we have a child with DS and people love to say how happy she is. Really, how many toddlers are seriously miserable all the time?

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  2. Ellen, these are all frustrating things. It's also frustrating for a person with an invisible disability to be accused of unfairly taking an accessible parking spot because they don't "look disabled". I'm sure you didn't mean to target that group, but I wanted to raise awareness among any of your readers who haven't considered it before.

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    1. Well, let me answer that as someone in a wheelchair. If a person is legitimately handicapped, visibly or not, they have the responsibility of hanging a handicapped sticker on their rearview mirror or at LEAST owning a car that has a handicapped symbol on the license plate. If a person does not indicate that they have the right to park there legally, they open themselves up to ridicule or judgment. What if someone forgot the placard, you may ask? Well, then I would suggest for that one trip, that you do not park in a handicapped designated spot....and be diligent in remembering your responsibilities next time!

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  3. Finally carving out the time, hauling out all of Gracie's files, her phone book, calendar, etc., to make phone calls to doctors, DMEs, therapy centers, insurance companies, and having to leave messages with every place! Doesn't anyone ever answer their phones anymore?? ARRRGH!

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  4. I'm with Jennifer. I had a friend that had a temp placard because of colon cancer (when she had to go, she had to GO). She was deaf so didn't hear the gripes and comments that I heard thrown her way as she would run from her car to a bathroom. You really never know.

    Not that I haven't ARRRGH'd right along with all of those at one point or another!

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  5. I'm going to guess quite a few people are feeling hurt by the swipe at people with disabilities that aren't as easily seen as Max's is. I have no problem with saying ARGHH at people with no plate or placard parking in a handicapped spot and yes people abuse handicapped plates/placards. There are so many people with disabilities that can't be seen. So many people who are fighting their fight as hard as Max is and not being able to see it doesn't mean it isn't true.

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  6. I'm going to echo the sentiment about invisible disabilities. I have rheumatoid arthritis and have a handicapped placard despite being a healthy-looking 28-year-old. Some days I really can't walk from the furthest parking place into the grocery store, do my shopping, and walk back out to my car without unbearable pain and ruining my energy for the week.

    And the thing about cutting spaghetti... it seems strange to me to ask the kitchen to do that, when I'm fully able (or, really, when my less arthritic co-diners are fully able) to do that at the table. I need my steak cut before I can eat it, too, but I don't ask the kitchen to do it for me.

    But all the other things? Definitely ARRRGH.

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  7. Jennifer, kyouell, Em: You're right. It's hard to tell, there are invisible disabilities. I was mostly thinking of people who temporarily park in spots for the handicapped (whose cars have no handicapped decal) when there are empty ones RIGHT next to it.

    And Em, I understand things from your p.o.v., but there's my parental one: If I wanted to cut up my son's spaghetti, I would just eat at home! It is my night out, too. If I want to just try to enjoy the meal with my family and not have to do any prep, I am going to ask the cook to chop the spaghetti.

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  8. I can feel your pain about the insurance. I finally got my DB a neuropysch eval after a year. It took six weeks to actally get the appointment. It took over 9 months to get my insurance to pay.

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  9. #2 on your list is my biggest ARRGH today! I'm dealing with the potty training frustration in a big way right now. I know she could do it if she'd only try! If she'd put as much energy into trying as she does to fighting me, she'd have it mastered. ARRRGH!!

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  10. Pitty comments made by people who have no idea what to say when they see your kid. Like they cant just comment on the weather. Instead they say stuff that is very untrue for whatever reasons...... Like "Oh he's so tall" (Said about my son who is barely on the percentile charts in height) It's not even the fact that the comment was made, but the fact that it was repeated about ten thousand times. Drives me bat crap crazy.

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  11. I'm also frustrated because when I asked our care(less) coordinator about a handicapped parking tag for our car, she said that it was a stretch that Joey should qualify and wouldn't give us one.

    He has a rod in is tibia and fibula, he has an 8-plate in his knee. He has to wear an HKAFO to be able to walk at all. I've lost count of the number of surgeries he has had on that leg.

    I realize that he is only four years old and is either carried or rides in a stroller most of the time, but I think that he'll soon outgrow wanting to be carried and even the stroller. What will we do then? Stay home if we can't find a parking place close enough?

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  12. A few of my AAARGHs (and there are plenty):
    People who park in the striped place in between the disabled spots... like it's a place to park and not, oh, unload a wheelchair.
    Or people who look at my son and say, sympathetically, "He's so lucky to have you," in a way that makes you think they're breathing a huge sigh of relief that he's not their child.

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  13. Venturing to one of the few accessible parks, finding a deserted section where my daughter can get our of her wheelchair to lay on the equipment, only to have some children (who really were old enough to know better) come racing down the equipment and jump over her like a hurdle with one of them landing on top of her! Aarrgh ( and a few tears at the insensitivity.)

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  14. oooo one of your Arrrgs hurt! While I haven't needed it in a few years, I used to have a handicap sticker. I only used it on days where I seriously was in so much pain and every step was a struggle due to my invisible illnesses. Even on many of those days I didn't use it because I was so tired and ashamed at from all the insensitive and judgmental people around me. They all saw a teenager taking up a spot. I got so many dirty looks, was shouted at, and called names.
    Since I have spent my time and energy as a social advocate, aid, counselor and teacher to/for individuals/families with a range of disabilities... it would be really nice to have that same population include the disabilities that are equally life-altering but not visible.
    While I don't get pity stares - I get the stares of "you are such a bad person" and "you're whiny" whenever I ask for help or utilize a service that I seriously need.
    Which is a huge Arrrgh for me.
    I like to remind people about that quotation by Plato "Be kind, for everyone you meet is fighting a hard battle"

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  15. As a former chef, I have heard many odd request while on the job. Sorry Ellen, I would probably not have cut up your son's spaghetti, that is ridiculous. While I understand that it is your night out, it's rude to request this, entitled
    much? I make the food, put it on your plate and it's up to you to figure out how to get it in your mouth. We even give you forks, spoons and knives to help you on your way. Would you also like someone to spoon feed your children and cut up Sabrina's food (I am guessing she can't yet) too while we are at it? I have 4 kids, one with CP and when we go out to eat or we dine at home, I cut up his food. It's not a big deal, nor does it ruin the relaxing atmosphere of our dining as a family.

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  16. I agree with those that are saying cut up your own child's food. We cut up my niece's and nephew's food - why shouldn't you.

    In addition to invisible disabilities you have families like mine. On more than one occasion I've parked in a HC place - taken the family member inside. Then moved the car, so that someone else can use it.I did this several times a week with my Mother taking her to doctor appointments when she was dying. The spots were at a premium, and I didn't want to take one from someone transporting his/herself. But I needed the space to transfer my mother to and from the wheelchair.

    On other occasions we have arrived found the HC spots taken. Helped our disabled family member inside, parked in the back 40. When we came out if the HC spot was available we used it while we loaded people up.

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  17. agree with most points but:
    - insurance is an American thing with regard to medical treatment.
    - the parking thing in the UK is annoying because the abuse is more to do with cars without disabled blue badges than card misuse. I'm not in a position to question a card holder if they look healthy. Like the other guys say, there are a lot of invisible disabilities.

    It's nice when folk talk to Ashley first or even better just talk to me normally and not just about him because he's with me.

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  18. Clearness: You won't know until you ask! Just because she's saying it's not a possibility doesn't mean that's true.

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  19. Phoenix and kherbert, no offense meant. See comment above.

    jtj, you sound like a great dad. I consider it a small courtesy to ask a cook to make food easier for my son to eat—and to make a meal just a little more relaxing for me. Generally, dining out is not "relaxing"—as you described—because Max tends to lose it. "Odd request"? Not so much. I've actually never had anyone say no until the other week. Cooks have sharpened knives that make quick work of cutting up spaghetti, as opposed to the dull ones you get at the table.

    As for "entitled much"? Hmmm. Well, other than having a maid fetch my slippers before I roll out of bed as someone else dresses my son and then having my housekeeper turn on the shower for me before she goes and helps my son get dressed and then getting our personal cook to pour the cereal into the bowl for me before she helps feed my son and then having the chauffeur drive my children to school and then lounging out in the backyard sipping lemonade as my son gets therapy and then having our bodyguard watch our son as he plays outside and helping him when he gets stuck on the bike because he can't back-pedal, etc.,etc., why, no. I don't think I'm entitled at all.

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  20. Even people with invisible disabilities can get the tag(s) for their cars though. My friend with twins with downs sometimes can't make it to our special needs dance class because other parent park in the handicapped spot to drop off or wait for their kids.

    As for insurance I woudl add getting royally annoyed that no therapists who work with special needs kids TAKE insurance so you have to pay out of pocket (or skip it all together because it is expensive) and then fight for some of it to be paid back by insurance

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  21. Sorry, have to agree that cutting up Max's spaghetti is Mom's job, not the chef's. You really need to reconsider with the volume of responses you are getting on this one.

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  22. I have to say, I'm surprised at the vehemence of some people's response to the whole cutting up the spaghetti thing. I mean, personally, I would just cut the spaghetti for my child or ask my husband to do it. HOWEVER, who among us hasn't ever asked for something similar...french fries cooked "just so" and sent back until they are done to your liking (got this a lot when I was waiting tables), coffee/tea/soup to a specified temperature (yup, got that, too!), something on the side, some kind of "special" something or other. My point is that, while I don't agree with it, I don't think Ellen's request was outrageous enough to warrant snide comments such as jtj's. The solution is simple, Ellen, just frequent the places you know don't look down on such requests and tip your servers well. :-)

    The parking issue? One of my pet peeves, too, when there is no placard/sticker in sight. ARRRRRGH!

    People who ask if I know whether my nonverbal 7.5yr old will ever talk. Um, nope. And I don't know the lottery numbers for tonight, either. *eyeroll*

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  23. For CLEARNESS-- I would go on your state's DMV web site and print out the necessary forms for the TEMPORARY placard (or call them and ask them to mail the forms to you). In most states, there's usually language such as "unable to walk (distance) unassisted." Just because your child is usually carried or in a stroller or such doesn't mean it's "typical" for a child that age. As he gets bigger it will be more of an issue of safety for both of you. Your doc should authorize the danged tag already. Temporary ones are usually good for 1-3 years.

    Fill out as much of the form as possible then take it to the doctor on your next face to facce appointment. Make him/her explain to you in person why they won't authorize it. Then tell them why they are violating your child's rights and jeopardizing his safety.

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  24. I'm with Heather - when people assume 1) my kid is happy because he has Ds - uh, I'd like to think a loving, happy home and family contributes to that! and 2) that he doesn't experience a range of moods like everyone else. ARGH.

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  25. If I can ask and expect my salad to be chopped and tossed if I ask for it that way then u can certainly ask and expect your sons noodles to be cut for him right in the kitchen.

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  26. Ps...to the chef...u make the food. We pay the bill. If I ask to have salt omitted or something made without sauce or any other special request...I expect that my food will be delivered to my table in that manner. If not, I'll find another, more accommodating establishment.

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  27. People who say "Oh aren't you amazing - I don't think I could handle a child with Special needs" - as if we had a choice in the matter!!! But, you know what? We ARE amazing - we just don't want your pity!!

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  28. Hi Ellen,
    Thanks for sharing this blog post, although the book about kids w/CP has been the most helpful one I've been able to find. Any suggestions of others would be greatly appreciated.

    Also the other day, I saw a girl in my college class who appears to be very young and energetic and no medical problems parking in a disabled spot w/a placard. The first thing I thought was that it was a family members placard and that she just didn't want to have to walk a long distance like the rest of us. Maybe I was wrong, but there are many people who do that just out of pure laziness. I didn't say anything or give her any looks, but many people do that. I had a placard for my daughter, but I never used it if she wasn't in the car with me. I think that's what some people are doing. I feel bad for people w/invisible disabilities, but it's those people w/no disabilities but still use the tag that makes it bad. One bad apple spoils the whole bunch.

    Finally, my AARRGH is insurance companies that want to be doctors. The doctor will prescribe a medication or a treatment and the insurance company coming back and saying it's unnecessary. What?!?

    Thanks for allowing the vent and again for a great blog post.

    --Jen

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    1. I dont buy the one bad apple spoils the bunch point. That is how ridiculous laws get approved, Jen. Do we not let a child use a car seat because it is taking advantage? As if but that is how crazy messed up people think.

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  29. A chef who hautily sniffs that it's not his job to fulfill a simple request like cutting pasta to assist a diner with a disability has absolutely no business calling anyone else "entitled".

    Seriously, jtj. Get over yourself and try to see the big picture and where you might fit into it as a decent human being.

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  30. Don't get me started with insurance. For years we had great insurance that accommodated my son's needs beautifully. We just switched to new insurance and we are ramping up for fights to continue get him the therapy he needs to stay healthy and functional.

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  31. I guess it never has bothered me that so many people call my special needs daughter "sweet" and me "so lucky to have her." She is really so sweet and she loves hearing that...I tell her that all the time too. And then I let them know I'm not "lucky" I'm blessed.

    And I never thought of asking the chef to cut up her food. Although I guess I wouldn't mind asking. But when I reach over and spend time cutting up all of her food on her hot plate and her salad and picking out the things I forgot to have them not put in the salad and then finally get to eat my food which is now cold... I love it. Reminds me why we celebrate Mother's Day. I love doing this for her. And I really live hearing her say "thank you mommy, I love you."

    Makes me want to cut up everyone's food at the restaurant. :)

    Anyhow...asking the chef or not asking the chef, I don't have a problem with the idea either way.

    I love being Chloe's mom.

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  32. I wait tables and get all sorts of odd requests. If a guest asked me to have the cook cut the spaghetti You can pretty much bet I wouldn't ask the cook to do it. I WOULD DO IT MYSELF FOR THE GUEST! Apparently the server that denied that request didn't realize s/he works for tips or something?! Decent servers will do damn near anything to make they guests happy. I agree with Niksmom. I'm sure you'll remember which restaurant denies simple requests and which will accommodate them!

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  33. We adopted our son who has Cerebral Palsy. We get lots of "You are wonderful for taking on such a burden" comments which is at the top of my ARRRGH list. Please don't call our son a burden.

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  34. Not just pity stares.....pity SMILES. When someone looks at you and gives you that "awwwwww" sort of smile. My mom says she actually got a mom pity smile once....

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  35. I was undecided when I read the part about spaghetti... I guess I saw both sides. We don't go to restaurants, but we do go to pizza shops. It's normal over there to ask the workers to cut the slice in half or in small pieces.
    But if they forget to do it and I see they are very busy with customers, I just suck it up and try to cut them up myself with flimsy plastic knives.

    What bothers me A LOT is that my daughter (almost 3) is often viewed as bratty because she has a really hard time adjusting to changes. Any changes. Any store we go into she will thrash and flail and SHRIEK. She will do it for less than a minute, until she acclimates, but until then, people give all kinds of stares and make nasty comments.

    In one store a cashier screamed back, louder than my daughter, "No screaming!!!"
    When a fellow cashier looked at her like she was crazy and said something, she replied, "... high pitched scream from hell."

    I was in shock at this display of rudeness. That store will be getting a call from me.

    In a different store, just yesterday, a lady passed us by and said, "Oh my GOD!"
    I was about to reply that I don't think "her God" can't do anything about the screaming, another woman looked at me all concerned and asked, "Is everything okay?"
    Well, as if I'd be shopping leisurely if something was seriously wrong. What did she want me to say? "Actually, no. Call an ambulance." I replied "yes" in a tone like I didn't understand where the question was coming from.

    The comments don't bother me as much as I made it sound, but it's just amusing to me how some people have no mouth filter or manners.

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  36. My dad is temporarily disabled after a bad skiing accident, and the other day as he was crossing the parking lot on his crutches some lady who had stopped honked at him to go faster! He's in his 70's, in the midst of a recovery that could take years, AND he was in the crosswalk! I had a few unprintable words for her!

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  37. Hello Ellen,

    We all have our ARGH moments, and reading all of the comments, I give us all a big round of applause. We are diligent in the quest for the best for our children. Have a Super weekend!!!!

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  38. Gross alert!
    My big AAARGH is changing another poopy diaper/pull-up and trying to ge dried poopy off of his legs. We're embarking on another big potty training session soon. (Pray for us!)

    Oh, and saying for the millionth time, "pull up your pants." Our son pushes his pants and pull-up down so that it doesn't touch his waist, some times his hips, and occasionally even lower.

    Oh, and the comments that imply that I'm something special because of my boys. "I couldn't do it." Yes, you can and would if you loved your child.

    Last one, and this one is internal. Hearing or reading about how wonderful "typical" family trips are. Family trips are so very hard for us (too many reasons to count). We hope that as our boys grow that they will get easier, but now we are rethinking how we can enjoy family time without traveling. (Although, Ellen, we really want to try the trip you went on recently with the whole family. Sounded like a great place.)

    Guess I needed to vent a bit. :)

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  39. My pet peeve is when people treat me like a baby, like I can't do anything, because of my disability.
    Or when I tell people I have a job, they look at me wide eyed and say "YOU have a job?!?"

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    1. That is unacceptable. What century are their minds living in, the 19th century?

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  40. If someone parks in a disabled spot and doesn't have a badge in the window (and I see them coming to and from the car) I call them out on it. If they have a hidden disability they will still have a badge, if they don't have a badge, they shouldn't be parking there.

    My arrrrrgh is people 'waiting' in disabled spaces, so I drive past and think they are all taken and have to park illegally leave my child on the pavement and then put the car in a space that means I can't get him or his chair back into the vehicle without doing the same in reverse. I then see someone coming out of the station or where ever and the person waiting in the car skips out to meet them and then they drive off. Drives me nutty.

    I'm not sure I'd have the balls to ask someone to cut up food for me, but hey I guess you don't ask, you don't get!

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  41. We are getting ready to go out of town and my daughter will not stop asking about it. Constantly! ARRRGH! Repetition!

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  42. I have a problem with people who have no handicapped placard OR obvious signs they *should* have one ( such as being able to see hand controls through the window, or the vehicle obviously having a wheel chair lift). I say this because years ago I had a friend with spina bifida who did not have her placard YET, but had hand controls on her car, and used the handicapped spots. I always worried that she would get a ticket.

    About 3 weeks ago I had a really bad kidney stone attack, and my neighbor drove me to the ER. Her husband has a placard due to some spinal damage, and I was VERY happy she grabbed the placard that day as it allowed us to park much closer to the ER doors and then the pharmacy doors when I was discharged and had to go get my meds.

    As for the spaghetti matter...I have been to restaurants that do not have anything sharper than a butter knife on the table. In that case, the server or the cook SHOULD cut the spaghetti before serving OR bring me a decent knife! I was a waitress for several years, and I DID cut up food, offer extra napkins, etc. I'll probably get butchered for mentioning it...but one day I had a teen customer come in who obviously had some trouble controlling his hands and arms. I quietly asked HIM if he would prefer to have his drink in a glass or in a carry out cup ( lighter, could have a lid on it, no anxiety about possibly breaking it).

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  43. My point of view is that if you have a placard you can use the spots. HOWEVER, a couple of years ago at my older son's old school there was only one disabled spot. I had a 6 year old, a 4 year old in a wheelchair and 6 month old. There was another lady who would get to school super early just to get the spot before me. I have literally watched her race to get the space before me and then HOP, SKIP and jump into school to pick up her child. I then had to park on the other side of a busy street which isn't easy to manuver with a child in a wheelchair and an infant in my arms.
    Just super annoying.
    But I have pulled out of a disabled spot and given it to someone else who needed the space for a side ramp.
    It is frustrating.
    Ellen, have just started reading your blog and am loving it. Well done.

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  44. Medical so-called-healthcare insurance - ARRRGH!

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  45. Tooner, I hear ya! I'll never forget the day my fifth grade art teacher actually asked me if I knew what a circle was, as if being blind made me unable
    to learn my shapes! My aunt said that I should have asked her if she knew what a square was, but that probably would've landed me in the principal's office
    rather quickly! ARRRGH!
     
    Another annoying thing...people asking someone questions on my behalf when I'm standing right there, as if I need a translator! I went to see my case worker
    for medical assistance, and when I approached the front desk and told the receptionist who I was there to see, she totally ignored me, turned to my mom
    who was standing near by, and asked, "What's her name?" ARRRGH! It would be tempting in such situations to play along. For example...
    Receptionist to my mom: "What's her name?"
    My mom to me: "Stephanie, what's your name?"
    Me to my mom: "My name is Stephanie."
    My mom to receptionist: "her name is Stephanie."
    Well, you get the idea. Maybe eventually she would've gotten the point.

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  46. The parking thing is an ever-present headache. My oldest son recently reminded me that I used to leave notes on people's car windshields when I saw them park illegally in a handicapped parking space. The ones that really made me mad were the twenty-somethings that were still dressed in their workout clothes from the fitness center who would bound out of their cars and sprint into the store. Grrrr!

    Over the years I have learned to take people's stares or questions in stride, especially children's, because I believe that usually they mean no harm and are just curious. But a few months ago I was FURIOUS when I was in Walgreens with my son Tevis, who has a VERY severe stutter. I heard an adult mimicking him and saying something like "good God, did you hear that?" Grrrr!

    And, sorry, Ellen, I have to agree with the folks who said that a mom should just cut up the spaghetti herself. My son Marcus, who has a right hemiplegia like Max, has difficulty cutting up meat, and I still cut his meat and he's 30 years old. I can see, if he were dining alone, that he could expect the kitchen or the waiter to assist him, but as long as I'm there, I just don't see that it's a big deal for me to help him.

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  47. My ARRRRGH is personal, not kid related.

    I have severe mental health issues: Borderline Personality Disorder, Depression, and Anxiety. BPD can be very tricky to treat. My personal med combination is an anti-depressant, a mood stabilizer and an anti-psychotic. Oh, and a sleep aid. There is A LOT of trial and error to find the right med combo. Not unusual for slightly complicated medical issues both physical and mental (as I'm sure many of you know either personally or through others). And sometimes (gasp) the more common (cheaper) meds just don't always work for everyone, though you do try them first. My psychiatrist and I had to FIGHT to get my insurance to pay for my anti-psychotic. Which to be fair, it is an off label use in treating BPD. (It helps with rages that have been known to lead to homicides, for some not me.) But generally speaking, since it's a hard core serious med, chances are my Psychiatrist who went through YEARS of medical school, wouldn't have written my script if she didn't think it would be useful. And the anti-depressant that we finally found that did the job? Yeah, since it wasn't one of the common ones that come in generic form, we had to fight for that too. The really fun battle was the sleep aid battle. None of the basic stuff even hints at helping. Mostly because I have 3 other meds running through my body that all affect my ability to sleep in different ways. It takes the really good stuff, and therefore expensive stuff, for me to get any sleep at all. You'd think by sleep aid trial and error med number #12345 they would realize that maybe there is an actual problem, and just agree to pay already without the fight. I mean, since they always end up agreeing in the end anyways. And yes, to some, dealing with lack of sleep is just a fact of life. But I actually totaled my car because I feel asleep behind the wheel because I couldn't fall asleep the night before, had meds coursing through me that make an already tired person even more tired, had to be to work early, and had no one to drive me. Also didn't realize til it was too late exactly how bad of a shape I was in. Luckily there were no other cars (people) involved and I wasn't hurt. But yeah... Hey insurance, that extra money you are spending on the good stuff? Yeah, it's potentially saving lives. And that goes for ALL my meds. Just a thought.

    On another note, I'm currently 31 weeks pregnant and off all meds (though thankfully more stable when pregnant and off meds than when not pregnant and off meds) which means re-finding the med combo gets to start all over again here in about 10 weeks. Sometimes, if you are lucky, the old combo will work again. But um, that isn't a guarantee. We'll start with what did work, and tweak from there. So at least it isn't totally starting from scratch.

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  48. I find people's attitudes on the parking issue interesting. I only use our placard when my son is walking. If he's in his chair we park farther away so someone else can use the spot.

    My husband, on the other hand, usually heads straight for the handicapped spot.

    Another peeve not mentioned yet is the bathroom stalls. It's bad enough having to take a 12 year old, very girl oriented boy into the ladies, but to have the larger stall "occupied" by someone who is not only agile but slim enough to fit into the smallest space . . . I take great delight in parking his chair/having him stand in his walker right against the door in the narrow alleyway blocking the whole thing (have you ever noticed that the big stalls are down a very narrow hall past all the others?). Nasty on my part, but it makes my point.

    If your children are only about 5-6 and already playing the game of "why should I do it, Mama will" . . . . do what you can to break it up now. It gets rough when they add the pre-teen attitude to it. My son and I are going a few rounds over not depending too much on Mama, you CAN do it, Mama WON'T do it.

    Give all your special babes a hug for me,
    Faith

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  49. I am with Ellen on this one anyway back to th queestion The Pity Stare. and When people talk to you about your child while he is standing right there—as if he can't hear or read lips. REALLY makes me go ARGH and causes me to say things I later regret (well sometimes anyway LOL :)

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  50. It's interesting for me to read this and the comments. I'm not a parent of a disabled child, but my sister was severely developmentally disabled. So I've lived with it as a nuclear family member and watched my parents cope with the challenges as they came along.

    What I find interesting, and I think perhaps confusing for those who don't have disabled children, is the contradictions that seem to exist. (I'm also remembering the lively conversation you had about what to say or not to say.)

    Sometimes as a person without a disabled child, I feel like I'm getting slapped down for trying to accomodate too much. At other times I sense a slap down for not accomodating enough.

    It can be rather confusing, I imagine, for a lot of people to know exactly what to do or say. And, as judging by your comments, not everyone with a disabled child feels the same.

    I think we all need a bit more patience and understanding with each other. Regardless.

    Love the quote from Plato.

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  51. Forgot to hit the follow-up box.

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  52. I thought of one more thing that really makes me go ARRRGH, something that's not exclusive to special needs parenting. SO many people in Gens X and Y have not been taught even the basics of respect and good manners. For example, sometimes we have to wait for a table at a restaurant, and there are very few seats for those who are waiting. Marcus has a lot of pain in his lower extremities and simply cannot bear to stand for more than about 10 or 15 minutes, and it's obvious that he's disabled since he walks with a cane and an AFO and a VERY pronounced limp. But on several occasions there have been college-aged men sitting on the bench, and it never crosses their mind to offer Marcus a seat. I also had the occasion to take my 90 year old mother, who had had a stroke and walked with a walker and was also legally blind, to Kroger to get a flu shot. As I walked with her into the store, I simply could not believe the number of people who cut ahead of her as we tried to get in the doors. She wound up waiting for them, when it should have been the other way around as a matter of common courtesy and respect for elders. Shaking head...

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  53. LOL, I laughed out loud when I saw that goddamn book at the top of your list. That's awesome!
    Thanks for these, they're great!
    Let's see, my most recent ARGGH moment: Doctors who say their "job" is to help you "understand the risks," i.e. SCARE THE SHIT out of you, instead of, oh, I dunno, HELPING YOU FIGURE OUT HOW TO AVOID THAT SHIT.
    ARRGGGH!

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  54. ARRRGH Insurance for sure - new seating option is supposed to be available every 5 years but since our son hasn't shown enough growth to justify a new wheelchair in someone's mind (not mine mind you) they willnot even consider a new chair just parts here and there for the old one - and by parts I mean new bottom seat, new back, new head rest, new bracks and new arm rests - hmmm sounds like a new chair would have been simpler?!

    Also it took us 27 months to get a Vest Airway paid for but they were perfectly wiling to pay for numerous trips to the PICU instead.

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  55. Kinda off topic, but related in terms of insurance stupidity... For YEARS medicaid (keeping in mind medicaid is different from medicare which I'm sure plenty of you have experience with since disabled kids are eligible for the medicare) REFUSED to pay 15$ a month for birth control. But were more than happy to spend thousands on prenatal care, delivery, etc from the pregnancies that would have been prevented from the birth control. Keeping in mind that there are plenty of women who can't afford the pill, condoms, etc on their own and it is therefore cheaper just to risk it and maybe get pregnant and let the state cover that cost. Especially since they are also most likely on food stamps/wic so it isn't like they have to spend money to feed the resulting baby, etc. I'm not saying this is common, but it is out there.

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  56. Medicaid coverage (for which I am TRULY appreciative but...) So you'll pay for eye glasses - thank goodness! Oh wait- not the kind of rubber frames my 2 year old needs? Oh- and not the shatter-resistant glass? Oh - and not the kind with scratch resistant coating? So... what will you pay for? Okay - I'll settle for whatever you have. We just lost the glasses or the prescription changed... Oh - he can't have another pair for 2 more years? But the Arrgh is forgiven when our respite care comes in from them...

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  57. People who insist on offering food and drink to my six year old with 22q11.2 who is exclusively tube fed. This is AFTER being told twice in a twenty minute period that the child has never even swallowed his own saliva and can not eat or drink anything by mouth. ARGH

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  58. I soooo know what you mean about insurances. We did finally get some good news about his equipment though. Oh yes about the toys. Outrageous!!! I agree with them all

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  59. - The yellow lines next to HC parking spots is not the place to store store carts ARRGH!

    - Sometimes I feel like I'm being scrutinized when I get out of the car in a HC spot because I don't have disabilities even though my toddler does. We never use a HC spot if he's not with us and if there's a regular spot available next to a HR spot, I'll take the regular spot.

    - Each hospital having different isolation policies (wearing a gown/gloves), everyone telling you something different and they don't even make sense or cover all the contact concerns! Nor do they supply the proper fitting garments! ARRGGHH!

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  60. I see no problem asking for spaghetti to be cut smaller, I'm sure most kitchens cater for much more difficult requests. At the end of the day if you pay for the food, can you not expect it to be served as you wish? How many diners would tolerate 'sorry sir you can't have your steak well done, chef doesn't like'..... ?

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    1. Yeah I am autistic so I always special-order stuff. (plain this, sauce on the side, no cheese, etc.) I am hypersensitive to taste and smell. However, I would go on any ride you ask me.

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  61. Hi, about the people parking in the handicapped parking without a tag, if you have iOS, andriod or blackberry device (max's ipad perhaps) you can DL an app called "parking mobility" and report these jerks.

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  62. Yes, and the handicapped parking violators are the very worst during holidays. Worst yet is the overcrowded aisles jammed so much ye can't get a wheelchair through one, I've declared war, being in radio broadcasting has advantages. I read the violator's plate number on the air between records. Often the Police department gives me a name to go with it. I tell this person how difficult it makes life for wheelchair and brace and crutch users. I also tell him how insensitive and how he is a Jerk. I tell him if listening to call our request line and give his or her side of the story. I record it, bleep out any profanity, and play it over the airwaves. Karma, Baby! Nothing like a 10,000 watt or larger big mouth and the Tennessee Valley listening to it all.

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  63. Stasndardized tests. They do nothing but say that I am stupid.

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  64. Ellen I dont get why the cook didnt do it, its his responsibility to do so. It was such a easy thing to do as well. You're the paying for the food, I hope you complained. I would be furious if a cook ever said that to me, in fact I wouldn't eat there again.

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  65. ITBS testing. I am smarter than the tests say I am.

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Thanks for sharing!



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