is anyone else frusturated with an easy label?

[goofyforlife]

I have a 12 yr old DD with ADD. (no it's not a made up problem.)

I wish I didn't have to give her 5 medicines a day and go to the doctors every other month and counseling because she's different, and fight with the school to get any type of accomodation because while she's add, she's also gifted so can test well when she wants too.

But are people really getting GAC cards for ADD?

We've gone to DW since DD was 5 and yes it was difficult and yes she had melt-downs if we waited too long, but I never would even think that we should get a front of the line card for that.

 

[mickeymousefan]

Amen, SueM!! My dd6 has small stature (not dwarfism, just bottom of charts small), gross motor delay, fine motor delay, balance/equilibrium problems, a kidney abnormality (that so far requires monitoring but no treatment), a vision field defect, sensory integration dysfunction, cyst in her brain, tremors, facial dysmorphism, and sinus troubles (abnormally large adenoids). She began with ped at 12 mos for obvious gross motor delay, who referred us to PT, who referred us to Ped Neuro,...geneticist...ped opthalmologist...kidney specialist...bi-annual MRI's to check cyst in brain. She is wayyyyyy intelligent, and extremely verbal. Geneticist is positive she has some sort of genetic syndrome, but nobody can figure out which one. She has NO diagnosis. She qualifies for VERY little anymore, for services, because she has NO diagnosis. Special Needs camps, clubs, etc won't take her, BCMH won't either. So if some dr's want to jump at a close or possible diagnosis, maybe it really is so that the child will not slip through the cracks like ours does.


I know that all too well. My DD was born with a heart defect, an intestional defect, a bifid uvula (cleft palate), she has poor hearing and she has a major speech delay. The cartilage on one side of her rib cage has started to overgrow, giving her a pigeon chested appearance on that side. At a year old she weighed 15.5 lbs but her growth improved after her heart defect was repaired and today at 3 years old she weighs 26 lbs. We have had 2 genetic evaluations, and the only other "abnormal" finding the Dr found was that my daughter has "slanted" eyes. The Dr also said she fits into no identifiable syndrome and so we have no diagnosis. She has had an IQ test through the school district and she has "high average" intelligence, but is going into the preschool disabled program because of her speech delay.
It is sooo frustrating to have no label, because people tend to think that if it doesnt have a name, it doesnt exist.

 

[Anne MN]

One of my DD was born with a serious heart defect (was eval for transplant earlier this year, said she was "not sick enough") and I have had her out of school all year with a homebound tutor. she has an IEP, but district is fighting to take away services- they will not give her the hours that she is entitled to- I will see what they have to say tomorrow-if I do not like it, i have the complaint letter all ready to go. DD was on a 504 last year, and I pushed to have her re evaluated, they did not want to do it, but when I filed a complaint (they were doing things that were not on her plan and not doing things that were) they decided to re eval her and she met the criteria for an IEP. (504 are admin by fed gov, and any complaint goes thru the office of civil rights, so you are basicaly filling a civil rights complaint)
DD is very bright, but needs a lot of help with gross and fine motor skills (they are not giving it) and some sight issues (in my district even if you are legally blind, you do not qualify for vision services, so who does?)

I have been thru more than enough grief this year between Dr's and the school, they all make me crazy!
DD is getting what she needs from a very good teacher, she also runs a preschool, and youngest DD will go there in the fall.
DD was labeled from birth, and that was a relief- it told every Dr what was going on and what to look at, and it gets her what she needs, with momma bear making a LOT of noise!

 

[faeflora]

Wow, I just want to tell you all how wonderful you are. As an adult with a disability I know how hard the day to day things are and how hard educational challenges can be for myself.
I just wanted to let you all know that you are all wonderful and your kids are really blessed.
Big hugs and big bunches of pixie dust to all of you

 

[taximomfor4]

I have a 12 yr old DD with ADD. (no it's not a made up problem.)

I wish I didn't have to give her 5 medicines a day and go to the doctors every other month and counseling because she's different, and fight with the school to get any type of accomodation because while she's add, she's also gifted so can test well when she wants too.

But are people really getting GAC cards for ADD?

We've gone to DW since DD was 5 and yes it was difficult and yes she had melt-downs if we waited too long, but I never would even think that we should get a front of the line card for that.

To answer your question, no, there is no such thing as Front of the Line access (unless there as a wish, from make-a-wish foundation). Sounds like you know your dd well, and have advocated unceasingly. Good job, it is not easy . People who get GAC's for ADD kids do it for other needs. Like my dd, who has many different needs. Several are accomodated by a GAC. Many are not.

Beth

 

[taximomfor4]

Wow, I just want to tell you all how wonderful you are. As an adult with a disability I know how hard the day to day things are and how hard educational challenges can be for myself.
I just wanted to let you all know that you are all wonderful and your kids are really blessed.
Big hugs and big bunches of pixie dust to all of you

Aww, *sniff*sniff*
I tear up just reading what these other moms are posting. It is great to get that pat on the back once in a while...Lord knows, the schools don't always appreciate us,

Beth

 

[goofyforlife]

before I get flamed or start to singe...let me rephrase my last post....

one of the first posters sounded fustrated that people were just labeling their kid as ADD to get perks.

I really truly wish my DD had no label....(but alas...) Trust me, from my side there are no perks....

I truly believe that a GAC card could help some children...(i have two nephews that have different forms of autism that probably will never be able to go to Disney. GAC or not, because there are considerable concerns.)

I applaud parents who are able to make the GAC work for them and are great advocates for their children.

I don't appreciate fraud or misuse of the system though.
(such as the GAC for sleeping baby issue.)

 

[kazzie]

I have read this thread with great interest.I am guessing the OP is fairly young? Because one thing us parents of kids/teens have learnt (correct me if I'm wrong) is as another poster said,we are far less quick to judge others and are more understanding of human nature as a whole.I can't count the times a member of the public has made a situation worse by their ignorant comments with my son.My son is 15-he has Aspergers syndrome,Tourtettes,is ADHD has multi phobias and anxiety disorder,XYY syndrome (extra male chromosone) and tarrah to top it all off is Bipolar.At our top children's hospital in the UK-Great Ormond Street hospital- they have told me my son is the most complex case thay have ever seen and have asked permission to do a medical paper on him as they will never see a case like it in their career (the proffessor is the top guy in the country)

But guess what OP,if you saw my son standing still and calm you'd never know it He is the worse case scenario,worse than haveing lower functioning autism (sorry if this offends).People with lower fnxing autism do not have an awareness of their differences to other people,my son has all those problems AND knows he is different and life will never be what he knows it is for other 15 year olds.His psychiatrist said it is that combination that makes for devestating depression.The knowlege you will never be like you could have been.I would far rather as another poster said he had Downs syndrome or was less mentally able.My son cannot even cope with school and hasn't been at school for 2 years.He also refuses every day to go to the 2 hours one to one tuition the borough have set up dor him.

His life is just horrible ( and the rest of the family and myself barely cope) and unimaginable and to top it all off the meds he are on have made him gain over 100lb.He is now extremely obese and absolutely covered in stetch marks.

If I seem upset at the original post,that's because I am! In another post on this forum I tell how I was denied a GAC at MGM 'Because people are abusing it' while the CM looke pointedly at me.This makes me mad now.I'd like her to be around my son is is over 6ft 3 and me 5'1,while he is being extremely verbally abusive and smasing my house up and running in the street naked because he is so overwealmed with anger,rage,depression and lonliness.We are mostly prisoners in our own home.

My son will never be able to live alone or to work or cope with life alone,of this I'm almost certain.But if you spoke to him at a good moment,you'd think I made all this up!

When I now see kids in the street behaving 'differently' I now think I hope the mom is Ok,maybe the child has special needs,could I help etc. years ago I would have thought what a brat, he must be badly brought up.

I have learnt never to judge others now,perhaps the OP will learn that too?

 

[mlwear]

Kazzie/Karen, what an amazing and unfortunate situation your son has (and lets face it, your whole family).
I am not saying this is exclusive to any sorts of disabilities in particular, but it is heartbreaking for moms to see their kids know that they are different and not like it and there is nothing in the world we can do to change it.
Tuesday was field day for my DS (races and games they play outside during school time as a class). First, they positoned him to do a "crab walk" and he just froze, completely confused and unable to make his body move like that. The aide was really good about not calling attention to it and just rushing another child into position. Before the games were over, we had to go in. It was over 90 degrees with no shade and lots of stimulation. As we were walking in, I saw my son turn back and look at the class. He didn't have to communicate with words that he wanted to be with them playing and not going in with his aide and his mom. One of those stab you in the heart moments.
I'm sure to many parents he seemed to function at quite a high level (save the motor skill issues) but that is ONLY because of the accomodatons we provide for him. If he were out there just like all the other kids, he would have lasted only 10 or 15 minutes.
That is point of the GAC, at least I would I think. To allow people with disabilities the access to accomodations that allow them to function at higher level than if they had no support. Honestly, I hate reading the word "perk". It is beyond me to understand how anyone can think that access to a support accomodation is a "perk".
I posted about this in another thread, but I am definitely using an adhesive label on his back. "I have autism, if l am lost please call cell number". There was a huge crowd with so many kids and parents. He was with his class and away from me. I got a little panicky. It was like a sea of people.
Going back to Kazzie's point. I was thinking of this the other day. I don't know why this thread is stuck in my head. But, isn't it amazing the range of disabilities and the different accomodations that are needed. I don't fully understand the GAC system, but from what I have read, I think it is great that they have colors/codes for different supports and don't just put someone's dx on the card as it is so much more realistic for CM's to assist with those particulars rather than figuring out what a dx requires.

 

[taximomfor4]

wow, this thread is a good one for many reasons. We could all probably do with judging less, I bet.

I would never consider going to WDW without the GAC. We put off the trip, thinking we never would get there, until I read about the GAC. That is a pretty telling proof of needing it, I think. Any of us that can honestly say we would NOT be doing a WDW trip obviously NEED the GAC for real. (Of course, not everyone is 100% honest with themselves.) I would never get a GAC "just because we qualify for one". I would get one if I knew that without it, WDW would be out of our reach completely.

 

[faeflora]

wow, this thread is a good one for many reasons. We could all probably do with judging less, I bet.

I would never consider going to WDW without the GAC. We put off the trip, thinking we never would get there, until I read about the GAC. That is a pretty telling proof of needing it, I think. Any of us that can honestly say we would NOT be doing a WDW trip obviously NEED the GAC for real. (Of course, not everyone is 100% honest with themselves.) I would never get a GAC "just because we qualify for one". I would get one if I knew that without it, WDW would be out of our reach completely.

Well said. I know for myself and my family, if my disability was only in need of the wheelchair there is no way I would get a GAC. But, with the complication of heariing impairment and the sensitivity to the sun, without the GAC we would probably not be as excited about WDW as we are.

 

[mlwear]

I would never consider going to WDW without the GAC. We put off the trip, thinking we never would get there, until I read about the GAC. That is a pretty telling proof of needing it, I think. Any of us that can honestly say we would NOT be doing a WDW trip obviously NEED the GAC for real. (Of course, not everyone is 100% honest with themselves.) I would never get a GAC "just because we qualify for one". I would get one if I knew that without it, WDW would be out of our reach completely.

Exactly. A couple of years ago (I guess that is the correct timing) there was a rumor whether true or not that GAC's would not be given for autism. We were seriously considering a trip to Disney at that time. When I read that we couldn't have a GAC for my son, we decided that it was no longer an option. My older DS has been so disappointed that we haven't gone to Disney World. He is 10 and has wanted to for years and only has had to hear of his friends trips . We just couldn't. First, our younger son wasn't ready and then when we heard that we couldn't get a GAC, I didn't think we'd ever go. Everyone is so excited about this trip. We are going a bit overboard on some things, but it has been such a long wait.

I have to get off this thread. It is making me cry.

 

[Talking Hands]

I hate to say this but those of us with invisible disabilities (I hate that term) will always be judged by those who have none. They will always think we get "perks" that cannot and that we abuse the system. People always think negatively of us. And they will always get angry with us for just trying to do the same things they do like going to WDW.
Sometimes I get to the point of wanting to tell them to go to hell (can't use the stronger language here but you all know what I mean) but I bite my tongue. Most will never understand because they have never experienced what we experience and don't know anyone who has. I hope they never do because they won't be able to handle it and will become bitter.
So I have learned to ignore the looks and comments (most of which I can't hear anyway but I can lipread) unless directly attacked. And for the castmembers who just don't get it, I just report them to Guest Services if they are too obnoxious.

 

[kazzie]

I think that was areally good pint about even people with specail needs physiacl or otherwise don't always need a GAC if they are 'doing well' at that time.
Although I made the (rejected) request for assistance last October because of DS's rapid deperioration in coping I had made 5 trips to Disney in the previous years when getting one didn't enter my head even though he probably 'qualified' for one.

mlwear,those stab you in the heary moments,so painful.I can just picture what happened

My DH feels we are alone in what we're going through,but what helps me is to know we're not alone,none of us are even though we might struggle on without understanding even from our nearest and dearest for sure there are people, even cyber people, out there who DO understand

 

[Poohnatic]

Lisa,

Understand completely. We were at AK a couple of weeks ago and saw a child wearing an autism t. Looking at him, the average person wouldn't have realized the child was on the spectrum, but we parents are more attuned to it.

Then I saw dad wearing a puzzle piece hat band...I made a point of going over to the parents and asking them if they knew about the GAC (they did). Our first trip was great because of the new experiences, but the second trip was everything a parent of an autistic child dreads. Fortunately, we found out about the GAC prior to trip three(and had a concrete DX) and it's made life easier. It's not perfect, but to keep my son in the fastpass cue at Peter Pan while waiting is a lot better than forty five minutes of correcting and correcting and correcting some more!

Suzanne

 

[Stacey2grls]

I find all these posts so amazing. The word "perk" really cracks me up. When we were in Disney last month, we used our GAC sparingly, but when we had to we did. There was this one situation, we were getting reading to load onto it's a small world, and I notice someone staring. I turn, look, and this woman is giving us this dirty look! As my family with my 2 DD's 5 and 7 are loading the woman yells "look those kids aren't handicapped! Without missing a beat, I yelled back "my daughter has an invisible disability, and I would wait on the longest line in this park to make my daughter like every other kid"! Needless to say her ignorant jaw dropped. That was one of the few times I remember thinking so fast on my feet! But for our children sometimes you have to be a pit bull! Good luck to everyone!

 

[klndy]

My daughter is now 10. We will be going to Dis.World at the end of this month for the first time. We also have two younger sons. Our daughter is Autistic. At 4, she did blend because she was so cute. But now, at 10, it is obvious she is not her age in years, mainly with social behavior and overstimulation outbursts due to not having her comfort zone.

This is our first trip to D W. My husband has planned it all and MY main concern is my daughters tolerance to it all. Does anyone know a magical way to help us get through this with out the stress that I am expecting?

 

[taximomfor4]

take breaks, plan on lots of down time. We averaged about 4 hours a day in the parks. One day we made it for almost 5, but another couple of days we didn't last over 3. If there are specific needs that she has, consider talking to guest services when you arrive at the park. (Specific needs do not include jumping to front of line/skipping the wait). Definitely bring something for her to do to calm herself (does she read? Color? Little handheld toys work great). Bring items to help control her body temperature, if that sets her off. Oh, and bring a camera to catch those magical moments!!

 

[SueM in MN]

My daughter is now 10. We will be going to Dis.World at the end of this month for the first time. We also have two younger sons. Our daughter is Autistic. At 4, she did blend because she was so cute. But now, at 10, it is obvious she is not her age in years, mainly with social behavior and overstimulation outbursts due to not having her comfort zone.

This is our first trip to D W. My husband has planned it all and MY main concern is my daughters tolerance to it all. Does anyone know a magical way to help us get through this with out the stress that I am expecting?

Here is a
link to a website that has a collection of helpful information.
You can also do a search of this forum for "autism" and you will find a lot of information.
One of the things to remember is that things that work for your family in other settings can also be useful for you at WDW. A lot of people are so stressed out by the idea of WDW, that they forget that. Many of the things you will run into at WDW are things that you and your child has dealt with before, maybe not all together, but you probably have more experience than you realize. So, use whatever you have in your parenting "toolbox", along with things like the GAC and maybe things you haven't thought of before like earphones or a stroller as ways to decrease stimulation and provide a safe haven for your child.

 

[faeflora]

What a great site. Thanks for posting it.