Behavior Challenge Thread

[GraceLuvsWDW]

Hi everyone. I'm currently at Disney. Just got here today. It has been a VERY HARD week for us. My brother, his wife, and my nephew were visiting. It was very difficult! They just don't understand my dd and her issues and are constantly demeaning both my parenting skills and her behavior in front of us. It is so exhausting to be in this role, the obedient non-bucking-the-system person who takes the abuse. It has really depressed me. My mother made a statement in front of my dd that she could handle my nephew for the day but she couldn't handle HER alone. What does this do for my dd? Really, it goes right over her head, she doesn't even know any better, people have been bemoaning her behavior her whole life and she responds by being even more in their face and aggressive. But it breaks my heart SO MUCH.

Then my brother and his family leaves Monday and Tuesday am we are off to WDW, and I came with three friends of mine and one of their sons and I have been here 8 hours and have already heard the whole spectrum of how no one can handle my dd's behavior, and is it any wonder they state to me. I just want to run to the nearest mountain on my own. I get my DD, I somewhat understand her, more importantly I empathize with her extreme fears, anxieties, and idiosyncratic behaviors. Why am I surrounded by people who judge my dd by the NT world? They think it is I who LET her behave this way. She fell into a pool today with all of her clothes on and completely lost it and freaked out and I understood, this is horrible for her, she hates water. Everyone says you need to "water proof" her and I say she'll learn to swim in her own time and they think I create her fears. Anyone else have this problem?

Anyway, I've begun reading the Mislabeled Child and The Complete Guide to Asperger's and am learning a lot. I just feel so alone. Like I can't integrate into the normal world where people don't believe in "psychological" disorders for children much less neurological disorders that aren't substantiated by any testing.

Anyway, here's hoping my trip gets better!

 

[mechurchlady]

DisDreaminMom and Grace you need lots of hugs and I will put you in the Coke Corner with dole whips and drinks. Here is a chocolate shake as earned one today.

NT cannot understand how bullying, shunning, and demanding that others conform to their NT world can harm people. At time I feel like other groups that has been bullied, shunned and insulted because of race, religion or features. I spend too much time hiding form them and trying to conform.

Grace we all understand you and that you are doing the right things for your kids. Disabilities board is a family and we all know of someone who is neurovariant or has a relative who is neurovariant or has some other limitations taht makes that person different. There is not way to change the NT mind but we NV are pretty adaptable.

chin up and remember that you are right and there is no way of changing them. Just draw the line and say no more. That if they do not stop their ways then you are walking. That is what I do with my mother. Stop it or that is it, end of story.

Big hgus for everyone
Laurie

 

[bookwormde]

DisDreamMom,

Most states have an agency that handles “cruelty to animals”. It might be worth giving them a call to see if there is anything that can be done under your states laws to help this dog, and what you would do if you “find” the dog in the future. I am a big golden fan and are hoping that one in need “finds us” in the near future, so these types of situations frustrate me also since there are lots of families who would love to add this dog to their family.

GraceLuvsWDW,

With family and close friends you have to be direct and tell them (in a written letter) that their comments in front of Grace are damaging to your child and constitute abuse (not to mention how rude and inconsiderate it is of your feelings). Then let them know that if they want to become educated about Grace that you can “loan” them books which if they will read will help them understand and support your daughter so that they may help her with her special needs.

In reality some will not care enough to do this and with family you are sort of stuck (although pointing out that they are being abusive is appropriate), as sad as it is you my need to limit exposure to family members who are abusive. As for friends, those who deeply care about you and your family will take the time and interest to “learn” how to support both you and Grace, as for the others I always question how good a fiends they really were, and it is best to end the friendship and as many of us have done find new friends who are willing to understand and support your special family. There is a certain amount of mourning that goes along with this but once you are through it both you and your child will be much better off.

I do not know if you have any support groups for sensory or aspergers that you can attend in your area but most find this very helpful, and can be a great place to meet new friends who are “pre-educated”.

I am sure that falling in the pool was difficult “in the moment”, but I have found that when these type of exposures occur “naturally” that in the long run provide a “point of reference” for our children to evaluate their sensitivities and their other than momentary impact. It has been my experience that while it may take some time, that children (who were supported in a non judgmental way about the event) go back to being “near the edge” (places where they may me exposed to there sensory sensitivities) which seems to be part of their “natural” learning and adaptation process.

bookwormde

 

[BeckyScott]

I think, unfortunately, we all know (or have personally experienced) parents of kids with disabilities who have lost friends or turned their backs on family.

It's a sad fact. It's hard enough to become isolated, to not participate in stuff that is considered regular childhood events, or just the daily grind, that sometimes the effort involved and the bad results make those things not worth it to try. Then you throw in fighting battles with the "public". But on top of it, you can't always even depend on your own family.

Thank God for the internet.

I personally have a big mouth. (I know, that's shocking to hear) Ironically, I didn't have a big mouth until I "landed in Holland". I was a very polite and pretty meek person. Now, I'll say anything to anybody. Even family.

IMHO, after vacation is over, I'd have a big sit-down with the family members involved. Hand them over every piece of diagnostic paperwork that you have. And tell them you won't be criticized anymore. That it's not their job to critique your parenting skills. That if they would like to actually educate themselves about your child, you can provide them with materials, but until they have educated themselves and until they are willing to offer help, they don't need to darken your doorway.

If your child was perfectly "normal" (as it were) it is unacceptable to criticize parents in front of the child. If you started criticizing DB's kids in front of him, what would happen? Why should it be different for you?

There are probably other underlying issues. Family members sometimes think, okay, if the child's disability is something inherited, then where did it come from? Did I pass it on? Or for your bro, if I had another kid could that happen to me? Or of course, it must have come from your DH's side. Or in our family, I recently had to take a big family history for a dr appt, and amazingly enough on both sides of our family there are no psych/neuro issues at all, everyone is absolutely perfect. Yeah, um, okay, possible but seriously doubtful. Because I already knew of three others in the family who are ADHD (on both sides of the tree) and somehow nobody mentioned this to me. And they knew why I was asking and what I needed to know. I guess ADHD doesn't count? Or is everyone just too busy acting perfect to get real? One of those ADHD's, the parents have the child so drugged he is barely recognizable, and it's because that's what the dr told them to do and they won't question the dr. Won't look beyond meds. Think that they can just fix him and then he'll be normal and they can have their perfect family.

You will find people that love your daughter. And they might not be related to you. But you will find them. I have a dear friend who I have known for years. We lost touch for a while but when we reconnected I found out her boys are pretty much alphabet soup. And her family acts just the way yours does. Her kids frustrate me, mine frustrate her. But we do have a non-judgmental place to vent. She doesn't totally understand, no, but it's as close as I'm going to get In Real Life.

 

[GraceLuvsWDW]

Thank you all for your supportive words you have no idea how much they meant to me when I opened the boards to check for supportive replies. Today went much better. I took the kids (alone) to MK today and we had a ball. It seems when my dd is with only me and perhaps (sometimes) one other child she does fine. We used the GAC which is a GODSEND to us because we just would not be able to do Disney without it-no way, no way! My dd's stroller is her safe haven, a place of respite, a place she has control and I only remove her from it to actually put her on the ride. This means SO much to me to be able to have that available to her. She fully feels "safe" in her stroller and seems to be able to tune out the crowds inside it.

I did have to put up with the other child saying "she should walk" and "don't you want your legs to be strong?" to her and also begging for him to be able to ride in the stroller sometime and that she wasn't being "fair" to hog the stroller. I told him he didn't need to be concerned with it but he kept on and I thought to myself-this is very representative of the NT world. Here is a 7 year old boy, already indoctrinated into a world where if my dd needs a stroller he's there to judge her and I thought-this is where it starts. People, well meaning people, who tell their children no way you walk only babies need strollers. This is just a small example of the judgment that starts this early.

I need to find the strength to overcome these judgments and stand strong as an advocate for my child. But I was raised in a "buck up" stiff upper lip, you don't show weakness til your dead environment.

And the comment about my brother having issues, well you hit on a very valid area there. Of all the people I know, my dd's behavior MOST reminds me of my brother's growing up. They thought he was mentally retarded as a child and now is almost savantly genius. I think there is something about the fact that my brother was made to fit in to a world where he's always felt so different and now he feels everyone should. You'd think it would make him more sympathetic but my brother has always lacked empathy.

Anyway, going to AK tomorrow, it's my dd's 6th birthday!

 

[BeckyScott]

I need to find the strength to overcome these judgments and stand strong as an advocate for my child. But I was raised in a "buck up" stiff upper lip, you don't show weakness til your dead environment.

It isn't showing weakness. I can see how you'd see it that way. But it isn't. It's really just the opposite.

You're not going to meekly say "pretty please leave us alone, we're fragile and we're getting our feelings hurt". Doing that isn't going to help, because I don't think pity is something that they're going to be capable of showing.

You need to stand with your hands on your hips "NO. Done. I won't tolerate it any more. It will stop and it will stop NOW. It is not up for discussion. I'm the parent, and if you don't like the way I'm doing things, then don't let the door hit ya on the way out."

It's a big difference. You are, essentially, standing up to a bully. We all know the drill-- the only reason a bully is a bully is because people let them. The way to get rid of the bully is to get in their face and not back down. Because really they're insecure. And it's hard, hard to do. But you're not doing it for yourself, you're doing it for her. To protect her. And to show her. Maybe she doesn't understand, but probably maybe she really does. Kids pick up on things. If not the words, then the vibes.

Your DB probably does have some big issues. Maybe he does see himself in your daughter, and thinks he is helping in some way. But you're her mom and you don't agree, and she's not his kid, and that's the end of it.

Seriously, I got into it about a month ago with the MIL. And it was a bad one, like she stormed out of our house and the whole thing. Telling me I didn't know what I was doing. When she truly doesn't understand what's going on. She says DS screams too much. Yeah, he does. He screams a lot. Uh, he has autism and she's known that for 6 years. And we're working on the screaming, but I guess you all know there are a lot worse things he could be doing besides screaming. He's not a head-banger. He doesn't throw or hit things. He just screams. She says if he keeps screaming she's going to leave. Well, sorry, it was nice seeing you. When you have something helpful to say, let me know.

 

[C&G'sMama]

Hey all,

We've been experiencing technical difficulties with our computer and I don't like to post from work. So, we haven't been around, I'm on my lunch hour at the library, after picking up DS's tux for the wedding the kids are in on Saturday. Anyhow...

GraceLuvsDW - I agree with everyone else. Stand up to your family. It may not be easy for you at first, but beleive me it gets easier. Both DP and I had philosophical differences with various family members on other issues. We stood our ground. I'm even more there with my kids. Your daughter is of value. The nerve they have talking about her like she's not there and to blame you as a bad parent. Like Becky said, sit 'em down and tell them a. this is what the drs say. b. this is how I'm handling it. c. End of discussion. If you want to help, great, if you want to walk in my shoes, great. Beyond that, "knock it off". They may get mad at you, they may not speak to you for awhile, who knows? Is that really a bad thing? It's not your fault they're being less than supportive, throw it back on them. Stand tough, when you need to break down, don't do it front of them. Come back here for shoulders to cry on, hugs and Dole Whips. I'm sorry but I'm 45 years old and I just don't have patience for stupid people (even if I'm related to them).




Ann

 

[maganda]

Hi everyone. I'm currently at Disney. Just got here today. It has been a VERY HARD week for us. My brother, his wife, and my nephew were visiting. It was very difficult! They just don't understand my dd and her issues and are constantly demeaning both my parenting skills and her behavior in front of us. It is so exhausting to be in this role, the obedient non-bucking-the-system person who takes the abuse. It has really depressed me. My mother made a statement in front of my dd that she could handle my nephew for the day but she couldn't handle HER alone. What does this do for my dd? Really, it goes right over her head, she doesn't even know any better, people have been bemoaning her behavior her whole life and she responds by being even more in their face and aggressive. But it breaks my heart SO MUCH.

Then my brother and his family leaves Monday and Tuesday am we are off to WDW, and I came with three friends of mine and one of their sons and I have been here 8 hours and have already heard the whole spectrum of how no one can handle my dd's behavior, and is it any wonder they state to me. I just want to run to the nearest mountain on my own. I get my DD, I somewhat understand her, more importantly I empathize with her extreme fears, anxieties, and idiosyncratic behaviors. Why am I surrounded by people who judge my dd by the NT world? They think it is I who LET her behave this way. She fell into a pool today with all of her clothes on and completely lost it and freaked out and I understood, this is horrible for her, she hates water. Everyone says you need to "water proof" her and I say she'll learn to swim in her own time and they think I create her fears. Anyone else have this problem?

Anyway, I've begun reading the Mislabeled Child and The Complete Guide to Asperger's and am learning a lot. I just feel so alone. Like I can't integrate into the normal world where people don't believe in "psychological" disorders for children much less neurological disorders that aren't substantiated by any testing.

Anyway, here's hoping my trip gets better!

Hugs to you Graceluvs... You're not alone.

 

[GraceLuvsWDW]

Well, thanks everyone. I really know what you are saying is true and I need to find the strength to stand up more often. Today we were at AK and the friends I am with-one of them said "when you allow her to behave this way what does it say to our child?". I said "You should teach your child not to be affected by others behaviors." And then he mumbled that they started teaching their children to behave at age 2. I said yeah, and I started seeing developmental specialists at age two and haven't stopped trying to help my dd either. But they won't change, they aren't believing that her issues are neurological, only behavioral. Nothing I say or show them is going to convince them. I can show them her list of diagnoses and 7 page report from the Dev Pedi but they'll say it's hogwash, only serves to increase the revenue of the Dev Pedi. These are the people who are judgmental and I won't change their minds.

Which leads me to my next pondering-why am I around these people???? That's the true question.

Anyway, it's helpful for me to have the support of you guys here on the boards. REALLY! Thank you guys. And yesterday I had a REAL dole whip float, so really, how bad can things really be?

 

[mechurchlady]

All our lives we are pounded in the head by the media and society to belong to groups. We crave that social bonding and need to be with others even if they hurt us deeply. it is not just NT but race, relgion, gender, sexual orientation and moral values that can get us into cliques that cannot see that they are hurting us.

It is like the school girl who wants to fit in despite hazing and bullying by the "in crowd". You cannot retrain people who think the wrong things and will often end up with ulcers, stress and in trouble because of narrow minded people who cannot change their way of thinking.

Been there done that. It is shocking and hurtful when people tell you that your disease or disorder does not exist or that you are a failure in life because you do not meet that person's standards. You are not a failure in life and are doing a lot better than some parents with kids like yours. Each tiny step we rejoice in and we celebrate accomplishments even if it is something so simple.

chin up and stand up to them bullies or you have to learn to ignore them which is hard. I know you are having a hard time with them and they are ruining your vacation so take charge and tell them that they can get lost. It is supposed to be your vacation and not a lecture tour on how not to be an unfit mommy. It is hard to deal with bullies but I know you can do it.

Hugs and chocoalte shakes and doles whips
Laurie
==========================

As you all know I lost $37 a month in state SSI cut backs and now am losing another $20 in SSI. That is over $600 and I am making less than 2007. All the increases from social security are gone this year and it is time for prayer for those on disability who do not have a mother like mine and who are going to be living with less money and even forgoing medications because of the cutbacks. I wish they would also cut the wages of some government fat cats instead of those of us who worked for our disability checks.

I am skipping my trip to the whole foods market because of budgeting and will have to watch online games.

This morning was bad as mom had a meltdown. She wanted to go to sleep after the move but I needed to program the television. She demanded seh have channel 7 and did not care about what I was saying. It takes a while to program that television. Finally we both are in meltdown and when she calmed down enough I did program the television. She was happpy this morning with her channel 7.

My lesson from this is to train up a child early so they do not end up like mom and me. I love mom but anyone want a slightly used hypersensitive neurovariant for a week or two? She can sweep the house, mop, and help with little chores.

Hugs
Laurie

 

[pudge the fish]

I have been MIA- soo busy this end of school year stuff is killing me-

first it would take way too long to catch up so I will say:
to all and dole whips

GraceluvsWDW- I have asked myself the same question- why do I deal with stupid people- People need to mind their own business and shush

after 23 inches of rain in less than a week we were lucky not to be flooded but many friends were and it is bad in our area of FLOR-E-DA
of course it is raining again TODAY and will rain tomorrow.. we need the rain but all at once??

DD is dealing with end of school issues - she will miss many friends and a few are moving to other schools and we get meltdowns-
She FINALLY got diagonsed with Hypoglycemia and they will keep checking for diabetes- it's kinda close- if she eats normal on a schedule we go good- when she gets running around or forgets to eat her snack she has issues.
of course this kid SCREAMS when they take her blood- very dramatic.

I have been in a slump and not really caring about too much right now- just blah feeling i guess.

i did get an AP pin code and booked our room over labor day weekend-
we stay every labor day and got a REALLY cheap deal on a room. I sold some stuff on Ebay and made about a dollar more than I needed for a value room for 3 nights
That perked me up a bit and then hubby said he would take me to the AP sale on Saturday at DTD- which means I have to get up at 3:00a.m.....to get in line by 6 a.m. if i skipped shower and food I could get up at 4:30 but I would smell bad - HMM maybe it would keep people away from me at sale tables??
I don't do black fridays but I guess I can do a WDW Saturday

I need to visit here more- I feel better already-

again to all

 

[SueM in MN]

A lot of good advice here. It is late and I got home late, so all I can add is some

 

[GraceLuvsWDW]

Well guys, here on my last night of the trip and I've never wanted a Disney trip to end so much in my entire life.

Last night, perhaps in part due to my reading the posts here the proverbial **** hit the fan. I really stood up and told my friend here that her statements and actions toward my DD were damaging and just plain rude. It ended up to be a 3 hour conversation where she said we'd need to agree to disagree. She stated that she feels my dd obviously DOES have neuro issues, anyone can see that, but that my responses to her reactions were too "soft" and she felt that created more negative behavior. It was a long drawn out discussion but I basically said you don't know my life, you don't know what I deal with. And she said you're right but I can tell you what I would do, and a week with my dd would "change" her behaviors. Does anyone have any idea how much this INFURIATED me?????????

I said if you were my friend and you supported me you would believe me when I express that I have tried IT ALL. And she said you don't stick with any technique long enough! I said, how do you know? What do you know about what goes on? She doesn't understand that NT techniques don't work on my DD. And I told her I feel very unsupported and like the "crazy" person where everyone is whispering around me about what a bad parent I am. She said no not bad, just wrong! Can you believe this? Then she said we would just have to agree to disagree. I said I'm not putting up with any of this any longer. MY days of "ignoring" these sideways remarks are OVER.

And so today was tense but I felt better having said my peace and you know I can't change them, I just can't. So feeling horrible and depressed about their feelings and beliefs serves no benefit to me. I just have to find a way to let it go and believe that perhaps out there somewhere there ARE people who won't demean my DD, won't shun her due to her idiosyncrasies. My DD freaked out tonight on Soarin. She's ridden it before and has done fairly well but tonight she started shaking violently on the ride and I asked her what was wrong and she said she was "cold" but she shouldn't have been cold, she was well dressed so I think she was misinterpreting the fear she was feeling. And also tonight we watched Illuminations (one of my all time favorites ) and she again starting shaking in a quite pronounced way. I don't know what this is about---not her usual way of reacting---perhaps the stress of this trip is getting to her. She has really been acting out in extreme ways on this trip which worries me. She's been "baby talking" and whining and not saying any words. A boy in the park had a light saber and she completely dissolved and wouldn't recover until the saber was completely out of her sight. My "fiend" thinks this is her manipulating me to change her surroundings to her liking. She says you can't do EVERYTHING to try to make her comfortable, she's needs to feel uncomfortable sometimes. Does anyone GET what I try to do to prevent major meltdowns? Does anyone GET that I try to avoid reaching "that place" where it is so hard for her to recover from?

Anyway, we go home tomorrow. I'm counting the seconds. I think tomorrow
I will separate from the group and try to get some hours of quality time to help my dd's decreased coping skills. She usually does SO WELL is Disney but this trip is just too much for her.

I feel like such a lousy mom....

Thanks everyone for your support. It DOES mean a great deal to me!

 

[bookwormde]

You are a great mom. You do what is best for your child and that is the definition of it.

You cannot do much about people that want to remain ignorant.

One thing to remember is that our children develop intellectually, socially and from a sensory perspective somewhat (maybe that is an understatement) out of time sync with the nature of the world around them.

She is “growing up” so things that she would not perceive as a risk before are intellectually now a concern to her and with the sensory differentials and the lack of the innate “social buffer”, this can create anxiety which will lead to reactions that you are seeing. You are doing what you are supposed to be doing, exposing her to the experience of the world while protecting and reassuring her when she is anxious.

I am sorry the trip was not the fun you had hoped, with all the “adult” issues, but I am sure that for Grace even with the challenges, that it was “fun” for her and as importantly was a “growth experience” for her. You are there to love and support her so she is learning that she is safe in the end even when along the way it did not feel that way to her.

bookwormde

 

[C&G'sMama]

GraceluvsDW
You are a good mom. Sometimes we encounter people with strong personalities that always have to be right. Let them come to you. Stand your ground. I KNOW (been there) it's not easy. Can you find other outlets for you and your daughter? You might want to back off from this friend, for now. You may come back together you may not. For our kids we make sure they have various "groups" of friends. Neighborhood friends, church friends, YMCA friends, school friends etc. So they always have somewhere to go. We as adults need to kind of do the same thing. Once a week I take DS to Lego Playgroup with kids all over the Autism spectrum. It's not something we've immersed ourselves in but on that one day noone is judging him or me. They get it because they're all living it. And for the most part our other friends are understanding (again, I'm too old to put up with peole that aren't, but it took me several years to get to this point).


Good Luck

 

[pudge the fish]

Graceluvswdw

I dislike greatly when People insist they know how BEST to treat your child or how you should parent YOUR CHILD

I have been told I baby my DD and at times I have- and it has been to prevent a melt down- (not a temper tantrum cause she wanted HER way or something she was wanting in a store and I have said no to)
but a "I feel bad and need a time out to rest , eat and chill" meltdown. And I have "given in" as some would say because I am tired or sick myself and just don't wanna deal- I guess that makes me a bad parent- and some days it just doesn't pay to fight when they are being quirky as I call it.

I am quirky myself and there are things I can't stand to be around- and when I am hurting, I hate to be touched. people then say I am cold and distant - I'm NOT- I just hurt and leave me alone
You are doing what is BEST for YOUR child - so ignore theose who insult and
keep on keeping on


I am SO glad school is OVER for now we have summer sorta planned and hopefully with a calendar of plans we can avoid "MOOOOOMMMM, I'm BORRRRREDDDDD"

 

[C&G'sMama]

C & G were flower girl and ring bearer in a wedding yesterday. It was for the girl who has been their baby sitter since C was 1. She's the daughter of a very dear friend of ours. She says she'll still baby sit but she's out of college now, has a "real" job and she's married. Anyway... The kids did great. Of course we were worried about G. It was a Catholic Service but not a full mass, thank goodness. I was born and bred Catholic. But if it had been a full mass I'm not sure he would have made it. But he did great and so did DD who proclaimed, "I didn't even need the paper and pen".

Now for chuckles. They had originally planned on having the real rings on the pillow. We had visions of DS rolling around on the floor pulling the rings off and all of the guests searching for the rings. (he did pull the ribbon off the practice pillow). You know our kids are so literal. The wedding coordinator convinced everyone to have the Best Man carry the rings. In the mean time G gets a "being a ring bearer" book from the groom and a pocket watch. He was quite incensed when he found out he wasn't carrying the real rings because the book says otherwise, and what's point if he doesn't have the real rings then he's not a real ring bearer. Then we had to convince him flowers weren't just for girls and it was okay to wear a boutinear (sp) and that yes, all the guys had pink flowers in theirs, not just him.

Well, the service was lovely, he did a great job. While he did try to raise the kneelers up and down at least he wasn't texting in the middle of the service like one of the groomsmen. I told the guy I would have whapped him if I could have reached him. We were sitting behind G, just in case.

The kids got to ride in the Limo for pictures with the rest of the wedding party. They took them down to a local beach. (Rochester sits on the southern shored of Lake Ontario). The groomsmen ask G if we wants to swim. "No silly, I have my tuxedo on". Then they pretended to throw him in the lake, he told them he didn't want a picture of that because my mommies won't let me go in the water with my tuxedo on.

We picked up the kids from the beach and then took them to the hotel where my in-laws were staying, they came to babysit since the bride said she was busy that night. We then went to the adult only reception where we stayed 'til the end. We are getting ready to get the kids because Grandma and Papa kept them overnight.

The bride and groom are off to Disney for their Honeymoon (where else). Her mom has DVC had SSR so that was her gift to them (plus the wedding).

We are now off to get the kids.

 

[GraceLuvsWDW]

We are back home now, trying to get back to normal. Our last day I separated from the group and took my dd alone to MK while everyone else went to Star Wars Weekend at DHS (I just knew she wouldn't enjoy all the characters there-some are quite disturbing to even me). My dd and I had a great time on our own at MK! No meltdowns at all eventhough she decided to spend her Birthday giftcard at Bibbidi Bobbidi Boutique. I thought this was going to be difficult for her since she hates anyone to brush her hair and touch her face but she insisted so I let her spend her card however she felt. We were able to obtain a last minute ressie and I told the woman she was sensitive to the hair brushing and they did a fabulous job of explaining everything and asking my dd permission to do each thing: combing, spraying, applying makeup. Afterwards my dd said it was painful and she wouldn't let them sprinkle pixie dust on her head but I was quite proud of how well she did!


We were able to ride many of the rides our last day at MK, I pretty much let my dd run the itinerary. She even rode Splash! Usually the water rides are a no no for her but she was very brave and has come a very, very long way!

She was very happy that everyone wished her happy birthday all week with her birthday button and the castmembers-well I cannot say eneough positive things about them. They are so sweet and caring and when they talk to my dd and when she doesn't respond they don't even miss a beat---it's as though they have all had training in dealing with kids with variancies. Really went a long way in making my dd feel comfortable and "normal".

Some new behaviors did pop up on this trip and I will have to sort them out now that we are home. She was shaking again on the airplane and I tried to "ignore" it to see if it was behavioral but she seemed to be unaware of the shaking. I am going to make an appt with the Pedi Neuro because her OT wants her evaluated for possible seizures. (She said that even before our trip due to my daughter "zoning out" at times and she rolls her eyes in a very peculiar way sometimes).

The trip did end with all of the group going their separate ways in a relieved way with no "thank you for planning this trip" or "we had a great time". One of the things that bothered me a lot is that they were focused on criticizing Disney a lot, talking about how it's not real and they even said the World Showcare was exploiting those cultures for Disney's benefit.

Now that it's over I guess I learned some valuable lessons and I need to take the time now to learn from mistakes and go on not broken from it but stronger for the experience.

We have a trip planned in Sept and I'm seriously considering cancelling it. It may just be too much for my dd at this time.

Thanks and I hope all of you are doing well!

 

[DisDreaminMom]

hey guys! Greeting from Cocoa Beach! We had a great couple of days at WDW. Drove 14 hours all night and got to WDW on Wednesday. Hung around CBR (liked it well enough, would certainly go back) and kids swam. Thursday we got up early and did EMH at MK. Back to room for swim and nap all afternoon, then to Poly for Luau. Food was great and lot's of it, then it stormed so badly that they cancelled the show. But we just went back to MK and had another BLAST there since it was cool and everyone left.

Friday we did EPCOT and I took the wheelchair. Best thing ever. Totally changed the day for the positive. it was cool enough and DS had enought adrenaline on Thursday, but Friday it was hot! So trip was totally saved by wheelchair use. DD was angry about it at first, but noticed brother had no melt downs all day and was much happier, also.

So now we're at the beach where it's raining a ton, but OK. Will update later. Red previous posts and so sorry we couldn't meet up with lady who was having terrible time. No judgement from us, here! Sorry about stinky people. Life's too short for that crap. Update soon after Space Center.

 

[GraceLuvsWDW]

Here is a link to a new documentary which I thought might interest some of you:

http://www.autisticlike.com/index.html

and another interview on it:

http://www.youtube.com/watch?v=eG0tX6zFT98

It's all about SPD kiddos like my dd.