MRYPPNS
Practically Prefect in Every Way
- Joined
- Jan 7, 2007
Looks like you're going to be reading all Spring and Summer long![/B]
Kathy
Good, I'll need something to do/read at those 2am feedings I have headed my way!
A Halloween Adventure in Autism (11/12) New Thread Begun on TR Board!
- Thread starter KathyRN137
- Start date
Good, I'll need something to do/read at those 2am feedings I have headed my way!
KathyRN137
DIS Veteran
- Joined
- Apr 14, 2006
The Cast: (continued)
The ARF:
Now if you haven’t been following along with my (not so) current trip report, I may lose you a bit here. Please accept my apologies. If you have been reading, you know that Ed’s Aunt Rae accompanied us to WDW in November of ’06 and then again in November of ’07.
The two trips were like day and night.
First: a little background. (Okay, a whole lot of background!)
I’m feeling a bit guilty, so I hope you will bear with me; I need to talk about it….
Ed’s aunt is 79 years old. She never married and in her youth she doted on Ed and his brother. About ten years ago, she moved from NJ to Las Vegas to be closer to two of her sisters. Long story short: both sisters passed away and she was very lonely and unhappy out there, so she moved back to NJ. She decided she wanted to live near both her nephews, so she took an apartment in a senior building here in our town.
After watching what happened to her sisters, I think she realized that Ed and his brother were the closest thing she had to children of her own and she wanted to be near “the boys” as she got older. My SIL, unfortunately, never seemed interested in cultivating a relationship with her, and so she rarely sees their family even though they live here in town.
We take her to Mass every Sunday and then out to breakfast. She comes over to our house for birthdays and holidays. Once and a while, I drive her on an errand or to a doctor appointment if the senior bus cannot be arranged, but for the most part she has been independent and completely autonomous. She is, after all, Ed’s aunt and not his mother. (Although she loves to refer to Ed as “the son she never had.”)
As I have grown to know AR over the past four years, I have learned that she has lots of “issues.” She is very sweet, but she is also very high-strung and anxious. She has many ritualistic behaviors. She does have a sense of humor about quirks, however, and has often referred to herself as “the female Adrian Monk” (from the TV show.)
Because she had always talked about how much she loved Disney, and because she was beginning to look wistful and sad every time the topic of our trip came up (and you know that that was pretty often) we decided to invite her to come with us on our trip in 2006. She was ecstatic!
It worked out pretty well, and with proper planning 
we all had a great time. She talked about it regularly in the months following, so naturally when we decided to go back in 2007, we invited her again.
But, somehow things had changed in a very short time period. Aunt Rae did not do as well on that trip, both physically and mentally. (See link to current TR in my siggie if you wish to know more.) She seemed to have aged tremendously and there was a noticeable decrease in her endurance level, mobility, and emotional stability.
It was very stressful for the entire family.
We planned a short (four day) trip to WDW last April so that we could “use up” our Disney Vacation Club points. We knew that with major renovations planned for our home, we would not be making it down for our annual trip in the fall. In fact, at that time we didn’t think we’d be going back until 2010, so it was meant as a little “tide-us-over-until-then” trip.
We talked about it with Aunt Rae. First, we only had enough DVC points left for a Studio, which meant only two queen beds. Second, we were driving instead of flying because of the outrageous ticket prices at the time. Those two things combined to make the question of whether she would be joining us again a rather moot point. I am ashamed to say that I was secretly relieved when she said she did think she could tolerate the long drive down.
Again, the two trips were like night and day. (More on that trip, later.)
Then, over this past summer, she was doing an exercise class at the Senior Center and fell. She had not been going for some time and her friend convinced her to go back. Well, they all zigged and she zagged and down she went!
She didn’t officially break anything, but she spent 2 days in the hospital for tests and then a few weeks in a rehab facility for physical and occupational therapy. The therapies continued for several more weeks once she went home.
She recovered, but not fully. She is very unsteady on her feet and gets winded easily. But she absolutely refuses to use a walker or a cane and I fear she’s just an accident waiting to happen. You can lead the horse to water….
So, when Ed and I began tentatively discussing this possible Halloween trip, the subject of Aunt Rae was like the 800 lb. gorilla in the room. (Sorry, I must pause to laugh thoroughly
at that last image…Aunt Rae is extremely tiny and about 90 lbs, soaking wet!) I vacillated between feeling guilty about not wanting to invite her and feeling justified that it would be the best thing for our family. I vacillated about a hundred times a day.
When I asked Ed about inviting our niece, Catie, and he said that it was a good idea, it finally begged the question, “What about Aunt Rae?” We were driving alone in the car one day and I finally put it out there in the open. Ed was matter-of-fact about it. “Just tell her why we’re inviting Caity this year…she’ll understand.”
Whoa! Hold on there, partner! Whaddya mean, “Just tell her…?”
I felt compelled to clarify this. “You mean, we’ll just tell her, right?” I waited for a response.
He kept on driving.
I kept on waiting. 
“Kathy, she’ll understand,” was all he would say.
“Yes, I do hope she will understand when we talk to her about it,” I replied. He let out a slight sound of exasperation. He had obviously figured that I would be the one handling this delicate situation. “I really want you to be with me when I talk to her,” I continued. “You know how she is; she might get really upset. I shouldn’t have to do this by myself.”
“Besides,” I added, “I love Aunt Rae, but she’s your aunt, not mine.”
There, I said it.
He finally agreed to it, but I am so dreading the conversation. As of yet, we haven’t said anything but as the trip gets closer I know someone will let it slip. I really need to get this over and done with; I don’t want this discussion to pop up unexpectedly one Sunday over breakfast at the Pancake House.
I asked Tricia about how she felt about not inviting Aunt Rae and she really nailed it. “Well, I think it will be very good for us, but very bad for her.” Ugh.
I am feeling so bad about disappointing her. After the first trip, she must have thanked Ed and me a hundred times for inviting her. We had had so much fun talking about the trips beforehand; she even mentioned several times that planning the trips with us “gave her something to live for.” UGH!!
But, it has to be done.
Oh, Lord, please help me!
Next up: The Billy Factor
Kathy
The ARF:
Now if you haven’t been following along with my (not so) current trip report, I may lose you a bit here. Please accept my apologies. If you have been reading, you know that Ed’s Aunt Rae accompanied us to WDW in November of ’06 and then again in November of ’07.
The two trips were like day and night.
First: a little background. (Okay, a whole lot of background!)
I’m feeling a bit guilty, so I hope you will bear with me; I need to talk about it….Ed’s aunt is 79 years old. She never married and in her youth she doted on Ed and his brother. About ten years ago, she moved from NJ to Las Vegas to be closer to two of her sisters. Long story short: both sisters passed away and she was very lonely and unhappy out there, so she moved back to NJ. She decided she wanted to live near both her nephews, so she took an apartment in a senior building here in our town.
After watching what happened to her sisters, I think she realized that Ed and his brother were the closest thing she had to children of her own and she wanted to be near “the boys” as she got older. My SIL, unfortunately, never seemed interested in cultivating a relationship with her, and so she rarely sees their family even though they live here in town.
We take her to Mass every Sunday and then out to breakfast. She comes over to our house for birthdays and holidays. Once and a while, I drive her on an errand or to a doctor appointment if the senior bus cannot be arranged, but for the most part she has been independent and completely autonomous. She is, after all, Ed’s aunt and not his mother. (Although she loves to refer to Ed as “the son she never had.”)
As I have grown to know AR over the past four years, I have learned that she has lots of “issues.” She is very sweet, but she is also very high-strung and anxious. She has many ritualistic behaviors. She does have a sense of humor about quirks, however, and has often referred to herself as “the female Adrian Monk” (from the TV show.)
Because she had always talked about how much she loved Disney, and because she was beginning to look wistful and sad every time the topic of our trip came up (and you know that that was pretty often) we decided to invite her to come with us on our trip in 2006. She was ecstatic!
It worked out pretty well, and with proper planning we all had a great time. She talked about it regularly in the months following, so naturally when we decided to go back in 2007, we invited her again.But, somehow things had changed in a very short time period. Aunt Rae did not do as well on that trip, both physically and mentally. (See link to current TR in my siggie if you wish to know more.) She seemed to have aged tremendously and there was a noticeable decrease in her endurance level, mobility, and emotional stability.
It was very stressful for the entire family.We planned a short (four day) trip to WDW last April so that we could “use up” our Disney Vacation Club points. We knew that with major renovations planned for our home, we would not be making it down for our annual trip in the fall. In fact, at that time we didn’t think we’d be going back until 2010, so it was meant as a little “tide-us-over-until-then” trip.
We talked about it with Aunt Rae. First, we only had enough DVC points left for a Studio, which meant only two queen beds. Second, we were driving instead of flying because of the outrageous ticket prices at the time. Those two things combined to make the question of whether she would be joining us again a rather moot point. I am ashamed to say that I was secretly relieved when she said she did think she could tolerate the long drive down.
Again, the two trips were like night and day. (More on that trip, later.)
Then, over this past summer, she was doing an exercise class at the Senior Center and fell. She had not been going for some time and her friend convinced her to go back. Well, they all zigged and she zagged and down she went!
She didn’t officially break anything, but she spent 2 days in the hospital for tests and then a few weeks in a rehab facility for physical and occupational therapy. The therapies continued for several more weeks once she went home.She recovered, but not fully. She is very unsteady on her feet and gets winded easily. But she absolutely refuses to use a walker or a cane and I fear she’s just an accident waiting to happen. You can lead the horse to water….
So, when Ed and I began tentatively discussing this possible Halloween trip, the subject of Aunt Rae was like the 800 lb. gorilla in the room. (Sorry, I must pause to laugh thoroughly
at that last image…Aunt Rae is extremely tiny and about 90 lbs, soaking wet!) I vacillated between feeling guilty about not wanting to invite her and feeling justified that it would be the best thing for our family. I vacillated about a hundred times a day.When I asked Ed about inviting our niece, Catie, and he said that it was a good idea, it finally begged the question, “What about Aunt Rae?” We were driving alone in the car one day and I finally put it out there in the open. Ed was matter-of-fact about it. “Just tell her why we’re inviting Caity this year…she’ll understand.”
Whoa! Hold on there, partner! Whaddya mean, “Just tell her…?”
I felt compelled to clarify this. “You mean, we’ll just tell her, right?” I waited for a response.
He kept on driving.
I kept on waiting. “Kathy, she’ll understand,” was all he would say.
“Yes, I do hope she will understand when we talk to her about it,” I replied. He let out a slight sound of exasperation. He had obviously figured that I would be the one handling this delicate situation. “I really want you to be with me when I talk to her,” I continued. “You know how she is; she might get really upset. I shouldn’t have to do this by myself.”
“Besides,” I added, “I love Aunt Rae, but she’s your aunt, not mine.”
There, I said it.
He finally agreed to it, but I am so dreading the conversation. As of yet, we haven’t said anything but as the trip gets closer I know someone will let it slip.
I really need to get this over and done with; I don’t want this discussion to pop up unexpectedly one Sunday over breakfast at the Pancake House.I asked Tricia about how she felt about not inviting Aunt Rae and she really nailed it. “Well, I think it will be very good for us, but very bad for her.” Ugh.
I am feeling so bad about disappointing her. After the first trip, she must have thanked Ed and me a hundred times for inviting her. We had had so much fun talking about the trips beforehand; she even mentioned several times that planning the trips with us “gave her something to live for.” UGH!!
But, it has to be done.
Oh, Lord, please help me!
Next up: The Billy Factor
Kathy
eyeheartgoofy
DIS Veteran
- Joined
- Sep 6, 2006
Oh, Kathy! I feel so badly for you having to tell Aunt Rae. I totally agree with your decision, but ... ughh, so hard!!!
I totally agree with your decision, but ... ughh, so hard!!!
mrsksomeday
My Prince uses a power wheelchair!
- Joined
- Jul 4, 2006
you are doing the right thing.
DisMomAmy
DIS Veteran
- Joined
- Jul 24, 2007
Hi Kathy! I'm sorry the ARF has put you in such an awkward position!
But I completely understand... I love my mother dearly, but she is our ARF - for different reasons. (There... I said it!) One of the benefits of staying on property this year is that we can only have 4 people in our room.
But I completely understand... I love my mother dearly, but she is our ARF - for different reasons. (There... I said it!) One of the benefits of staying on property this year is that we can only have 4 people in our room.
MRYPPNS
Practically Prefect in Every Way
- Joined
- Jan 7, 2007
I really do think that Ed needs to take the lead with telling AR....Good Luck with that !
I actually think it would be bad for AR to go to WDW with you. She seems to be one curb slip away from a broken hip. And then what will you do?
And if she had "issues" with Tricia the last trip....imagine what it would be like with 2 teen girls. (By the way I think it's a wonderful idea to bring Tricia's cousin along
Then I think about how dis-jointed your family vacation could become. I'm thinking that you'll give the girls a bit of freedom while in a park (maybe to run off and do a couple rides by themselves...etc.) And I get the impression that Billy and AR don't away like the same rides, so then either you or Ed is taking Billy to RNRC and the other is waiting with AR (or she's waiting by herself).
That being all said....what about a 3 day trip somewhere in the Northeast with AR? She could help plan it and you could get rid of some of your guilt.
I actually think it would be bad for AR to go to WDW with you. She seems to be one curb slip away from a broken hip. And then what will you do?
And if she had "issues" with Tricia the last trip....imagine what it would be like with 2 teen girls. (By the way I think it's a wonderful idea to bring Tricia's cousin along
Then I think about how dis-jointed your family vacation could become. I'm thinking that you'll give the girls a bit of freedom while in a park (maybe to run off and do a couple rides by themselves...etc.) And I get the impression that Billy and AR don't away like the same rides, so then either you or Ed is taking Billy to RNRC and the other is waiting with AR (or she's waiting by herself).
That being all said....what about a 3 day trip somewhere in the Northeast with AR? She could help plan it and you could get rid of some of your guilt.
mousescrapper
DIS Veteran
- Joined
- Jul 24, 2007
That is really well said Heidi...
Kathy I feel your
in all of this, but I agree w/ the other you are making probably the best choice for everyone...even if everyone won't see it that way. But maybe it will go better than you imagine. Keep us posted.
s all aroundScrappie
melk
DIS Veteran
- Joined
- Oct 20, 2000
I think that is a great idea. We don't invite my mom on our family trips anymore (because she now lives in an in-law setup with us...I need the break from her). But before we go I make sure she doesn't feel neglected. Maybe an overnight trip a month before our family trip, or a nice dinner out with us before we go. That way she's "feeling the love" when we leave and we don't feel so guilty about going (well, not that I'm ever feeling that guilty
).I hope all goes well when you break the news to her
.Wishing you the best of luck with the ARF! It's such a tough thing to do, but I'm sure between the two of you, you will come up with a gracious and tactful way of telling her that will spare her feelings in every way possible. I like the idea of taking her on a quick trip somewhere (somewhere safe) to help ease the subject!!! 
Good luck!
Sara
It's such a tough thing to do, but I'm sure between the two of you, you will come up with a gracious and tactful way of telling her that will spare her feelings in every way possible. I like the idea of taking her on a quick trip somewhere (somewhere safe) to help ease the subject!!! Good luck!
Sara
KathyRN137
DIS Veteran
- Joined
- Apr 14, 2006
mrsksomeday: Aww, Tracy! You're such a good friend!
All7OfUs: Ahh, someone with a big family! Welcome! (I'm the oldest of six children, BTW!)
DisMomAmy: I'm trying to pace myself with the reports...thanks for the AR support!
Halloweenqueen: Oh, I love that picture! (I knew the title of this PTR would catch your eye!)
elphie101:
Thanks so much for coming out of Lurkdom to say, "Hi!"
askelton: Goodness, if MNSSHP is half as good as MVMCP, I'll be thrilled!
eyeheartgoofy: Thanks! I really needed that!
Hedy: Tricia's answer was just like your posts: short and sweet and right on point!
mousescrapper: Thanks, you're right of course, but I'm still not ready to break the news just yet!
melk: Thanks for sharing your mom story. I agree, I don't want AR to think we are rejecting her, personally.
mom2mek: I like Heidi's idea, too...
MRYPPNS: A weekend trip...what a great idea! Leave it to you to suggest a spoonful of sugar to help the medicine go down!
to all my DISfriends for your caring and support!!
Kathy
All7OfUs: Ahh, someone with a big family! Welcome! (I'm the oldest of six children, BTW!)
DisMomAmy: I'm trying to pace myself with the reports...thanks for the AR support!
Halloweenqueen: Oh, I love that picture! (I knew the title of this PTR would catch your eye!)
elphie101:
Thanks so much for coming out of Lurkdom to say, "Hi!"askelton: Goodness, if MNSSHP is half as good as MVMCP, I'll be thrilled!
eyeheartgoofy: Thanks! I really needed that!
Hedy: Tricia's answer was just like your posts: short and sweet and right on point!
mousescrapper: Thanks, you're right of course, but I'm still not ready to break the news just yet!
melk: Thanks for sharing your mom story. I agree, I don't want AR to think we are rejecting her, personally.
mom2mek: I like Heidi's idea, too...
MRYPPNS: A weekend trip...what a great idea! Leave it to you to suggest a spoonful of sugar to help the medicine go down!
to all my DISfriends for your caring and support!!Kathy
DisMomAmy
DIS Veteran
- Joined
- Jul 24, 2007
MRYPPNS: A weekend trip...what a great idea! Leave it to you to suggest a spoonful of sugar to help the medicine go down!
Kathy
Halloweenqueen
Whenever Candle Lights Flicker...
- Joined
- Mar 21, 2007
I think you are doing the right thing concerning AR. Maybe something closer to home could be planned for the future. Then she would feel like October's trip is for Catie and the X trip is for her.
Charleston Princess
DIS Veteran
- Joined
- Jan 28, 2008
I am here for your pre-trippie!!! 
Disney Fan Shawn
Earning My Ears
- Joined
- Mar 3, 2008
I agree with your thoughts about AR. I think it is the best way and wish you luck in letting her know.
Great report(s) so far. Keep it up!
Great report(s) so far. Keep it up!
KathyRN137
DIS Veteran
- Joined
- Apr 14, 2006
The Cast: (con't.)
BILLY
Most of you know my DS, Billy, from past TRs, but for the benefit of any new friends here, it is important for you to have a little background info. As the title suggests, this trip will be yet another in a string of endless adventures for a family touched by Autism.
Don’t let the creepy spider image frighten you; feel free to post or PM me if you have any questions….the others will tell you that I don’t bite!
You may (or may not) know a lot about ASD (Autistic Spectrum Disorders), so let me tell you a little about my son…
Warning: This is a Kleenex Alert…
Billy was diagnosed with PDD (Pervasive Developmental Disorder) shortly before his third birthday. Up until the age of about 12-18 months, he hit all the expected developmental milestones and was pointing, talking, and walking as well as any other child of that age. He was a happy, healthy, normal baby boy. Then, slowly, things started to change. At first, the changes were barely imperceptible, but by the time he had reached age two, he had changed completely.
He no longer used any words and made only sounds to communicate. He no longer held my gaze. He developed a strange sort of gait…he walked up on his toes all the time and seemed to just go round and round the room as if on some sort of invisible track. When he was excited, he would do what we (then) laughingly referred to as “the dance of joy.” He would bounce up and down and wave his arms about in a flapping motion.
He stopped eating a lot of foods…their texture or smell seemed to bother him. What he would eat, he would stuff and stuff into his mouth to the point he could not even chew it and he would gag. He had strange behaviors, such as sniffing objects and people, and he seemed to be putting more and more things into his mouth to chew on…even more than when he had been a baby.
He did not play with his toys appropriately. There was no imaginative play, he just gravitated to infant toys with lights and sounds and he would sit and push the buttons over and over. Even so, he could not tell me what his favorite toy was…nor his favorite color…nor his favorite video. He was two years old and he couldn’t tell his Mommy anything at all.
Obviously, he was not developing normally. At the time I really knew nothing about autism. My understanding of autistic children was that they sat in a corner all day, saying and doing nothing, just living in their own little world. And that description did not seem to fit my child. I was confused; I did not know anyone who had an autistic child and this was right before the media began paying some attention to the epidemic.
At his routine 2 ½ year checkup, I finally insisted that my pediatrician order further evaluation. After a long and frustrating multi-disciplinary evaluation process, were given the vague diagnosis of PDD and a list of Special Ed pre-school programs in the area. It was devastating. I remember talking to the case manager assigned to Billy once after visiting one of the schools and trying to express my concerns:
“I just want him to be able….to be able to….to…” I searched in vain for the words I was looking for. The social worker nodded as if she understood and finished my sentence for me:
“…to be able to function in society.” To. Function. in. Society.
That’s when it finally hit me, full force. This was way, way beyond a speech problem. Before that moment, I hadn’t realized that there was any question about whether or not he would be able to basically function in society.
It was so hard, so very hard to accept. We all gaze into our newborns’ faces and dream such wonderful dreams for them. I had the same dreams for Billy, and now they were crushed.
He would never be captain of the team; never play organized sports like his big brother.
He would (most likely) never attend regular school. And if he were ever to be “mainstreamed”, the kids would make fun of him and label him “retard.”
He would never have any close friends, in the traditional sense. He would never date girls. Relationships were out of the question. He would never have children of his own.
He might never even be able to live independently.
It was a dreadful, horrible time…a time of profound grief. We grieved for the normal child who was born to us and for some unknown reason, had slowly slipped away, never to be seen again. It was 2001, the same year as 9/11. What a horrible year.
I’m surprised I didn’t wind up in the loony bin.
Good Heavens! I’ve probably frightened away any newcomers with all this….sorry…..it gets better, I promise! We’re getting to the Disney part!
So, let’s fast-forward to 2003. This is the year that Billy turned five. It was the year we were officially given the diagnosis of AUTISM. And, it was the year we discovered Walt Disney World.
Ed had been to Disneyland as a child and to WDW as an adult. I had never been. He would always talk about how great WDW was, how much he knew that I would love it, how it was far superior to ordinary amusement parks, how beautiful the resorts were, etc. etc. I mentioned in my other TR that he had even wanted us to go there for our honeymoon.
Never having had the opportunity to visit the World, I was tempted. But I was uncomfortable with the idea because he and his ex had gone there for their honeymoon, so we chose another destination. We put the idea on the shelf, thinking that we would enjoy WDW as a family once we had children.
When the kids were very small, going to WDW was out of the question for financial reasons. But, as they became older, I felt that it had really become the perfect time to take them and that we should make every effort to do so. But I was concerned about Billy. Would he be able to tolerate all the stimulation? Would he even enjoy it? Would we?
I’m a big believer in faith, trust, and pixie-dust, but there was no amount of pixie-dust that could magically take away Billy’s autism for a week. We would still have to work around his needs and manage his behaviors while on our vacation.
Back in the fall of ’03, Disney began advertising a seven-for-four deal similar to what they are running now. I began reading every guidebook I could find (this was pre-DIS…in fact….it was pre-internet for me!) I learned that WDW was highly accommodating to guests with special needs and that with a certain amount of planning, I could hope to avoid meltdowns and other problems.
The timing was right. Disney needed to bring in business and our family desperately needed a magical vacation. I booked the trip: seven nights at the Caribbean Beach Resort.
We did, in fact, have a magical time! Billy was five and Tricia seven. Other than him being a bit skittish around non-face characters, Billy did exceptionally well at WDW. In fact, his language ability seemed to be stimulated by the experience and his teachers remarked how much he had “blossomed” after returning from vacation. (We took them both out of school for a week in September b/c I was anxious to go at the time of lowest possible crowd levels.)
Well, you can guess that WDW was a success, because here we are: Disney Vacation Club owners planning our sixth family trip. And Ed was right; I did fall in love with it!
And so did Billy.
To be continued…
Kathy
BILLY Most of you know my DS, Billy, from past TRs, but for the benefit of any new friends here, it is important for you to have a little background info. As the title suggests, this trip will be yet another in a string of endless adventures for a family touched by Autism.
Don’t let the creepy spider image frighten you; feel free to post or PM me if you have any questions….the others will tell you that I don’t bite!
You may (or may not) know a lot about ASD (Autistic Spectrum Disorders), so let me tell you a little about my son…
Warning: This is a Kleenex Alert…
Billy was diagnosed with PDD (Pervasive Developmental Disorder) shortly before his third birthday. Up until the age of about 12-18 months, he hit all the expected developmental milestones and was pointing, talking, and walking as well as any other child of that age. He was a happy, healthy, normal baby boy. Then, slowly, things started to change. At first, the changes were barely imperceptible, but by the time he had reached age two, he had changed completely.
He no longer used any words and made only sounds to communicate. He no longer held my gaze. He developed a strange sort of gait…he walked up on his toes all the time and seemed to just go round and round the room as if on some sort of invisible track. When he was excited, he would do what we (then) laughingly referred to as “the dance of joy.” He would bounce up and down and wave his arms about in a flapping motion.
He stopped eating a lot of foods…their texture or smell seemed to bother him. What he would eat, he would stuff and stuff into his mouth to the point he could not even chew it and he would gag. He had strange behaviors, such as sniffing objects and people, and he seemed to be putting more and more things into his mouth to chew on…even more than when he had been a baby.
He did not play with his toys appropriately. There was no imaginative play, he just gravitated to infant toys with lights and sounds and he would sit and push the buttons over and over. Even so, he could not tell me what his favorite toy was…nor his favorite color…nor his favorite video. He was two years old and he couldn’t tell his Mommy anything at all.
Obviously, he was not developing normally. At the time I really knew nothing about autism. My understanding of autistic children was that they sat in a corner all day, saying and doing nothing, just living in their own little world. And that description did not seem to fit my child.
I was confused; I did not know anyone who had an autistic child and this was right before the media began paying some attention to the epidemic. At his routine 2 ½ year checkup, I finally insisted that my pediatrician order further evaluation. After a long and frustrating multi-disciplinary evaluation process, were given the vague diagnosis of PDD and a list of Special Ed pre-school programs in the area. It was devastating. I remember talking to the case manager assigned to Billy once after visiting one of the schools and trying to express my concerns:
“I just want him to be able….to be able to….to…” I searched in vain for the words I was looking for. The social worker nodded as if she understood and finished my sentence for me:
“…to be able to function in society.” To. Function. in. Society.
That’s when it finally hit me, full force. This was way, way beyond a speech problem. Before that moment, I hadn’t realized that there was any question about whether or not he would be able to basically function in society.
It was so hard, so very hard to accept. We all gaze into our newborns’ faces and dream such wonderful dreams for them. I had the same dreams for Billy, and now they were crushed.
He would never be captain of the team; never play organized sports like his big brother.
He would (most likely) never attend regular school. And if he were ever to be “mainstreamed”, the kids would make fun of him and label him “retard.”
He would never have any close friends, in the traditional sense. He would never date girls. Relationships were out of the question. He would never have children of his own.
He might never even be able to live independently.
It was a dreadful, horrible time…a time of profound grief. We grieved for the normal child who was born to us and for some unknown reason, had slowly slipped away, never to be seen again. It was 2001, the same year as 9/11. What a horrible year.
I’m surprised I didn’t wind up in the loony bin.Good Heavens! I’ve probably frightened away any newcomers with all this….sorry…..it gets better, I promise! We’re getting to the Disney part!
So, let’s fast-forward to 2003. This is the year that Billy turned five. It was the year we were officially given the diagnosis of AUTISM. And, it was the year we discovered Walt Disney World.
Ed had been to Disneyland as a child and to WDW as an adult. I had never been. He would always talk about how great WDW was, how much he knew that I would love it, how it was far superior to ordinary amusement parks, how beautiful the resorts were, etc. etc. I mentioned in my other TR that he had even wanted us to go there for our honeymoon.
Never having had the opportunity to visit the World, I was tempted. But I was uncomfortable with the idea because he and his ex had gone there for their honeymoon, so we chose another destination. We put the idea on the shelf, thinking that we would enjoy WDW as a family once we had children.
When the kids were very small, going to WDW was out of the question for financial reasons. But, as they became older, I felt that it had really become the perfect time to take them and that we should make every effort to do so. But I was concerned about Billy. Would he be able to tolerate all the stimulation? Would he even enjoy it? Would we?
I’m a big believer in faith, trust, and pixie-dust, but there was no amount of pixie-dust that could magically take away Billy’s autism for a week. We would still have to work around his needs and manage his behaviors while on our vacation.
Back in the fall of ’03, Disney began advertising a seven-for-four deal similar to what they are running now. I began reading every guidebook I could find (this was pre-DIS…in fact….it was pre-internet for me!) I learned that WDW was highly accommodating to guests with special needs and that with a certain amount of planning, I could hope to avoid meltdowns and other problems.
The timing was right. Disney needed to bring in business and our family desperately needed a magical vacation. I booked the trip: seven nights at the Caribbean Beach Resort.
We did, in fact, have a magical time! Billy was five and Tricia seven. Other than him being a bit skittish around non-face characters, Billy did exceptionally well at WDW. In fact, his language ability seemed to be stimulated by the experience and his teachers remarked how much he had “blossomed” after returning from vacation. (We took them both out of school for a week in September b/c I was anxious to go at the time of lowest possible crowd levels.)
Well, you can guess that WDW was a success, because here we are: Disney Vacation Club owners planning our sixth family trip. And Ed was right; I did fall in love with it!
And so did Billy.
To be continued…
Kathy
KathyRN137
DIS Veteran
- Joined
- Apr 14, 2006
Billy (con’t.)
Billy has made a lot of progress over the past eight years since that first evaluation. He will be turning eleven soon and he is doing fairly well academically. He reads at a beginning third grade level and his math is at fourth grade level. He loves to sing and he performs in the school chorus, The Notables, and is often chosen to sing solo.
His language skills have improved, but he is not what one would call a good conversationalist!
He tends to be very frugal with words, even though he knows how to use them now. We have to encourage him to “use his words.”“Water?”
“Billy, say the whole thing.”
“I want water, please!”
He attends a school for developmentally disabled children and receives Speech, Physical, and Occupational Therapy. We also enroll him in after school or Saturday programs for sports skills and socialization. And we take him to WDW every year.
Too bad I can’t get that placed on his Individualized Education Plan!!
And so, if you are going to be following along on our latest Adventure in Autism report, I need to clue you in to some vocabulary so that you won’t get confused. I tend to sprinkle these words around the reports and I sometimes forget that you may not know what I’m talking about!
Stimming: This refers to a range of self-stimulatory behaviors. Billy does them almost constantly! It is not clear why, but stimming helps some ASD kids to both center themselves and burn off excess energy at the same time.
Billy used to chew on things all the time and put stuff in his mouth to stimulate himself orally. This is because his mouth and tongue are undersensitive and he is trying to feel sensations there. (This is also why he tends to “overstuff” his mouth when eating, unless he is supervised.)
He is getting better with this as he gets older, but now he is gaining weight because he likes to always be chewing on goldfish crackers, teddy graham snacks, etc. It’s not great, but better than when he used to chew on inedible stuff that could make him choke!
Now he stims mostly by making lots of noises. He is partial to EeeeeEEEEEEeeeeEEEEEE, AhhhhAhhhhAhhhhh, and MmmmmMMMM! It can be annoying if you aren’t used to it (and sometimes even if you are!) Like most kids, he gets louder when he is excited or tired.
His stimming also includes sniffing objects and people, especially their hair. Fortunately, he tends to limit this to people he knows…I’m not sure how I would manage it if he ran up to strangers in the grocery store and began to sniff them!
He does like to sniff the WDW characters, however, so we always warn them ahead of time at character meals and meet & greets.Another form of stimming is scripting. This refers to bits of dialogue and songs from his favorite DVDs and TV shows that he recites randomly and repetitiously. For some reason, he finds it comforting. Like the above, it is often socially inappropriate and can be off-putting to strangers.
There is a certain element of ASHD (Attention Deficit Hyperactivity Disorder) in his spectrum of autistic behaviors. He can also be quite rigid about things such as food preferences and he can be very ritualistic. Things need to be done in a certain way all the time and change throws him off.
Nevertheless, he always, always has a fantastically great time at WDW. And as long as we keep the Billy factor in mind, we do just fine. It’s worth it to see him jumping up and down doing his funny little “dance of joy”
And there isn’t a living soul who wouldn’t break into a smile after hearing his big, raucous chuckling laughter. Because, in spite of everything, Billy is touched by magic
when he is in the World. He can be (just) a kid again.
Kathy
KathyRN137
DIS Veteran
- Joined
- Apr 14, 2006
Thanks, Hedy and Laura for the (always need lots of those!)
But, I'm not so special when it comes to being a mom...I just love him as hard as I can, that's all!
Kathy
(always need lots of those!)But, I'm not so special when it comes to being a mom...I just love him as hard as I can, that's all!
Kathy
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