Newly diagnosed DS 3 1/2, have trip planned in September

[jezaduck24]

Our 3 1/2 year old son has just been diagnosed with Asperger's. I know I have so much to learn and am debating if this trip is even a good idea now. We have been preparing him all summer for the trip but I wonder if we are ready to understand how to help him cope. I would appreciate advice, suggstions of things that could come up and how to handle them....honestly, I am just starting to learn and could really use some help.

Thanks so much.....

 

[teachallday]

If you believed that you could make this trip successfully before he was diagnosed, then how has that really changed just because of a diagnosis?

Your son is the same kid he was the day before he had that diagnosis! Remember that.

The Label will guide your future with your son. It will help you, doctors, and educators focus on strategies that will have a higher chance of working with your son. But remember, what works with one child with Asperger's will not necessarily work with another. Just because one child can tolerate a certain environment, does not mean another one can. Every child is different and when it comes to Autism Spectrum Disorders, the differences are vast from one child to another.

Use your new Label to help guide you down a path for raising your child, but remember he is your little boy, who just happens to have a disability. You know him and are learning more every day. When you booked your trip to Disney you knew he had issues. Now you have a name for the struggles you have been going through to help explain them. Good Luck.

 

[bookwormde]

First congratulations on getting a diagnosis at his age, most parents and clinicians do not understand the “subtleties” well enough at that age and just do “alphabet soup” diagnosis.

You have plenty of time to finish preparing so read back through the threads in this section about Aspergers/HFA and the main disabilities section and you will find lots of tips and ideas that you can individualize to your child’s specific needs and characteristics.

You are beginning a journey with your child, which while full of challenges will allow the amazing gifts that you child has to blossom.

I always recommend (if you have not already) to read Tony Attwood’s “The complete Guide to Aspergers” C2007 (available on Amazon for about $25). It will provide insight and references to additional resources. Also find a local Support group for parents of children with Aspergers, this will help you not feel “alone” and give you lots of ideas and clinical and therapeutic “leads”.

At the age of your child identifying sensory differentials and accommodating for them at WDW (and in general) is often the best initial effort. Also managing “tiredness” is also a big factor in reducing “meltdowns”

Good luck and have fun; WDW is a magical place for our children.

bookwormde

 

[jezaduck24]

Just picked up Tony Attwood's book on Saturday after seeing your recommendation, Bookwormde. I've been lurking on the boards since the evaluation process started for my son. Must admit we are going through something of a grief process right now. Our thought process behind should we/shouldnt we go right now has to do with us and wondering if we are equipped to meet his needs now that it is confirmed some of these behaviors aren't toddler shennagans. The little guy just seems so frustrated and anxious - we don't want to add to it. We want to help him be comfortable in his own head and mind.

 

[nursymel]

I completely understand your grieving process.My son was diagnosed in December with HF Autism/Asperger's.He was 4 1/2 at the time.We took a family /mental health trip to WDW in February.It was his 5th time going.It definitely can be a magical place for ALL children(and adults too).If you read through the stories on this disabilities board and the ones for specific trip planning ,you'll read all sorts of wonderful stories about children hitting all sorts of milestones on their Disney trips.
First off,you are traveling at a great time.We go every year also in September.In fact this year we'll be there the 23rd-29th.The crowds are very low.In fact there are plenty of rides we walk right on.Most importantly know your childs limitations if you will.If he can't wait in lines,either avoid the lines or do a fast pass and come back later.DO GET A GAC!!At the first park you are in go to guest relations.(Usually in the front of the parks)If he has trouble with waiting in large crowds ask them to stamp alternate entrance.It really will help.My little guy tends to get very agitated with large crowds in close quarters.You show it to the CM at the entrance to the line of a ride and they will show you where to go.Sometimes you go through the handicapped entrance and sometimes there is a different entrance.It really helped us out in February.Sometimes it's just a quiet place to wait with a lot less people around.Also,if your child has any hypersensitivity to sounds bring some ear plugs or noise canceling head phones.Disney can be pretty louds ,especially some of the rides and attractions.Also,plan where you are going to eat,to decrease that wait time.You can look on different sites like www.allears.net and actually look at menus in all the parks.Lastly...down time,you know your child ,if at 3 pm everyday he takes a nap,don't skip it! Either,walk him around in a stroller or go back to the resort.
I hope you all have a great time! It was exactly what we needed in February.I am usually very strict about getting everything done and seeing everything when we go to WDW.In Feb. I took it easy and just tried to slow down and enjoy it all and it really was one of our best visits yet! Good luck with the trip and with everything

 

[bookwormde]

During the intervening 2 months until your trip, you have lots of time to better understand his needs and to adjust your expectations of him to match who he is. All NT parents grieve to some extent, since it is “wired” in to have and expectation for children to follow the same sociological patterns and view the world typically. While I cannot relate to this exactly, I can to the extent, as an aspie, that I would have had to grieve if I had not had a child who was aspie (or in DS10’s case Aspergers). He will be “comfortable in his head” when he understands that he is different and that is OK, but that while there a significant challenges in having to live in a world that discriminates due to having been generated for different innate neurological survival imperatives, that the gifts that come along with it well out way those. Providing an environment where he can “be himself” and not be constantly expected to be someone he isn’t (NT) and in the most practical sense never can be will reduce the anxiety. Having been provide the opportunity to learn the non-innate skills intellectually, he will be able to decide when and to what extent he is comfortable with enjoying being part of the NT world and when it is just not “worth the effort” and can enjoy the intricacies of his own mind. If allowed to be who he is in the end he will have many of the characteristics that many parents can only wish that their children would be, with a heightened sense of social justice, non discriminatory and honorable, not consumed and driven by current trends, fads and materialism, able to see beyond the standard and mundane day to day existence and see the broader picture and offer his inventiveness and perceptions to try to make the world a better place.

Now as a parent is a lot more “work” to raise a “healthy” spectrum child. You must educate yourself well beyond what most clinicians understand which takes hundreds of hours of reading, research, networking and seminars and courses. On top of that finding and getting him the appropriate services and other environments from clinicians, educators and other organizations is time consuming (but that is getting better as the “state of the art” improves and societal understanding and acceptance of our differences improves) so he can develop the intellectual skills to replicate the innate skills that NT children have. Just remember that a greatly disproportionate amount of the advancements and “wealth” (non monetary) in the areas of science, engineering, art and philosophy have come from individuals drawn from the same gene set as your child, so his potential within his base cognitive abilities is amazing.

Our children need to be exposed to the NT world and WDW is actually very much more of a world that we are comfortable with and can enjoy than most places, at his age you just need to “take it slow” and accommodate any sensory sensitivities, it is a place where he can have “all of your attention” and where you can “follow his lead”. Have fun and go for it, and when you have a “rough spot” you can learn to “accept those” and enjoy the magical moments.

bookwormde

 

[teachallday]

Rule Number 1 for a parent with a Kid with Special Needs who has behavioral issues or a kid on the Autism Spectrum: You must do what you say.

Now this is probably the hardest rule to follow with kids, for there will be many times that the second you say something you know it was a mistake. My little one at the moment is very good at getting what she wants by still staying in the parameters of what I said. Basically I need to be more specific so she can not bend the situation to her favor.

This rule will take you years to figure out and follow and your husband maybe even more , but it is one of the most critical skills to learn when raising a child with these type of issues. I bring this rule up becuase if you have told your child about the trip, you do not want to cancel it at this point. That can cause more problems than it is worth.

Rule Number 2 for a parent who has a kid with a disability: You will never be 100% ready to do something new.

No matter how much you try to prepare yourself and your child for an un-known situation, there is always more that you can prepare for. Yes at the moment you may feel overwhelmed just trying to figure out your child given all the new information, but you will be doing that for years and years and years (okay the rest of his life ). I can not tell you if you are ready for a trip to Disney or not, but I can tell you that if you (for example) wait a year, there will only be other issues causing you to wonder if you are ready to take him to Disney.

I personally set a skill as my criteria. I wanted my little princess to have make believe (or pretend) skills. At 7 years old she really has only just gotten this skill. For example: she is currently watching Little Einsteins and is interacting with the show, but six months ago she would just sit there and watch the show with no interaction. Playing with Little People she will now have them talk and play with them by herself for up to 15 minutes, but 9 months ago she would explore the toys but needed an adult to do the pretending and getting the characters to talk. She has been taking her stuffed animal Mickey Mouse or Pluto with us when we go to the store and strapping them into the seat next to her in the car. She has finally developed an immagination. Before this she would have been facinated by Disney, but not really gotten into the magic of meeting a Princess or had fun goofing around with Goofy. Those were my criteria to determine if she was ready for a Once In A Lifetime chance to go to Disney World. Do I feel like I am ready to take her and deal with her behavioral issues while there, NO. But I am as prepared as I probably ever will be. My day is planned with morning in the parks and afternoons with breaks (naps) and time at the resort. I hope to follow my bedtime routines getting her to bed at the same time. I will miss all the fireworks and nighttime parades (except the one I can see out the window of my Contemporary Resort room), but if I can keep her from as few temper tantrums as possible the trip will be even better.

You will have to decide what makes you ready to go to Disney with your son. At least at one point when you booked the trip you thought you and him were ready to go. Don't let the disability rule your life. Over the years you will learn how to continue with life and just adjust HOW you interact with the world. I know I can not do the parks comando style, while many parents of 7 year olds can. A stroller will be a necessity for us, instead of a convienence like it is for some parents of 7 year olds. We are having many Character meals to meet the characters, instead of standing in line, since she will not do good waiting long periods of time in a crowded line just to meet a character. We are still interacting with Disney, but just adjusting how we interact.

I wish you luck with your decision and learning to view your son from a different perspective. The cycle of grief will come and go over the years, but things will look better. Just remember your son is a little boy, who just happens to have a disability. Places like Disney World are good for reminding us that our little ones are little kids like all the other little kids, not their diagnosis.

My little one wanted to come up on my lap in the middle of the post while watching Little Einsteins. I told her she would have to wait since I was typing. She wanted to know what I was typing. I told her I was typing to someone to give them advise for their little boy. - - Her reply - - Tell them I said hi - - then she went to sit on her beanbag chair.

 

[KirstenB]

Our dd is nearly 4 and has high functioning ASD. My advice would be to make the trip as child-centered as possible. Meaning, let him choose as many choices as are appropriate. I.e. "Do you want to ride It's a Small World first, or Peter Pan?" At mealtime, "do you want chicken nuggets, or the spaghetti?"

In an unfamiliar place our little girl gets pretty overwhelmed and withdrawn. We make the big decisions, like which park to go to that day, or which counter service place to eat at, but we try to let her handle as much of the decision process as she's able.

If possible have your own car, or a rental car. SOmetimes our kids get overwhelmed, and need a hasty exit! A trip back to the resort, or the pool can really help them regroup.

Bring favorite foods as a backup. Our dd likes things like peanut butter and crackers, raviolis, raisins, fruit chewys etc (trying to think of things that don't need refrigerating).

I hope you have a terrific trip!!

 

[jezaduck24]

Thank you all, beyond words, for your wise advice, experience, and hope. I cannot tell you how much it was exactly what I needed to hear. You're all good folks and I hope you know you have done your good deed for today.

And hi to your , teachallday. Thank her for sharing her Mommy with us for a few moments.

*long, deep, determined sigh* We can do this.

 

[Brightsy]

You got a lot of great advice and there's not much I can add.
One thing I will add tho', is that you get some sound-reduction earmuffs. It may be a little tricky with such a young child, but our youngest (7 1/2 yrs. with high functioning autism) would never have survied Disney w/out them.
My guy was DX'd at a little over 2. His first trip to WDW was when he was a couple months shy of 4. He's been to the parks 8 times and is about to have his 9th trip in August.
We've had good trips, and not-so good trips, a couple of amazing trips, and no disaster trips.
Someone already said that your son is the same as he was the day before his DX. They are Sooooo right, truer words and all that...
You had already begun using coping tactics before the DX, even if you didn't realize it.
Watch him at WDW, follow his cues. Have some of his favorite things in your bag. (We always had a few of his fave snacks, a Test Track toy, his Mickey and such with us.) Bring or rent a stroller. Read up on the board about the GAC. And most of all, have fun!

 

[jezaduck24]

Thanks, Brightsy. We have discussed the noise issue - that really seems to overwhelm him. We thought we would try earplugs first and see if he accepts them. Not holding much hope of that so the headphones will probably be the way to go.
Thanks again for everyone's help!

 

[jezaduck24]

Along the lines of the headphones.....
Anyone have any suggestions on how to make these acceptable to Ben? He has a baseball cap that he wears constantly - even to bed sometimes. Should I try to fit them under his cap? Maybe there is a way I can introduce them to him so they seem special or is that just patronizing him?

 

[teachallday]

And hi to your , teachallday. Thank her for sharing her Mommy with us for a few moments.

Sorry, teachallday is not a mommy.

 

[jezaduck24]

Sorry, teachallday is not a mommy.

Ow! oops....sorry. Assumptions....

 

[tiggspring]

One of the other posters sugested knowing where you will eat. I will go one step further. I have fibromyalgia and any stess whears me down. When we went in may we not only knew where we were eating but had quick access to the menues on allears.net on our blackberry. We also had the snack list (ordered by location) from the DIS board so we always knew where we could get a great snack without having to hunt down a shop. It kept my kids from any moans and groans and me from crashing. I'm sure it would help you even more. You can print them out if you don't have a smart phone. I'm on my phone so can't post web pages.will try later if you or another poster doesn't get the link first.the bigest thing with any disability no matter the kind or age of the personb is knowing what sets you off and avoid or negotiate it. We had to stay at delux so I could get back to room in 15min either by monorail or driving to other parks. The time I need to get myself quiet to avoid major crisis. Went in may to avoid crowds and heat.altered meds for the situation etc. Plan very well with flex built in so if its a good day you continue if not do something else. Ride max helped me do this with little effort. I hear tour guide mike good too. Good luck and don't worry your son will follow your lead.

 

[tiggspring]

If you think your son will tolerate ear plugs. I have seen them connected like headphones are. I have seen them in sporting goods stores. These should fit under his hat and not fall out without you knowing and you might be able to attach them to the inside of the hat as well.

 

[tiggspring]

If crowds and noise are a big issue I would reccomend watching wishes and the light parade from the hill at the Poly. Also if you go all the way down to tahiti (we stayed there) you most likely will have a private beach( 3 nights we were the only family there) where your son could play in the sand and watch wishes. No music or noise from either place. Water parade does play some music though.

 

[tiggspring]

The character meals are a great idea for easing frustration but I would add one thing. When booking ressie ask for quiet table in corner or wherever you feel your son would be most comfortable and tell them why. People ask for accomodations for bdays and anversaries and much more frivolous reasons. It may take a little longer to get in but you or dh could take ds for walk while other one waits. This way the only stimulation your ds gets is from the characters not other patrons,flashbulbs, waitstaff ect.

 

[jezaduck24]

Tiggspring those are excellent tips! Thank you so much for sharing them!

 

[tiggspring]

jezaduck24 I am glad to help. Before I got sick my husband and I met in a Children's Psychiatric hospital and then worked in the community with at risk children. I know how scary it can be when you get a diagnosis at such a young age. Kids really do follow your lead. If you don't assume they cant do something and challenge them until they hit a wall you will be amazed how much further they will go than most of us "experts" predict. Wait out the road blocks there will be many and be ready for the next "growth spert" where they surprise you again. Now that I have fibromyalgia I have a much better understanding of the challenges your son faces with his frustration. While my symtoms are different the triggers are the same. It is very easy to get overwhelmed espeically when fatigued but I can say something your son is still learning how explain it to you. It took me nearly a year to plan every step of our trip so that I could be the mom I wanted to be on our vacation ( I wish I had found ride max before I made tentative plans!) Best of luck with your trip. I'm sure you will find a way to make it a magical vacation for your family
Sorry it took so long to get these links to you.

http://www.disboards.com/showthread.php?t=2067447&highlight=snack+list

http://www.wdwinfo.com/wdwinfo/dining/disneydining.cfm