tips for visiting with a child with downes syndrome?

[loriandmatt]

hi - hoping all of you could help me help my neighbor.

They will be heading to florida to visit WDW and Universal this July. they have 3 sons, 12, and 8 year old twins. one of the twins has downes syndrome. (hope i spelled that correctly - if not, sorry)

they are concerned about his reaction to flying. (they decided driving would be out as he could not deal with the 16 hour one way car ride.

any advise or tips on how to prepare him for that or make the experinece less stressfull?

Also - any suggestions for the parks themselves.

The mom is concerned about his inability to stand in lines for a long period of time and that he tires easily from too much walking.

any help would be appreciated.

thanks - lori

 

[BCV23]

Our son is 23 so I was hoping someone with more recent experience could help but here goes:

As far as the airplane, our son always did fine on plane rides and he started flying as a baby. I would make sure he has something along to chew or drink to encourage swallowing in case his ears get plugged. Gum works for most people. We always had our kids carry a backpack or small carryon bag with favorite quiet things to do. Our guy with DS has enjoyed books on tape (those Disney stories were favorites of his) and game boy with headphones in both cases. He also loves to draw so we make sure he has paper tablets and markers. But really whatever her son enjoys to make the time go by. We also take a portable DVD player but most trips he doesn't even take that out.

I would make sure he knows about flying but in general I would just not make a big deal out of it. If the parants can be relaxed about it, I think that will come across to their son and it should be no different for him than for his brothers.

The parks however are big and require lots of walking. I think at 8 our son was walking without using a stroller for the most part. He was very active however and except at WDW really never seemed to get fatigued. If this little boy gets tired in every day circumstances, he may need to use a stroller or wheelchair at WDW. If he is small as most DS kids are, I might try without a stroller at first at one of the smaller parks...MK or MGM. Those parks are small enough that if it becomes apparent he can't handle the walking, it wouldn't be too hard to go get a stroller at that point. But if he is larger, it might make sense to try to locate a larger special stroller for him at home or try to rent one.

You're a good friend to help them!

 

[loriandmatt]

thanks so much for the tips. would love to hear from others - the more info the better.

good point about the not making a big deal of the flying. unfortunately his brothers are both freaked about it and she is trying to get them over it before her son with DS notices and chimes in.

the gum is a great, simple thing too. he certainly would not understand the ear pressure thing and it migh freak him out. the gum would help alot.

i am going to talk to her about her plans for a stroller. he might be ok in one of the double strollers you can rent at WDW. (certaninly not enough room in a single) but if she thinks that won't do, i might look into a place in the WDW area that rents the larger special needs strollers.

I don't want to butt too much into their vacation plans, but she did come to me, as i am the disney nut on the block. I just want to help things go as smoothly as possible. I would love to go along if only to watch him experience the Magic. Disney World was made for a kid like Joey. God Bless his heart.

 

[debm]

Hi. Our little boy with Down syndrome is 9. He lives for Disney!!! We were just there in January and we talked ourselves back into another trip in 10 days. He is already packing the clothes!!

We do bring a stroller for him. We have a MaClaren that fits a larger child. It was very expensive but thankfully insurance bought it for us. He likes to walk sometimes--he wants to be in front, leading the parade. We have 4 children and he is the 2nd oldest. I am so paranoid about losing him though. It is getting a bit easier now. Aaron is very good physically but he doesn't talk. He can be like a toddler in one sense and then like a kid his age. That is the hardest part for us. Anyhow we have always used a pass that allows us to use his stroller as a wheelchair. That way we can wheel him into the EPCOT pavilions or into certain shows. The longer I can keep him buckled in the better. It would be a nightmare with him in Fantasmic if we didn't wheel him all the way up thru the crowds. But we've learned this over time. I think that is why we love going to WDW. We know what to expect and the ins and outs with him. Anyhow...we recently switched to another pass. Don't even know what it is called, but it allows us to not have to wait as long. It was just getting harder and harder with him to stand in a line longer than 5 minutes. It has made it much easier on our family. I used to feel guilty --but no longer. Life is just different with a kid with special needs and anything that helps us make it easier is worth it! Hope that helps some. Let me know if you have any other specific questions. Oh and about flying ---we flew in January but usually we drive. I tried to take lots in a backpack for him on the plane. The hardest part is he always wants to switch seats. It's like musical chairs with him. My other kids get really upset. And if we don't switch he gets very loud and a fit is to follow. So we have to pick our battles carerfully. some people just don't understand. It is actually kind of funny--he wants to sit by Mom, he wants to look out the window, now he wants to sit back by Dad, he wants to put his arm around brother......and this all takes place in about 20 minutes! he also loved the baggage claim. We flew in and out of smaller airports which was nice but he just wanted to park himself right in front of where the bags come out and watch. Then he wanted to touch every one of them. Thanks for helping your neighbor!

 

[debm]

BCV---I just read your post. Where are you in Illinois?? We are just to the east of St. Louis. Stationed at Scott AFB. When are you going in May? We just planned a spur of the moment trip and are leaving the 18th!! Need to find Aaron's glasses before we go--they always seem to disappear. Aaron is very active too ---sounds a lot like your son. he would probably walk more at WDW if we would let him but I am so scared with him getting away. He definitely knows his way around and what he wants to do--problem is he doesn't always tell us first! Take care! Debi

 

[SandrainNC]

Hi Lori! That is so nice of you to help your neighbor! I don't think I can be very much help because my son was only 3 when we went to WDW this past December. We didn't fly, so no help there. He did have a stroller but he was also 3. The only thing I can say, is they just need to let him have breaks if he tires easily. And if he has major issues with standing in line, they can get a Guest Assistance Pass (I think that is the right name). My son Ryan is a little ball of energy, so he didn't tire from standing in lines and he doesn't have issues with a lot of people being around, so we didn't need the pass. Sorry I couldn't help more!

Sandra

 

[Peace Mickey Lovers]

Hi,
My daughter is 2 and has Down Syndrome, we usually get the pass to use her stroller as a wheel chair but I am interested in finding out about the other pass available for line standing, see I also have a 4 year old with ADHD and standing in line is not easy for her.

I have to tell you that the characters are wonderful with her, they spend exta time with her and she loves everyminute of it ( my 2 year old).
I found that the airlines are very helpful too.
Make sure you have gum on the plane or something for him to chew on for his ears. And try to prepare him for as much as possible. I find that if I talk them through what is going on it helps keep them calm.

THanks

 

[BCV23]

He definitely knows his way around and what he wants to do--problem is he doesn't always tell us first! Take care! Debi

LOL, boy can I relate to that Debi! Our son is the same. Luckily, he adores his brother who is 2 years older and used to stick to him like glue so that helped. Now that our older son is usually only with us for part of our trips or sometimes like this next one not along at all, it becomes a little dicier.

We have a tradition of having lunch at CRT on our first full day. The restaurant changed lunch hours and last trip I couldn't get a PS early enough to work for us. So I made one for LTT and did tell my son why. I was meeting my DH and DS2 there. Well, they arrived and went to the restroom before coming to the table. Our son finished first and disappeared. Yep, he headed over to CRT!

We're in a Western suburb of Chicago. We too are arriving on the 18th! Have a great trip. I'll keep my eye out for you. We are pretty easy to spot because our DD uses a power chair. Of course, she may be on her own a lot this trip. It's her first since she went off to college and I think she is going to want to spread her wings. WDW is a pretty safe place to do so. Anyway, have fun!!!

 

[debm]

Our son finished first and disappeared. Yep, he headed over to CRT!

This is too funny! It is definitely something Aaron would do. He is really a creature of habit! Once we start something we really can't change it. Sometimes it is something we don't expect: after swimming one time at the YMCA my husband went to Pizza Hut to bring home pizzas. Well, guess what Aaron asks for everytime after we swim now....

We will look for you too although we are driving and won't actually arrive until the 21st because we are stopping at the grandparents first. I hope Aaron won't be disappointed because he has been wanting to see Barney for months and even makes himself little paper tickets. Sometimes we do go to Universal---but not this time. I'm sure he'll be so busy at WDW that he won't care---until we get home and he realizes he never saw Barney.

Have a wonderful trip! Debi

 

[BCV23]

Funny about the pizza. Our son certainly loves routines also.

You have a wonderful trip too, Debi.