Subject: Vacations

Hi everyone:

In reading the e-mail we find we have several topics on which we wish to comment. The first of these is vacations. Others to follow are: socializing, dental visits and braces, diapers, and relaxing & position.

We have a bit of difficulty when it comes to calling a trip with our angel a vacation--our question is vacation for whom? We learned very early that a trip with David (age 28) required so much preparation and so much work while away from home that staying home provided more of a rest. As David got older we placed him in respite care but while we were away, obstensibly relaxing, David wasn't far from our thoughts. We eventually learned that the best way to give David a vacation was to take day trips--amusement parks, zoo, etc.

We (four children and two adults) did take one 5-week trip from Maryland across the northern United States to Seattle, down the West Coast hitting the National Parks along the way down to San Diego (zoo and sea world) back to Phoenix, the Grand Canyon and then back east to Maryland. For this trip we rented a motor home and we found that this was the way to travel with an angel. Travelling was great, David loves to ride and listen to music (to this day the family knows the Lawrence Welk tapes by heart and knows what song comes next and Lawrence Welk is David's favorite TV show) and we could either stop or keep moving depending on the circumstances to eat and attend to nature's calls, etc. Sleeping worked out fairly well. Carolyn slept with David most of the time and she was able to contain him and after a week we got into a fairly good routine. (It would be a good idea to acclimate the family to living in a motor home before leaving home.) This trip worked out so well for us that we purchased a used Motor Home that same year and made a number of shorter trips in it.

When visiting relatives, David would sleep in the room with us on a roll-away cot. We would have to assure David that we were there and remind him once in awhile to lie down. As he grew older he learned that he was to remain in his bed.

Hope this helps.

Carolyn and Fred Windbeck (David Age 28)

Subject: Vacation

Hello everyone, Well, We made it back safely from vacation. It was quite the drive. We left here on a friday at midnight. Drove until 8pm on saturday where we got to Miles City ,Montana. We got a motel room, one with two double beds. I gave Coralynn Melatonin after we ate and she went to sleep. Then we drove from 7am to 8:30 pm sunday evening when we arrived at my dads house in Cloquet, Mn. She wasn't too bad on the trip but by 11:30 she was crying at the door and wanting to leave. I gave her her night meds and a melatonin and we went to bed. It was about 90 degrees in my dads trailer house and you can't open the windows because he has no screens and the mosquitos are so big there they call them their state bird. So she would'nt go to sleep which made me not beable to sleep and we all three were in my dads very small double bed. I swear it was a twin. None the less, we did all fall asleep but woke up to a horse flie eating at my arm, my dad lives out in the country where all the insects are fifty times as bad as in town. So that night we got a motel room near town with two double beds and air conditioning. I didn't even noticwe that in order for Coralynn to get the door open all she had to do was turn the handle. There were no other locks on the door. So we had to sleep with a cooler in front of the door just incase she was up all night and we were asleep. Then I got my brother to borrow us his VCR while we were in town and I had brought Coralynns Little Mermaid cartoons just incase and I put those on for her to have something to watch if she was awake(they only had 4channels). We had a big family reunion and I had many invitations from all sorts of family to stay at their house and they all said that Coralynn being up all night would not be a problem but Mike felt this was the better solution and I think he was right. Besides noone had air conditioning except us. I did feel like a pain when we went visiting family I had not seen since Coralynn was 9 months old but again they all said it was not a problem when she kept laying on the dog or pulling the little kids hair or when we all had to chase her fifty times when she headed for the stairs. I do believe we cut our vacation a couple of days short because of the inconvenience of not being at home and just letting her run. But all in all it was fun. The car ride home was, We left at 3 am on tuesday morning and pulled into Boseman, Montana at 8pm on tuesday evening and got a room for the night at one of the only places left with any rooms and it was nice, two queen size beds and 35 channels, and room service to boot. Then we got up and left at 9am and got home around 11pm on wednesday evening. Very glad to be home. Coralynn handed me wind up toys and inflatables the whole car ride there and back. I almost threw a few of them out the window. Hope this helps anyone at all. Oh, did I forget to mention that at home and on vacation Coralynn will sleep nowhere except with me. She won't even allow me and my husband to sit on the same couch without coming over and sitting in between us and making sure I am looking at her. Hope this isn't too long. See Ya. Corinne (Mom to Coralynn 51/2 yrs. AS)

Subject: Re: Vacation

Corinne- I had to laugh at your letter! We can relate! Travelling can be difficult... the stable, routine home environment makes life a lot easier with an angel... and when you take them out of that environment it can be difficult!

.... Yes, the handing toys back and forth endlessly!... Yes, trying to always be in the middle of mom and dad!! ("center of attention"!!) But, I must say that our child (Whitney, age 15) does travel in the car well!! She loves to ride and doesn't miss a thing... a back seat driver!!

Thanks for the note! We've had a diagnosis for four years, but it is still great to know we're not alone... all these odd behaviors are tolerated by lots of families!!

Alice

Subject: Vacation

Hello again,

Back from a 4-week vacation, I was stunned by the 500+ (!?) messages I found in my mailbox. I didn´t even know that it had the capacity to store such a volume ! Believe it or not, I've read it all by now. You must be having a very rainy summer over there (as we do over here, though now that I am back and working, of course, it looks much brighter !) and/or some of the "hidden subculture" (private correspondence) has become public after all...

I was delighted to see so many new subscribers to this list, and I think I should reintroduce my family to you. I am father to Liisa (6, del-), and her mother's name is Hilkka. Liisa also has a sister, Annina (9). We live in Joensuu, Finland, in the eastern part of the country about 100 km (60 miles) from the Russian border. I am actively involved in plans to get AS families - there are about 40-50 of us in a population of just over 5 million - more organized and informed in this country. I am also coming to the Calgary conference next month. As a subscriber to this listserv for 6 months now, I can already describe myself as a relatively well-informed AS parent !

Liisa has what I would call milder AS (e.g., no epilepsy, early ambulation, plenty of signs, milder sleeping disorder), and in general she seems to be higher functioning than most AS children. This is probably due to her having an imprinting mutation, which, however, still remains to be established in more advanced genetic tests. You will notice this when I tell about her various skills in forthcoming letters, and you should not necessarily conclude that we have reached another "success story" by educating her in some ingenious way.

To Sally Shannon and all others who have discussed vacations, I might offer a few observations. First of all, I think it is self-evident that we, as AS parents, need breaks much more than other parents. Whether you go for a vacation with or without your AS child is really a matter of the severity of her/his symptoms. For instance, if you cannot have proper sleep in new places, you wouldn't really enjoy it much. But also, I would advise you to try to get your child accustomed to stay in relatives' homes, hotels, log cabins, tents and so on - she/he may only need some positive experiences before she/he sleeps just like at home, or perhaps even better if allowed to lay just next to you.

Each summer, I take one week off, isolating myself on a small island where my parents have a summer cottage - sleeping, reading, swimming, going to the sauna, fishing etc.. My wife does basically the same thing, but she stays at home while the rest of us travel. Of course, being responsible for Liisa around the clock for 7 days is quite demanding, but at least one of us can enjoy complete freedom in the meantime. It also allows me to get my mind more organized, even if (or just because) I can do many things I don't normally do.

Each summer, we have also taken Liisa for an extended period (3-4 weeks) to see friends and relatives, and to stay in our summer country house in the South (of Finland, that is). We could do many things with her, like going to a beach, amusement park, zoo etc. without any major problems other than the usual constant supervision and the occasional small incident. Maybe it was this wet summer when we couldn't have many of the usual outdoor activities, or also because Liisa has become much more difficult to handle on the backseat, that we felt for the first time that this was no real vacation. Or perhaps we could handle her better when she was younger and not so mobile and active. (We even went to Paris for 2 weeks to spend Cristmas and New Year with friends over there when she was 19 months old and could not yet walk.) Anyway, this summer it was often very hard to find meaningful things to do. A 2-day cruise on the Gulf of Finland was probably the best we had.

So, we are beginning to feel that we should spend a major part of the next vacation without Liisa, if respite care and summer camps are timed appropriately (they were not this time.) This summer, we also had the first relatives to offer to take care of Liisa for some time while we are vacationing, but we are not yet sure whether they really understand what they would have to go through. After six years now, this is what we think.

I just hope all of you can find respite care, summer camp or something so that you could have a proper vacation. Liisa is now at the "Howling Wolf's Inn" (a former border guard station) with 10 other children and 14 minders, and next week she'll be at a riding camp. I'm sure she'll enjoy these activities enormously. After all, she has the right to take part in such summer camps just as any "normal" child.

Take care,

Heikki Taimio

Subject: Vacations

To Beth and all the other vacationers-you will probably get this after your vacation but I was wondering how you manage to take a vacation with your AS child? We have only gone away for two nights-the car ride there was okay (it was only 4 hours) but the nights were hell! How do you get any sleep in a new environment? Our daughter was up until the wee hours and then she finally crashed-that was probably more due to the benadryl we ended up giving her. It wasn't much of a vacation on even less sleep then we get at home! Any ideas? We are very much interested in the Pennsylvania meetings but dread the thought of nights in a hotel room. What do others do ?

Thanks Sally Shannon

Subject: Re: Vacations

Sally,

Hi we have found with Melanie that if she can not see us she sleeps. So we usually put her playpen or crib behind a wall or somewhere she can not see us and we either go out of the room or we are just real quiet until she falls asleep. We went on a few over nights before we figured this out and we got no sleep. We had to figure out something because her nuero is a 3 hour drive and we make it an over night usually.

I hope this continues to work as she gets older!!

Lisa Koch

Subject: Re: vacations

Sally: I leave in 2 DAYS and it's way past my bedtime but I thought I'd get on and answer. We are going to my sisters and they just built a new house. She has a large walk in closet in the guest room so it's empty right now. We'll have Kailey sleep in there. I'll bring her pillow, blanket to make it "familiar". To keep the doors shut I may have to go out and buy a large spring curtain rod to put on the outside of the doors. We'll see. I suggested that once to an AS mom, she tried it and it keeps her son from being able to open his bi-fold closet doors. When we go to grandparents we remove everything from the room and bungy cord the doorknob to the next door doorknob. We take mini blinds down, everything. For hotels it's very difficult and we don't take vacations that way. In the past we used her car seat reclined (a very comfy carseat - Renolux) positioned in a corner so she couldn't tip. It worked but as she got older it made it more difficult being in the room with her, actually impossible. For our trip to Colorado when we stop overnight at a hotel we'll just get 2 double beds. I'll sleep with Kailey and leg lock her!!!!!! I figure I can get some sleep the next day in the car where Tom can't as he'll be driving. We tried tents before and thought we really landed something but she ended up rolling them after a few times. When I'd put the tent in a corner with a bed wedged next to it she'd climb on the bed tent and all!!!! If we ever have to sleep at my folks it's a night of hell because we can't empty any room so we plan overnighters only in emergency situations there. If I had to go on a vacation and stay in a hotel I would probably do a suite so she could be in her own room alone. Also when she was littler and we went to florida I put her in a closet to sleep with a chest of drawers in front of it so she could see out but not get out. I guess that may work still if it were a very tall and extremely heavy one with no place for Kailey to grasp her toes. We won't be taking Kailey to Canada for cost reasons but mainly for sleep reasons.....although I'd love to share Kailey with the other families I also want some good sleep so I can make the most of our time there. Julie: I'm so glad to hear about your sisters new plans.

Beth Sturr Kailey age 6 del. +

Subject: Re: vacations

We go to North Carolina every summer for a week. We rent a house on the beach and take a babysitter with us.

The beach is important because it is a place with very gentle surf and a gradual slope so that the water stays shallow for a great distance. This will not be popular with John in a few years, but for now it's fine. Because the surf is so unexciting and because there are no multiple residences around, our stretch of the beach is fairly deserted. Sara can play in the sand and water all day with minimal supervision. She likes to go out to the deep water with her dad (I'm chicken), and she likes to body-surf with her brother.

The house is important because it is pretty much like our house. It has enough bedrooms and bathrooms for everyone; a real kitchen w/microwave and dishwasher; washer and dryer; air conditioning; cable TV and VCR. We do not enjoy boardwalks or carnival rides, so the boredom factor is a plus for us. There is really nothing to do but enjoy the ocean and read. Sara has TV (we bring tapes with us) and the water. John and Jeff go for an occasional fishing expedition/round of miniature golf. I get to read two thick books. We eat a lot of fish. John reads and plays board games with us. The babysitter tans and watches Sara; she has the evenings after dinner off, so she can go someplace where young people drink and dance (I'm sure there is such a place though I've never seen it). I still get up with Sara at night, but I get to sleep late in the mornings. Jeff takes over Sara when he wakes up and is in charge of her until the sitter rises.

We did pay the sitter this year, but she did not expect to be paid. She viewed it as a vacation for herself that she wouldn't have been able to afford otherwise.

This is a very restful time for us. We can afford only a week, but we all look forward to it all year. The drive down is horrible (12 hrs., and we tried stopping at a motel--worse than driving straight through), but everything else is wonderful.

The house we rent is very expensive, but it is right on the ocean. There are many other single houses for rent at southern beaches which are more reasonable and maybe just across the street from the ocean. I think having our own house for that week is a major part of the relaxation it affords us, and the ocean there is just perfect for Sara.

Martha Sprowles (Sara, 10)

Subject: Re: vacations

Martha, We too take a yearly vacation down to the NC beaches each summer. It's the only way to restore my sanity!! Where do you all go? We love the Corolla/Whalehead area. We usually rent a large house and go down with one or two other families. Besides Taylor (AS), who's 4 1/2, I have a daughter 9 and a son 11. The other families all have kids the same ages. They all keep each other busy. There are also some early teen girls who LOVE to take care of Taylor. The first year we went, I didn't feed or change her for the first 4 days!! There was a waiting list to take care of her. The only worry we have each day is to try and keep Taylor's sand consumption down to under a pound a day. This past year was extremely stressful - my husband was diagnosed with testicular cancer in February. He went through surgery and severe chemotherapy up until the week before we left for the beach. We told the MD about our trip and he said no problem with going, just take it easy! Not a problem down there. Having our beach week this year was a godsend. We had lots of R and R . We would recommend this type of vacation wholeheartedly!

Robbin

PS - When were you there this year - I remember seeing a child on the beach that looked like an "angel" and wanted to go up and say hi but the family disappeared before I had a chance.

Subject: Re: vacations

Dear Robbin,

We go to Oak Island, near Cape Fear. We stay at Toki Doki II, way up toward the end of the island. Are you anywhere near there? I shop for groceries at the Food Lion in town. Maybe you saw Sara there?

Martha (Sara, 10)

PS--Son John (13) wants to know when you go. We are there the last week of June.