Moms of kids with special needs

[bethben]

Have you stopped trying to do family vacations?  My dd is very flexible but requires a lot of accommodations with beds and bathrooms.  Right now, I’m at the laundromat cleaning his sleeping bag because he’s incontinent.  He has the sleeping bag because he throws off covers.  The toilet was not to his level of comfort so we had to use a different one outside of the room. Basically, DH was ready to give up yesterday and go home right after we arrived.  It was a three hour drive here and we are done.  We want to give up trying to do family vacations.  It’s too exhausting.

[chiguirre]

We only go to the beach. We can't do much else with GW because he makes too much noise and can't wait in line. Even at the beach, we have to establish a routine and stick to it. We can only eat at restaurants that will have something GW will eat (this isn't too challenging, he does chicken, burgers, quesadillas, pizza, pasta but forget hole in the wall places with quirky menus). We only go to movies at off times and late in the run of a movie so there won't be many people and we can sit off by ourselves. We've mainly adapted but our vacations tend to be boring for Geezle and Trinqueta.

[Crimson Wife]

My child is high functioning enough that we can treat her like her age equivalent (which is quite a bit younger than her chronological age). But for families whose children have more severe challenges, I would suggest looking for SN family retreats. We went last summer to a camp run by a local foundation that seemed like it did a great job accommodating a wide variety of different issues.

[Jean in Newcastle]

I haven’t been on vacation in years. Not all of us have the funds for that. 

[Hilltopmom]

We stopped going. It was too much, everyone else had a bad time, and it usually resulted in a medical emergency.

Once my kiddo had nursing care, we tried a few overnights away but a good nurse was too hard to find and we stopped that too.

our vacations were always very inexpensive family camp or split a cabin type ones.

[Robin M]

James is high functioning, but can't stand airplanes, waiting in line, and likes to keep to a routine. So when we go on vacation we rent a place for a week  so we don't have to be on anyone else schedule, cook what we want to eat, and a place to regroup when feeling stressed.  We hang out, go to area attractions once or twice, then spend the rest of the time hiking and reading.   We usually go to the beach or a lake, someplace beautiful where we don't mind being lazy and enjoying the scenery.  We avoid big family functions and traveling on holidays and arrange to see family during the year separately rather than big group things. 

[PeterPan]

I take all ds' waterproof bedding when I go, with fresh bed pads for every day, a 2nd bed pad layer, AND foil to make SURE the bed is covered and not damaged. Yeah, he's rough in lines, so we pick times that are lower, get passes to not have to wait in line as long (Disney), etc. 

I think the trouble is it's not really a vacation if you have to take along work, and a dc with significant SN is work. My ds is finally to where I think I could leave him for 2 days with someone, I think. I was telling dh I'd like to go on a cruise. I've never been on one and I'd just like to go. But no, if I take ds along, that's work, not a vacation.

One time I got us a condo that had laundry in the unit. That was AWESOME, so much more convenient. You may need to draw the line on what you'll do. Fwiw, at certain times of the year, you can get houses and condos in Orlando for a pittance. Just go, sit in one, enjoy the sun, swim in the pool and hot tub. Like I think we paid $80 a day for a gaited community, 3 bedrooms, hot tub and pool right outside the door. We had tix to Disney and wondered why we were even bothering it was so lovely, lol. And if you have space like that, you can take along someone who is there just to do respite care for your ds too. The 3 bedroom condo we were in had 2 queens, 2 twins, a king, and probably even a sleeper sofa. For real. So it was just 3 of us that trip, but we easily could have taken along a care giver. And tix can be $69 sometimes. Just uber instead of car rental. 

We fly Southwest almost exclusively now, because they make it easy with SN. Like I said my ds is wicked in lines. He also gets anxious about things and needs extra stuff like earmuffs on the plane, etc. So with Southwest we get to check 2 bags free (helpful since we're carrying bedpads, etc.), and we can pay a small Earlybird fee and get early checkin and a numbered place in line. I just flew a week ago and got front row on all 3 flights doing that. Seriously. No stress, just walk up, get on, get seated. 

The key I think is not to have expectations and to have high support. If other people have expectations, then make it so there can be separate plans. And if you want it to be restful for you, then arrange days when someone else is assigned. 

There are cruises that do autism. I don't know what else they do, but the company handles autism. If I cruise with my ds and dh and actually want to do things with my dh, I'll probably go with that type of cruise. Otherwise, I would just be on all the time and get no break. I can do that if it's just me and ds, because we have a sort of rhythm. It's when you have other people along and they have expectations and want your attention too that it gets hairy. You can't be all things to all people, and then you don't get a break.

We also have what's important to us. Like me, I really want a hot tub. Ds likes it, I like it, and I want there to be a hot tub. Maybe there's something like that that makes up for the rest of the day being hard, kwim? 

Oh wow, I just looked at the ages. Can you rotate through the kids or just leave the 18 yo? It has nothing to do with not loving him or wanting him along. It's just he's over 18. I told my dd that this year, sorry, but ds is going to get things that you won't or didn't. And maybe like rotate it or plan a week for him that is sort of adult/stellar with a respite caregiver. Like maybe he goes to the respite house and he eats pizza every night and watches movies and plays PS4 or whatever he likes to do. And maybe sometimes take just *1* of your kids if taking 4 plus the dh doens't work. I dno't know. 

Sorry it's hard. Hopefully they'll buy you dinner and smooth it over.

[6wildhorses]

When we travel we usually rent a house instead of staying in a hotel room. I always make sure we have a washer and dryer. Staying in a house is much more comfortable for us than being in a small hotel room.

That said, traveling is exhausting. It's a lot of work. I have to be really mindful of what I plan, both from a safety viewpoint and a practical one. Some things just can't be done as a whole family. I generally plan 3 day/2 night trips, and I plan activities that everyone can do.

When I was growing up, my mom planned trips that were packed with sightseeing destinations that kept us busy all day. It was great, but there's no way my family could keep up with a packed schedule. We have a different pace, and that's okay.

[Crimson Wife]

1 hour ago, Jean in Newcastle said:

I haven’t been on vacation in years. Not all of us have the funds for that. 

The camp I mentioned was $50/person last year for a week and this year I guess they did well enough with fundraising that it's totally free. We're not going because I'd be 28 weeks pregnant by the time it started and I don't think I'd feel up to it.

But a lot of organizations that sponsor SN family retreats really try to keep the participation costs down since they understand the financial burdens of medical & therapy costs, equipment not covered by insurance like wheelchair van conversions, etc.

[Tap]

I stopped bothering to try. 

[rutamattatt]

We don't vacation as a family all that often anymore.  DD has ID and changes in routine or expectations increase her anxiety which then affects everyone else's enjoyment.  She is also sensitive to high or low temps and once she is tired or hungry it is over.  We have done the beach together, and that is about the best arrangement we have found because we can rent a place and call most of our own shots.

DH and I have started vacationing seperately to recharge.  I go with a friend to see musicals and he goes away with friends to a cabin for game nights.  We also try to do "date nights" locally with each kid because it is a little easier when we can stick closer to routine and safety of home.  I just took DD on an overnight trip (just she and I) and while we had fun, it is A LOT of work to be "on" the whole time and help manage her emotions and expectations.   We probably need to take our NT kids on a little mini vacation sometimes, but it is expensive and can cause stress for anyone left at home too.  

Vacationing is supposed to be relaxing, but often with a special needs child it is not.  

[Lecka]

We have gone on joint vacations with my sister’s family and my mom and step-dad.  We stay in a cabin and can eat in the cabin easily.  My step-dad stays with my son most of the time so he can have his toys from home and watch movies he likes.  

[AimeeM]

We have three kiddos with a variety of special needs. Two of the three have medical special needs, and two of the three (a different variation of 2 / 3, lol) are ASD -- one of the ASD kiddos is moderate (level 2) and the other more severely affected (mixed levels 2 and 3). Our youngest (more severe on the severe end of the spectrum) is very, very rigid. However, he loves vacations. We've always made it a point to talk to him frequently (and constantly) prior to a vacation about how things are going to be different wherever it is we are going (and we get specific about what will be different, when needed). I'm sure you've already considered that. 

The biggest issue for us is the car ride getting to the destination. Neither of our younger boys are fans of car rides. 

I hope they continue to enjoy vacations, but time will tell. It can be exhausting for me, definitely, because I always feel like I need to lug around a suitcase when we're out and about and far from the house. Even though we finally have everybody potty trained, there are accidents to consider, noise-cancelling headphones, safety harnesses, a stroller, and our youngest's must-have-everywhere item -- a sketchpad and a yellow papermate pencil (and a mini sketchpad will NOT work). But, we try to make it work.

The kiddos are 16, 9, and 6, btw. Surprisingly, Universal was a huge hit and we didn't have any major issues. We stayed at a themed hotel/resort affiliated with Universal -- they had easy shuttle service to the park, and in the hotel they had a restaurant (with a variety of foods), a Starbucks, a pool, and an arcade, so even if we felt like staying in and away from the park for a day, we had things to do. And the kids all did great at the park, too. There were a couple times we had to utilize the stroller and headphones, but otherwise it was good. My caveat here is that my sister and her family live near the park and joined us for several days, so she would take our teenager to do things with her if our boys needed a break. And her husband is great with both our SN boys, and would take them to the arcade in the hotel so that I could regroup. 

We've done a couple other vacations, but otherwise, we "vacationed" at my FIL's (before he passed away) when we'd go to his house a couple times every year. Really we were visiting and caring for him, but he lives right outside a major city so there was plenty to do, and the perk was that our kids considered his house a "second home," so they had their own routines there already. 

[scholastica]

You and your dh need some respite, both as a couple, and individually. If you can do that, you will have the energy to deal with the stress that comes with even the best of vacations. Prayers and hugs. It’s all hard.

[SKL]

I would research places that are designed for families with special needs members.  Good luck!

I understand why you would want to stop it though.  Hopefully someday you will be in a situation where you can occasionally travel with or without the person who is hard to accommodate.

[KungFuPanda]

Our challenge is finding a place that’s accessible (roll in shower) and allows family pets. We have a dog who is just a pet; not a service animal. We haven’t even attempted to fly. I don’t even understand how that would work with a power wheelchair. How do you transfer to a seat if you can’t take equipment in the plane and WHY don’t they just have a flip-up seat and a latch system so the passenger can stay in his chair?

Luckily there’s a ton of daytrips where we live and we can usually find a dog sitter for overnights. Dh really is happier and more independent at home because it’s set up how he likes it. He just completed his last year of summer camp. I’m really going to miss that. 

[Ali in OR]

Dd likes vacations, and while they have challenges, we find them worth the extra effort. In the last year or so though, we have taken a few quick trips without her. This works now because she is over 18 and has state funding that pays for care and we have a caregiver we absolutely trust. Dd loves her caregiver and we know she considers it a special treat to be with her--she won't realize that she's missing anything.

[Ottakee]

I just got back from a trip worth my 3 who are all mild to moderately cognitively impaired (along with some anxiety issues and spectrum stuff) and the boyfriend of one of mine who is also cognitively impaired.   It was a trip NOT a vacation for me.

For the most part they did well but the first day was ROUGH as we crossed the border into Canada, visited a few hours and then crossed again.   That was very anxiety producing.

I paid extra for a 2 room suite with 2 bathrooms, 2 TVs, etc.   I also let each kid pick one must do/see/eat thing on the trip and then I filled in the rest.

I did not count it as a vacation, esp since I am single parenting it.   My vacation day comes next week or later this summer when I get a night away at my friend's boat house on a lake.....all by myself.

[Pen]

stay cations ?

[Pen]

About 10 years ago we visited a friend who lived in the next county south for an overnight a couple of times if that counts. Friend’s own child also had special needs and so they were very understanding. It’s not just special needs of child, but my own major limitations. Especially now as child bed wetting and night terrors have ended and anxiety has decreased, it is more because of me. 

[LucyStoner]

Car camping and low key things only.   For my son who wasn’t consistently dry at night, camping was the time we pulled out the pull-ups.  Nothing with a big itinerary. 

[sassenach]

It definitely limits us. In recent history we’ve stuck to rental homes within 1/2 a day’s drive. Currently, I don’t think he could handle more than a 2 hour drive. Thankfully, our usual summer place (6 hour drive) didn’t work out, otherwise I think we’d be canceling. 

We don’t camp (something I’ve mourned). We don’t fly anymore. We can’t hike together as a family. We can’t do day trips anywhere because he’s limited to about 3-4 hour outings. 

You have my complete empathy from me. 

[Teaching3bears]

Last time we went away for the weekend our oldest was great during the day but went into the hotel hall in the night, nude, screaming and stomping his feet.  Several guests phoned the front desk because they were scared and a security guard came.  He was understanding.  I don't think people should have to be so understanding.  I'd rather my son was cured.  His behaviour at home is the same and sometimes worse.

A couple of months before we went away for about 2 weeks, mostly hiking and I don't remember anything bad.  We do have to bring mattress protectors but they often get crumpled and the bed gets wet and there are wet pj's same as at home.

In the past we have had trouble with airports and lines in airports and tantrums and throwing shoes etc. on airplanes.

I still like to travel.  Not for relaxation because that doesn't happen but for seeing new places.  My sons are teens and they need to see new things.  I feel stir-crazy without at least some travel.  I would love to go to Europe or somewhere further away.  Sigh.  

There is a family retreat near me.  It is funded but still very expensive, much more than a hotel. you have to stay in sparse camp cabins with steel bunk beds and no furnishings and bring your own sheets.  I don't think the bunk beds would work for us.  Also, it's not seeing new places, it's staying in one place.

 

[Teaching3bears]

Also, I can't go anywhere on my own.  I do not feel I could leave them safely with DH and he would be able to handle things.

[Momto6inIN]

17 hours ago, Lecka said:

We have gone on joint vacations with my sister’s family and my mom and step-dad.  We stay in a cabin and can eat in the cabin easily.  My step-dad stays with my son most of the time so he can have his toys from home and watch movies he likes.  

I don't have any children with special needs, but I read this and it just struck me as so, so, so sweet that I had to comment ❤️

[Laurie]

20 hours ago, Tap said:

I stopped bothering to try. 

Me too.  

I absolutely hate this time of year.  People try to make conversation by asking if you're taking any vacations, and when you say no they often look at you with utter disbelief and then start prying.  I wish people would mind their own business or at least just let it go when someone says no.  

I'm actually looking forward to July when my neighbors (the ones with the very smoky charcoal barbecue)  travel to their family summer place for awhile and I won't have to make sure all our windows are closed around dinnertime.   When they're home, they barbecue pretty much every night in the summer, and sometimes they have a meat smoker going for hours during the day.  I'm thankful that they travel even if I don't!

[Tap]

3 hours ago, Laurie said:

Me too.  

I absolutely hate this time of year.  People try to make conversation by asking if you're taking any vacations, and when you say no they often look at you with utter disbelief and then start prying.  I wish people would mind their own business or at least just let it go when someone says no.  

I'm actually looking forward to July when my neighbors (the ones with the very smoky charcoal barbecue)  travel to their family summer place for awhile and I won't have to make sure all our windows are closed around dinnertime.   When they're home, they barbecue pretty much every night in the summer, and sometimes they have a meat smoker going for hours during the day.  I'm thankful that they travel even if I don't!

I have 5 weeks paid vacation from my job a year. I take all of them as stay-cations. I work on my house and have a few down days. When you stay home all the time, it is hard to not have a 'very-lived-in-house' (clean but cluttery in my case), and I use my vacations to get it cleaned back up.  When you spend most of your time at home, it is *almost like having a vacation to have the house a bit cleaner and a few projects done ( not really, but we will say its it true LOL). 

My two best friends have household incomes that are $100,000 higher than mine. Not kidding. My closest co-worker friend is $50,000 higher and no kids. They go out of the country and just take random weekend get-aways to Mexico or Hawaii. Sometimes it is hard to not be jealous, but I know life isn't always fair, so I just try to focus on what I have and be thankful (and try to not cry LOL). 

 

So, yeah! I get the vacation question blues too.

[hippiemamato3]

We no longer bring our SN 18 year old on vacations. He ruined many expensive vacations before we decided it wasn't fair to everyone else in the family. Everyone is much happier on trips now, and we desperately need the breaks. 

[TravelingChris]

My youngest needs planning for vacations due to allergies.  Mexican, Thai, seafood restaurants are all out.  We have called hotels before and told them not to use any scented cleaners in her room.  That was after several trips that were fine and then when we were going to my FIL's funeral. dd got anaphalaxis at the hotel and needed an ambulance and that whole ordeal of finding where they had taken her, etc.  

On our recent trip, on one of the legs going to our destination, there was a SN child in the airplane.  Nobody complained or made any kind of fuss even though the child screamed a few times and made odd noises at other times.  So I think reactions are getting better by the public than they were 30 years ago.

[bethben]

So, we just got back---apparently, 4 out of 6 of us had either altitude sickness (we hike at that altitude often so I'm not so sure this was it) or just have sensitive stomachs due to junky food that you tend to eat on vacation.  We've decided to not purposely do a family vacation again.  It's too much work.  It's not just my oldest ds with the disability, it's also my daughter who is high energy/ high intensity.  If most of us hadn't gotten sick, I think it would have worked out OK, but that didn't happen.  We're going to take a kid at a time on a adventure for a long weekend - one kid a year at this point.  We've also decided to make purposeful day trips to someplace cool and plan them out better.  We have a lot of options within a two hour drive. My disabled son is pretty easy going - he just requires physical care mostly.  He's easily entertained.  A ride in an elevator is fun to him.  But, with all of them - nope.