How do we have "FUN?"

[MIAS_MOM]

So we saw our Pediatrician last week to get our records for our upcoming trip to Fl. when she looked at our sad, tierd, wornout expressions and said, "Do you ever TRY to have FUN?" OMG !!! FUN ???? How on earth do you do that when it blows up in your face? I recently took JUST my PANDAS daughter on a short trip ( cars are a big time phobia/panic/anxiety) with our horses ( love of our lives ) and we took a breath taking view trail ride on the mtn. top with one of my closest realitives as a backup support. It took over an hour to saddle up with my dd because OCD'ers have to go s t e p b y s t e p. We were finally off, she is now tierd just from getting ready and making sure everything is perfect, then has a full blown panic attack when she see's the "bluff" as we were already 30 mins out. Our horses walked back ALL BY THEMSELVES, and I had to hand lead my 10 yro old out of the mtn, thinking she would have a heartattack before we could get out. It never fails, anything I put together for her sake to TRY to have fun blows up into a crisis. Even outside yard adventures end up with her running into the house straight to the shower to wash or straight to her bed to climb under the covers and cry. So, How Do We Have Fun with PANDAS ? Because if there is a way, we need it more than ever now! Fun left our family over 2 yrs ago.

[dcmom]

I am so sorry Mia's Mom- I do know how you feel.

 

I think fun has to be simplified a bit when the kids are in an episode. We have always liked to take lots of day trips to museums and events- when pandas hit, we really stopped that.

 

Fun becomes things like: movie afternoon (cuddling on the sofa with popcorn and a movie), baking cupcakes together, painting (we did lots of painting- can be very therapeutic), short local nature walks to collect leaves, etc. crafts.

 

My number one priority has become to help them find some joy in the day- at the worst, the best we could do would be tv or quiet play on the sofa with stuffed animals, as they improve, we stretch a little bit, until things are back to normal.

 

You will be able to have these trips with your daughter again- but maybe now you could scale back to a short ride in the ring, or even just grooming the pony on a bad day.

 

My little on loves horses also (wish we had some) and it was about the only thing she would do outside the home during her worst times.

[MIAS_MOM]

thanks dcmom, its been such an "unhappy" time. We will continue to stick to "simple" for now. It just seems the world is spinning by on the outside and we are prisioners on the inside. I want her to get out so bad, I will try to bring it inside the best I can for now.

[smartyjones]

It never fails, anything I put together for her sake to TRY to have fun blows up into a crisis. Even outside yard adventures end up with her running into the house straight to the shower to wash or straight to her bed to climb under the covers and cry. So, How Do We Have Fun with PANDAS ? Because if there is a way, we need it more than ever now! Fun left our family over 2 yrs ago.

 

 

mia's mom -- yes, it's so very frustrating. it's so exhausting to try to do something with a huge backfire and then you are faced with doing nothing -- a no win situation for sure. did you see the post a while ago about ridiculous things said to pandas parents. i can't find it now but could try if you're interested. it may make you feel better b/c this question belongs there with the other statements, albeit with good intentions, but from people - often medical professionals - who just don't get it.

 

dcmom always has wonderful advice. she is one of my heroes in the pandas fight due to her compassion and understanding of her girls.

 

i am a huge fan of the techniques in the book The Explosive Child, specifically of repeating what the child is saying to calm a situation -- or at least keep it from exploding - but also for gleaning information that may be otherwise hard to get. are you familiar with the book? basically, you repeat what the child has said and after a few times, try to throw in a "why" or "what would you suggest?". the author has some videos on his website if you did a search under Explosive Child or 'collaborative problem solving'. you could suggest something you'd like to do to get her out. she says, "no, i don't want to go'. our natural inclination is then to convince and show why it's a good idea. with this plan, you'd simply repeat, "you don't want to go" -- at first, try it flat with no inflection or emotion. as you get more into it, you can do it with humor, being incredulous, etc. she, "no, i'm not going. " you - "you're not going?" if it stalls, "why?" she may then give you some info as to what troubles her with it and together you may be able to find a solution. it may help to bring some balance to your needs and desires for her and her needs/fears.

 

not related to this technique but some time ago, i was trying to explain the concept of "being in the zone" to my kids. ds9 said something like, "that's easy - anytime i'm on a baseball field". pandas ds6 (at the time not as healthy as now) said, "that's easy -- anytime i'm at home." i was really surprised to hear that from him but it made me think about his needs for safety and familiarity at that time.

[MIAS_MOM]

The Explosive Child has been one of my best books by far that has helped, I had my husband read it as well,

it gives us more "control" versus "explosions." Really opened my eyes to know what to do, when we didnt have a clue.

[laure]

I totally understand your experience. We have had same types with skiing, visiting friends, even vacations. The words "uncomfortable" are uttered at least a dozen times a day. We were a family who never watched TV. Movies that we rented, yes, but TV, no...no reception where we used to live, older siblings never got into it, so neither did the little one. Since this illness we watch more than ever before. She just needs down time to relax from all of the thoughts. A home schooling friend turned us onto some series that are great for the whole family, educational, etc. "Little House on the Prairie" and "The Waltons" You probably remember these.

Happy watching!

Laura

[MIAS_MOM]

That's interesting, we just started using netflix to have a stand by family movie ready for those needed downtimes. I too never encourage tv, but trying to adjust to the fact it is a needed time for the whole fam when we are all going at each other and stress levels are high.

[airial95]

During the bad times, we try to go simple too, but also to use the things that we know interest him. We were having a rough weekend this weekend, and Thomas the Train was in town (a ride on an engine that looks like him.) My son has a HUGE thing for all things Thomas, so we had considered going. However, since he had been having a bit of a rough time, instead we stayed home and did nothing but watch Thomas on TV and play with his trains in the living room. My non-PANDAS daughter wouldn't have called this too much fun, so we tried to do other things with her, allowing her more computer time than normal, letting her watch Netflix on my iPad in her room (which she just thought was the coolest thing ever!)

 

The weekend ended with a giant family snuggle fest on the couch. It was a weekend filled with more TV than we would've liked, but it worked. My son enjoyed himself, we got so see lots of his wonderful imagination as he was playing with the trains, and he even acted out some of his issues with them - putting one of the trains in time out because he "biffed" another train, sending one to his "special chair" because he needed to feel better.

 

What my husband and I try to remember is just because it's not something that we would identify as fun, doesn't mean that it's not the greatest thing in the world for him.

 

He loved it, we were saved some sanity, and he'll likely have memories of these silly weekends than of the big "fun" things we try to plan.

[MIAS_MOM]

During the bad times, we try to go simple too, but also to use the things that we know interest him. We were having a rough weekend this weekend, and Thomas the Train was in town (a ride on an engine that looks like him.) My son has a HUGE thing for all things Thomas, so we had considered going. However, since he had been having a bit of a rough time, instead we stayed home and did nothing but watch Thomas on TV and play with his trains in the living room. My non-PANDAS daughter wouldn't have called this too much fun, so we tried to do other things with her, allowing her more computer time than normal, letting her watch Netflix on my iPad in her room (which she just thought was the coolest thing ever!)

 

The weekend ended with a giant family snuggle fest on the couch. It was a weekend filled with more TV than we would've liked, but it worked. My son enjoyed himself, we got so see lots of his wonderful imagination as he was playing with the trains, and he even acted out some of his issues with them - putting one of the trains in time out because he "biffed" another train, sending one to his "special chair" because he needed to feel better.

 

What my husband and I try to remember is just because it's not something that we would identify as fun, doesn't mean that it's not the greatest thing in the world for him.

 

He loved it, we were saved some sanity, and he'll likely have memories of these silly weekends than of the big "fun" things we try to plan.

This is very touching. The hardest part for me is that I like to stay busy, sitting down for a period is tough, I would rather be doing, but I will work on it. Thanks for sharing.