5 Ways to Make the Holidays More Enjoyable For Your Prader-Willi Syndrome Family

The holidays can be a stressful time for everyone but for a family with a child with Prader-Willi Syndrome it can be extremely challenging. Time off from school, anticipation of presents, decorations, the hustle and bustle at stores, and all of the extra food and treats that go along with this time of the year can be absolutely overwhelming! There are things though that can be done to help life go on as calm and peaceful as possible. Of course what works for my family and I might be different than another family but I would like to share some things that we have discovered over the years.

1. Routine- Our children do not go to "school" as we homeschool but I have learned that time off, beyond a few days, only results in behaviors and anxiety. When a child with PWS gets bored...bad things happen, LOL. (laughing but NOT as it is the honest truth!) This is why for the most part we homeschool year around. We do take July off and a few days here and there throughout the year but keeping a routine going has only proved to be beneficial. Whether it is a first grade online curriculum (or whatever grade you child is at), learning games on an iPad, puzzles, workbooks, or even work boxes. (do a search for workboxes on Pinterest for lots of neat ideas!) We also have both children keep up with their daily chores such as taking care of our many critters, doing their own laundry, and helping around the house.

2. Food- Yes....the F word. I try and keep up with eating the same type of diet we normally eat. I usually only make a couple of desserts for Thanksgiving (easier to pick from two than say....6 choices) and he gets one piece that day and one the next. During Christmas we normally make small batches of a couple of kinds of cookies. For both Christmas and Thanksgiving meals we keep the food very basic. When I was growing up the counters in the kitchen were covered with every holiday food imaginable! This is just not a good idea for someone with PWS. Truthfully all that food is overstimulating for even me!  We will have ham or turkey, some type of potato, dressing, a couple cooked vegetables and always a tray full of raw vegetables. Often I prepare A~man's plate (I do not let him do it himself but he gives me input in what he would like) in the kitchen. (we do not place the serving bowls on the table) It helps to start with the raw veggies as they take up a lot of room on his plate and then add the other food. The only seconds he ever gets is a few more raw veggies. That sounds kind of strict but that is the way we have always done it so there are very rarely any complaints. After eating we try to put the food away as soon as we can as having it sitting can really cause him to feel anxious. He will actually remind us to put the food up if we do not right away.

3. Exercise- We walk daily (3-5 miles) and we especially try and keep up with it this time of year. Just this week though it has gotten bitterly cold so we plan our big walks for the days over 50 degrees...and on the other days we go walk at the mall. A~man LOVES to walk at the mall as it also gives him the opportunity to people watch. Our mall is never really busy but if it was it is also open before the stores are so people can walk in the winter. Another idea is swimming. A couple of winters ago we took the kids to an indoor pool and they swam laps (which they actually love) and played 4-5 times a week. We also have a treadmill which our son doesn't mind but we only have him use it if we cannot do any of the other options.

4. Activities- We keep things pretty simple with presents and make a lot of them ourselves. Shopping can be hard for our son as he gets so excited to be getting something for other people AND he sees so many things that he wants. Hubby and I normally take him out once each so he can buy a present for each of us but most of the shopping I do is online. I'm not a big fan of crowds myself.

There are a lot of extra fun activities that happen this time of year. We try to limit it to one a week and what works for our son...is to only tell him the night before if we are going the next day. I know some people do well with calendars with the events happening over the month but this only causes our son to obsess, repeat what's happening, and get anxious about it. Of course telling him the night before doesn't always work as he has eagle ears and sometimes figures it out before hand. ;)

5. Last but certainly not least we talk about why our family celebrates Christmas. We have lots of books and videos that make this time of year very special for all of us. I'll share more on that later.

I'm hoping to do another post when I think of more things that work for us but I would love to hear what works for other peoples families during the holidays!

Pity Party for One

It's my party and I can cry if I want to. Why? It's not something new that I have realized, but even after you have thought that you have come to peace with something...the scab is torn off so to speak and quite frankly it hurts! A~man has come so far in his 14 years, much farther than we could have ever imagined. But sometimes I get reminded that things are not "normal". (what is normal anyway?) What am I babbling about?

Sometimes it is hard to hear of teen social events and realize that this is not something A~man would be welcomed to...by other peers. (and maybe not even their parents) Does he notice that he has never been invited to a birthday party of a peer since he was a toddler? (well...unless it was a party that Z~girl was invited to) No, he has not. In fact he has never been invited to play unless it was initially an invitation for his sister and he was included in the invite.(which I have to say was kind to do...not belittling it!) Oops, with the exception of going to the movies with his friend that is a girl last summer!! Do I notice when teen events are happening and he would not be on someone's mind to invite? YES, and it hurts a mamas heart enough for him and I. This isn't really homeschool related as I'm guessing the same would be true if he was in regular school learning math and the properties of matter, rather than at home learning.

This summer Z~girl will be a teen. (Lord help me, seriously!!! not about boys but the rollercoaster of moods is already taking its toll on me) I have no doubt she will not have a problem getting invites and finding opportunities to "socialize". The ironic thing being A~man is the one who craves being around other people and Z~girl is like her mama and values her solitary time even more so than being with friends. Don't get me wrong, both of us like hanging out with friends, but A~man craves being around people he can talk to. (he needs to work on the listening part of having friends)

I will say the peers we are around are for the most part typically  polite, patient, and kind to him (I suspect they have noticed my mama bear claws??) ...but also with a look of "when is this kid going to stop talking so I can get away from him?" thrown in. Still, he doesn't notice, I do. Maybe that is a blessing in disguise for him?

I guess it is just something that I need to get over as I am the one it bothers, and the one that is hurt by it. 

In brighter news A~man is on a special needs basketball team! He LOVES this even though he is REALLY unfamiliar with how it is played. My boy would be content to walk around talking to every single person in the gym. LOVE my boy! When he was younger he went to day-camp with a lot of the people participating and also plays baseball with many of them. In fact, I noticed that one of his team mates was a boy he went to kindergarten with. He is well received by this group of peers...of course on occasion I still see the "when is this kid going to stop talking so I can get away from him?" look too, but I do understand as my ears are tired at the end of the day.

Still, I will go put another band-aid on my heart and be thankful the issue is mine and that for the most part A~man's heart is not the one hurting. 

PWS and Holidays

Although this time of year can be a fun and exciting time, for those with Prader-Willi Syndrome it can also be even more stressful. Thankfully our Thanksgiving went relatively smooth this year. Last year our son, who was then 13, crawled out his window in the wee hours of the morning and ran away. The whole story of his elopement can be found here. I would be lying if I didn't say that memory has been in the back of my mind for most of the month. Especially after hearing about a 19 year old who had PWS, that ran away recently and was hit by a vehicle.

We were fortunate to have my inlaws here on Wednesday so that is when we had our Thanksgiving meal. As far as food goes, the way my family does Thanksgiving (and Christmas) is a lot different than how we did it growing up. I come from a big family so we would normally have 20-30 people for dinner and there was a huge variety of food. Food was in dishes over every surface of the kitchen and much of it stayed out for hours. You just cannot do it that way with PWS. We keep things very simple. We have about 4 different dishes and a couple of desserts. We can never leave food out as it leaves too much temptation and causes too much anxiety. Even on normal days we do not sit at the table with extra food. We dish up our plates in the kitchen and bring it to the table. (okay I admit sometimes we all go downstairs and watch Netflix while we eat ;)

The major issue we are having right now is even more questions than normal. (and he asks a lot of questions normally) Even more so he asks about the next meal, the next snack, the next time he will get a dessert. With the cooler weather we are getting less exercise so despite the fact our son is slim...we are watching it more than we do when we can walk a few miles a day. Hopefully we can get back swimming soon.

We took last week off from doing schoolwork but will be jumping right back in to it tomorrow. I'm thinking about getting A~man into an art curriculum that Z~girl enjoyed a lot last year. I just signed both kids up for a homeschool matchbox exchange. (I've never heard of it before this week) Each month has a theme and you take a match box and decorate it and fill it with things having to do with the theme. This month the theme is "Famous Artist" so we are going to have all sorts of fun with THAT! I am always on the look out for activities to help out our right brain visual learner and throw some kinesthetic learning in there too! I will definitely be sharing the project in my blog so stay tuned.

worn out

It has not been a bad day. But I feel like that puppy up there. My daughter did her school today but my son with special needs did not. Not because he wouldn't but because we had so many things that HAD to be done today. He needs me right there beside him for most of his work, to keep him on track. One of those days that I am happy to say we got what we needed to, done. But school with son did not get done.

When everything was done we did decide to take the kids swimming. This has been something we have been doing over the last several months and sometimes we go almost every day. Sometimes I stay home and work, but today I made myself go. Swimming has been so good for both as it is something both of them are really good at! Also A~man has met up with a sweet girl close to his age that swims there on Mondays. She also has Prader-Willi Syndrome. It has also been nice being able to talk to the mom a few times. I have lots of online friends that are parents to children with PWS but rarely do I run into one in person.

Also, this past Sunday hubby took the kids to swim and one of A~man's teammates from special needs baseball was there. This young man is just a bit older than A~man and he has down syndrome. He is on a similar level to A~man (and likes to swim like him) and I guess they got along wonderfully! They swam laps together. OH, and he is a homeschooler too! I may need to go this next Sunday, I want to "recruit" them to our homeschool group. A~man needs some peer friends of his own.

I was glad I went today but I know the people at the desk probably think I'm the crankiest mom ever. By the time we leave swimming it's normally around 5 or 6...and I still have to make dinner. (although I will admit...hubby does sometimes too) When Z and I come out of the locker room, A~man is always standing chatting with the people that work there. Sometimes appropriate, oftentimes not. HAHA. Always though I am like "LET'S GO already!". 

They do not see the day that I have already had. Whether it has been a good day or a bad day, parenting a child with special needs is draining. No, I would not EVER change it but these people do not realize my son has talked non stop since he has woken up. Sometimes real stuff, sometimes questions over and over, or even just listening to him in the next room "talking" to himself. I hear talking all day long. I am a total introvert. I get my energy from what wee bit of alone time I get between 9pm- midnight. Yes, I really should just go to bed. But here I sit.

Worn out. 

Homeschool and Holidays?

What do other homeschoolers do during the holidays? We pretty much homeschool year round, except for taking a month off in the summer, and a day here and there throughout the year. I'm thinking about taking a break in December, BUT instead of just not doing school work....we will probably just do things differently. I have learned that completely taking off from school results in a loss of routine and a lot of boredom for both kids but especially A~man. He does not do well with complete downtime. With all of the excitement that goes along with this time of year I need something to distract him in particular. 

I would love to hear what other homeschoolers do! I do know that we will take a break from our online curriculum, plan some local seasonal activities like looking at Christmas lights, visiting a gingerbread house display, making some gifts and crafts, maybe go caroling, and go to some special church services. We will also make some cookies, although with the stress of PWS we limit that activity quite a bit. 

Meanwhile, I will go on a search for some unit studies or maybe even a lapbook to do over the next month. Does anyone know of any good ones about winter or Christmas that they would share with me? I might also make some flashcards to practice some spelling words over our break.

For now though, I will go decorate our tree!

Stealing

I curse (haha) the day I discovered the tab STATS. I must stay away. I have more looks than ever...but hardly any replies. Hopefully something I say helps, blesses, or makes someone laugh. Even you Goth people watching me....snicker.

It's been awhile since I posted about a Prader-willi syndrome issue and what do you know an issue popped up tonight. A~man is doing well with his drum lessons. I cannot say enough about the young man teaching him. So patient. On Thursday nights hubby takes A and Z to church and A~ gets lessons as the church band practices. Seriously my son loves music almost as much as his desire for food. (not joking) Meanwhile I get almost 3 hours of complete SILENCE. This is a novelty. I do some work online and clean house. I love this chunk of time.

On the way home hubby stopped at the store for a few things including flavored waters (the yummy calorie free ones with no sweeteners just natural flavoring) for the kids. On the way to the cash register hubby turns around to see A~ trying to stash gum into his pocket. This isn't the first time, won't be the last, but it rarely happens at a store. I'm grateful as shopping with A~ has always been pleasant...no more tantrums than the average child which I believe is not the norm for PWS. A year ago he pocketed a small toy at the toy store. We didn't discover it until we were home but we called the toy store (small/local) and told them NOT to be nice when we came to return it. It seemed so hard on the owner as they all LOVE A~ they have known him since he was wee. We buy a lot of our home school educational games there. We love this store. I was grateful though that in this case the lady was stern with him.

Stealing is just a part of PWS as hard as it is to write. Fortunately we do not have an issue with it often as hubby and I have both grown eyes in the back of our head. As far as a punishment he did not get the flavored water. When he got home and hubby told me I prayed with him before bed. I prayed for him and he prayed for God to forgive him (which God graciously does and He understands A~'s limitations) and to help him do his best. That is what we all should pray for right? For God to help us do our best.

~~~ for any lurkers (excluding any of my local/online friends although I would LOVE a comment from you too;) I would love to see a new person make a comment. Just to say "hey!" (as we say here in the south)

Oh and a picture for your viewing pleasure of the weather we have been having.

Raingutter Regatta = extreme anxiety for a mom with a child that has Prader-Willi syndrome

A~man has been in scouts for 3 years and is now finishing his Bear year. I will admit that I truly only do Boy Scouts so A~man can have social interaction with just boys (which is a challenge for him)...plus the leaders are awesome, accepting and inclusive. Also I love the activities they do which are SO what our family likes to do with it being nature and the big outdoors focussed.  Most parents...or so it seems...go 101% with their boys in scouts. Admittedly I do about 75%. I am hoping I can pull it together so he can complete what he needs to for the year. But on top of geography club,  drama club, Brownies, 4H, Z~girls running club, Z's soccer, A's occupational therapy and HOMESCHOOLING...I am doing the best that I can. So I am really praying about what I need to do as far as activities for next year. I am a homebody and haven't been spending as much time at home as I would like!

Tonight we participated in the Raingutter Regatta . We go to meetings and a couple other extra events but due to hubby's work or our busy schedules we do not go to the extra stuff. Infact I have avoided the Regatta like the freakin PLAGUE. Why?  The boat part I am fine with but when they are finished they fill up the raingutters (foil over the top) with ICECREAM and the kids eat out of it. Now I am not a germ freek so that is not the issue at all. But as a mom of a child with PWS it is emotional for me. A typical child may eat and eat all crazy like but y'know what? he WILL get full...or throw up. A child with PWS does not know this "full" they would eat and eat and eat.  I was feeling such anxiety about it and wondering if it would end with me dragging him to the car. But you know what? That did not happen. YES I let him eat more icecream than I would normally do but then I whispered in his ear "3 more bites" then you are finished. I underestimated my boy...he was just fine and walked away. He did brag about how much he ate but so did all the other kids. This gives me hope that maybe...just maybe as he grows older he will be able to walk away from food...or at least be redirected to something else.