It's been almost a year since I have blogged...

Phew! I just looked back and see that it has been almost a year since I have blogged. That's something considering I have been blogging since my duo were toddlers...12+ years! (I started out somewhere else)  The reasons I took a break are numerous, and some I won't mention, but I thought that considering I want to start back, that I would give a few reasons for my break.

I felt like I was talking to myself. This isn't a horrible thing considering I at times do it in real life but I do appreciate deeply the handful of people that consistently have commented over the years. I really cannot be too mad about it though because I have been guilty myself for reading but not commenting on blogs. I am going to change that though and hopefully spotlight once a month my favorite blogs/bloggers.

My daughter. I remember one initial reason I stopped was that my daughter read something I wrote online that described her as "shy". She does not like the word shy as to her it represents weakness. (I personally do not think being shy necessarily represents this) BUT I have been a lot more careful with what I put online about her. It is her right. This year she started mainly high school courses *gulp*. It has been a HUGE year of growth for both A~man and Z~girl. I have so many tales to tell! Up until now I have put the ups and downs of parenthood and homeschooling but she is now 14.5 and I will be more careful with my wording and what I write. I do feel like my break has caused me to miss out on writing a bunch of positives and challenges with homeschooling/parenting that I do not want to forget. I also hope some of my positives will give others inspiration or hope...and to let them know they are not alone.

Socialization. Yeah, the word most dreaded in the homeschool world. I will expand on this one in a separate post but as a whole I, as a mom have been trying to be more social. As a special needs mom this isn't always easy. As an introverted special needs mom it is even harder but I was seeing that I needed to make the effort. Add in the fact I'm a bit quirky and you will see I have been very brave this year. The prior few years I felt myself crawling into a shell due to a couple situations and for the most part, it has been extremely worth the effort this last year.

So this week I will be revamping my blog and hopefully posting a couple of times a week. My header pictures are almost 2 years old and need updated. I have so much to share! Here are some recent photos starting with A~man bringing me a flower he picked in the yard a couple of weeks ago.

To a foot of snow! Here is some graffiti our dog did with his initial. 

We had a whole lot of fun with the snow but I am so glad it is about melted!

Working From Home, Homeschooling, and Making it Work

Being a homeschooling, work from home mom has both its challenges and also its very unique perks. I honestly feel like I was handed my current job as a wonderful gift. It was a little over three years ago and I was out hiking with a friend and she presented me with an offer I absolutely could not refuse. It was to do some online marketing for a homeschool site that I was already familiar with, because it was the curriculum that we had been using even before my children's third grade online curriculum. I am able to work from home for Time4Learning AND I get to feed my passion for books by being an admin for Homeschoolliterature.com. To say I was ecstatic is an understatement. (years later I still am!)

A few years ago I was also blessed to do homeschool curriculum reviews for the Old Schoolhouse Magazine. We were able to try out all kinds of fabulous curriculum and I did not have to spend much money at all for a couple of years on our curriculum. I've never really posted about this in my own blog but both my husband I also dabble in Doterra essential oils. Yeah, we are oily people. ;)

Here are just a handful of benefits I have found being a homeschooling, work from home mom-

1. I can set my own hours

2. I'm already a homebody so this helps me to able to stay at home sweet home.

3. I do not need an extensive wardrobe.

4. If a child is sick I do not have to call in to work...I just adjust my schedule around my family's needs.

5. I get to spend lots of quality time with my family.

6. I can pick what hours my children work best at and work it into my own hours.

7. To some extent as long as I have access to a computer I can bring my work with me if we take a short trip.


Of course there is also the other side of the coin-

1. I have no insurance as I only work part time. This is probably one of my biggest stressors. Fortunately I am pretty healthy and I am currently not using any medications but paying for health care out of pocket when I do need it is not fun.

2. Sometimes too much family time, hahah! There are definitely times when all of us need a short period of time away from one another.

3. Not being able to leave work...in a building. What do I mean by this? I work from my computer and there are times I admit that I'm looking at work related stuff when I should be doing home/family things.

4. I do not need an extensive wardrobe BUT there are times I should probably dress up more. No, I do not wear my yoga pants everyday,haha, but I live in jeans and a t-shirt. I am now realizing that my daughter is picking up on this and it is hard to get her to wear anything else. Nothing wrong with wearing jeans and a t-shirt but it is fun to dress up every once in awhile.

This isn't for everyone but there are some key tips in making it work for my family-

I am not a real stickler for a schedule....it seems like every year I try to adhere to one but it never ends up working in the end. Yet still with the many activities we have- school work, athletic events and practices, field trips, music lessons and work, I do have a bit of a relaxed schedule.

Most every week day I carve out at least 2 hour chunks of time in the day to work. Tuesdays it is 10 am- 12 pm but most days it is 3 pm- 5 pm with an occasional midnight work hour thrown in as I am definitely a night owl.

Our 13 year old daughter is an early riser and ends up getting up before us and doing a majority of her work before we even wake up. (did I admit that?) She does a lot of interest led activities in the afternoon and also reads a lot. In the evenings either hubby or I will help her with her math program which is an area she needs extra help with. After that she practices her violin.

With our 15 year old son with Prader-Willi Syndrome and autism I supervise his computer work with about a 2 hour chunk of time either in the morning or before dinner depending on what part of the day I work. In the afternoon he has a short quiet time in his room followed by working on some self help skills. (I will admit here to my special needs friends...when my son has a quiet time I typically take a short nap....it is what it is!)

Also, most every day unless it is REALLY cold we will either go walking or hiking for 3-5 miles.

Housecleaning? Well I'm finally coming to the realization that my house is not going to look like the pictures I see in magazines. I am always working on de-cluttering but with having two teenagers now, I have a lot of help around the house. I try and keep the living room, dining room, and kitchen especially as neat as possible.

It also is very important and beneficial to connect with other homeschool moms who work from home. An awesome way to do that is through this linkedin group called Homeschooling and Working Parents. What better way to get advice than from other homeschool parents who work from home?

I can't tell you how much I appreciate a particular friend who on occasion will take Z~girl with her own daughter to swimming. We all went last time to the homeschool swimming but I think it is good for her to get away from us and also from her brother too on occasion. I hope to reciprocate that in the future!

I feel blessed as my hubby is often home too and able to watch the kids so I can go out to coffee with a friend, or a hike....this month I'm looking forward to going to a mom's cookie exchange!

The way I do things may seem hectic but that is what works for our family and that is the key, finding what works for your own individual family. Having a child with special needs demands flexibility in scheduling.

What are some things that I will be working on in the coming new year?

There is definitely room for improvement in how I do things though. The main thing I want to do after Christmas is find a better space to work at that is quieter as I am easily distracted. Of course this would mean an additional computer as a lot of the kids school work is done on the computer.

I want to prioritize going on a date with my husband at least once a month instead of once a year. Our daughter is about old enough to stay home alone but I know she wouldn't be comfortable doing so. Our son requires near constant supervision so finding someone to watch him is no simple task.

I really want to get back into doing some of the hobbies that I love but have not done in a long time like sewing and art. It's easy to put me time on a back burner but I need to change that.

Is working from home and homeschooling easy? No, but it is definitely doable and I am thankful that I am able to make it work for our family!

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!

Dear Waitress Who Growled At My Special Needs Son

Yesterday we had an unfortunate situation at a local restaurant that left us extremely upset. Here is my response to the rude behavior we witnessed. I did leave out the name of the person. ETA- I am going to name the restaurant as I would hate for someone to think it was a different place. Fortune Asian is the name of the restaurant this happened at. 

Dear Waitress Who Growled At My Son,

As you know we have been in the restaurant where you work many times over the last year or more. We enjoy the food and it is near our home, but with each time we have gone you have made it more obvious how much you do not like for us to choose your restaurant to dine in.

At first I thought you were having a bad day, very quiet, or maybe just had a lot going on in your life that would make you look with dread each time you seated us at a table. Yes, I did notice the eyerolls you would give us when we ordered too. Looking back I wonder what kept us going back except that the food was very consistently good and reasonably priced. I was a waitress years ago and I wanted to give you the benefit of the doubt which is why we kept returning. Yet, I still always hoped that someone else would wait on our table and every once in awhile someone else would. They were always courteous, polite, and made us feel welcome.

It has been over a month since we have dined there and we decided to return because our son wanted to go there. The look on your face when you saw us come in the door should have been enough. Yes, I noticed. My husband went to the restroom and my son tried to strike up a conversation with you. I heard it. You growled at him, gave him and I the stink eye and walked off. Initially I thought I was hearing things as why would an adult “growl”. I asked my daughter and she said that yes, you growled at her brother.

Once my husband returned to the table and I briefly explained your rudeness he agreed we should leave. On the way out the door I told you, “We will never come back here.” Your response? You smiled, shook your head and said, “okay”.

After talking with a couple of friends I still want to give you the benefit of the doubt as maybe you did not realize my son has special needs. Despite the fact that my son has always been polite and well behaved in your restaurant he does talk a lot. A LOT. He also asks a lot of questions and at times they are pretty off the wall. The question he asked you was not offensive and it wasn’t even really rude...it was just off the wall. He asked you if the other man working there was your son.

I know for a fact from other times dining there that your children often work there with you. He was not trying to be rude he was trying to strike up a conversation and he knew the one time he asked if the two children that were there were yours...you actually spoke to him.

I will be the first to say that my son can be challenging to be around. Maybe you should know though that he has autism and that he also has a disability called Prader-Willi Syndrome. Without going into too many unnecessary details a few of the ways these two challenges affect my son is with excessive talking, being socially appropriate, Obsessive Compulsive Disorder, and impulse control. (those are just a few of the many challenges he has to deal with daily, just a drop in the bucket) He tries so hard...and he has come a long way in his 14+ years.

One way that we try and teach our son is by bringing him out in the community and helping him learn how to act appropriately, and what is socially acceptable around people. With all honesty I can say he has never been a bother at the restaurant you work at except with sometimes being a little too loud and obviously by annoying you somehow.

I’ve explained my son’s challenges with his sometimes out of the ordinary behavior so you know why he is the way he is. I should also say that in any other restaurant we have been to in Hendersonville (and we have many favorites) he and our family have been treated with nothing but respect. In fact, he becomes a favorite of waitresses and customers, despite his many challenges he is the most charming person you will ever meet. Unfortunately, due to your rudeness (I would love to hear the excuse you have for your rudeness by the way) you will never get to know this. You are truly the one missing out on his pure and sweet awesomeness.

Did my son notice your rudeness? No. He did notice how upset his mama was after leaving your restaurant while I explained to my husband how you behaved. We were not mad at him for what he said but after he overheard what we were talking about the experience and kept saying, “I’m sorry!, I’m sorry!” He had nothing to be sorry for yet he stated to us “sometimes I feel stupid”. This is not something I have heard him say but a couple of times.

I came home and looked at your website to see who the managers or owners of the restaurant you worked at were as I wanted to contact them. What I discovered was that YOU are the owner. Shame on you! Good food does not make a restaurant...it needs equal amounts of kindness and being hospitable and you are sorely missing both of those traits.

I will be reviewing your restaurant at many different places including our blogs and Facebook. My husband and I will be passing this information along to many friends and families with special needs children. To growl at any child in your restaurant much less a child with special needs is pitiful. Fortunately there are many other restaurants in town that welcome our business and welcome our son.

~J~

PWS Weekend!

This weekend we were fortunate to be able to go to a mini Prader-Willi Syndrome conference. We have never been to one although we have been able to attend a few fund raising walks. It's so nice to get together with other families that "get it". Not all individuals with PWS are alike but being around other families that have gone through similar situations makes me feel less alone in this sometimes crazy little world I live it.

What is TRULY amazing is seeing the little ones under 5 years old. PWS has come a long way due to growth hormone and early intervention. A~man walked and talked  when he was around 3 1/2 years old but his speech at that time was only recognizable to hubby and I and he was very unsteady on his feet. He did start GH when he was two but at the time it was very unusual to start it at such a young age. Now,they are starting growth hormone as a very young infant. I was amazed to see a particular little guy that wasn't even 2 and he was walking very steady on his feet...no one would have guessed he had PWS.

We were able to have a short one on one session with Dr. Miller (pediatric endocrinologist specializing in PWS) which was very informative. Most of the advice she gave us had to do with improving some of his social skills. I didn't notice it before (how did I not?) but he really needs to work on his eye contact when he is conversing with someone. I think part of it was he was so distracted by what was going on around him. He also need to work on having  more reciprocal conversations. He tends to do most of the talking, LOL.

A~man met several new friends but he totally loves the little ones. One of his newest best buddies (as he said) is 7 and they had so much fun hanging out together. A~man even convinced him to come and see the
fire truck with him.

He even met a sweet girl that is close in age to him. He saw a picture of her on my Facebook and wanted to meet her but the first day we were there he stayed as far away from her as possible. Then when we weren't around her he talked about her non stop.LOL By the second day he had stopped playing hard to get and they were good friends. They have a lot of similarities to each other. I'm hoping to get him to write a letter to her. (he NEEDS to work on his writing)

Is she a cutie or what? 

We are pretty much done with school for the year except for a couple of things. I find it best that they both have something to occupy themselves or they will fight more than they already do. With both we plan on doing a "word of the day" thing to improve their regular vocabulary and reading vocabulary which reminds me! With the end of year testing A~man's progress is very gradual....like progressing just a few months at a time over a year. (and sometimes regressing) At times this has been depressing to me but it is what it is and I'm just happy that I can see him progressing and maturing in ways that cannot be measured by a test. BUT in oral expression, picture vocabulary to be exact, he progressed a couple of years! That totally blew me away even though I already knew he was pretty good at talking...now to get him to improve on the listening. 

Oh what a weekend....

Can I be honest with ya? I am tired...no, not tired, TIRED! Worn out! On average we have PWS issues pretty much on an even keel. That isn't to say we do not have daily issues but they are manageable. Sometimes when things are too calm...I get nervous and them WHAM, we get hit by the Prader-Willi Syndrome truck. It normally happens after things have just been going along way too well and uneventful. I'm not talking about a little issue but every few months it will hit us big time.

As my hubby said in a blog he did a couple of months ago, most of our son's issues center around impulse control. He doesn't...maybe he can't (at times) think of what a dangerous consequence some of his actions may cause. Yesterday he heard us talking about a little girl with PWS that was in the hospital because of ingesting something she shouldn't have and she was very sick. I think it scared him and he went into confession mode and brought us an empty bottle of medicine. We lock up medicine and a few weeks ago I went through the lock box and threw away expired medicine and medicine we no longer use. I put it quite a ways in the garbage with stuff on top but I think that is where he must have gotten it. His story kept changing. We tore his room apart looking for the pills and he ended up bringing most of them to us that he had in a baggy but we still called poison control. Fortunately it wasn't a dangerous med but one for reflux.

Last night things spiraled into a really horrible meltdown. He feels guilt of some sort after the fact. Not sure if it guilt that he did it or that he got caught.

If anyone out there might be thinking "gosh they do not watch their child very well". Literally except when he is asleep (and we have a hall alarm) one of us has our eyes on him....except when he is using the restroom but we know when he comes and goes. Even though my son seems so loud...always talking, when he wants to be quiet and sneaky he will find a way! 

After the storm of an event like this his behavior gets bad with continuous meltdowns. He is normally a very calm happy go lucky young man. He is truly the funniest person I have ever met. (and let me tell ya...my hubby is FUNNY!) Today I stood eye to eye with him (he's almost as tall as I am) and he looked so full of rage and anger that it scared me. (BTW it's best to give someone with PWS in a meltdown some physical space and time to cool down) I'm looking forward to things calming down around here. I've already done the mama guilt thing so I do not need anymore as I know that I do my very best.....but sometimes I lose my super-hero cape and things slide past me. Us special needs mamas (and daddies and siblings) have a lot to deal with, a lot. We learn from our mistakes and move on....

*~*~*~*~*

Found these cute photos on my camera that my bug and critter luvin' girl took. 

This week will be a busy one. Last week Z~girl started a theater camp and is LOVING it! They learned some skits and will be performing them at libraries around our county. It has been so good for her. Despite the fact that she is a introvert like I am she LOVES to be on stage. When she was much younger she was in several plays and loves playing her fiddle/violin for an audience. I cannot wait to see the performance.

She is in the middle of an online writing class (Time4Writing.com) and A~man is finishing up an online reading program. (ReadingKingdom.com) We will be keeping plenty busy with that so we may only have extra time for doing some reading and some educational songs for A~man. Next weekend we will be traveling for a day trip to go to our first PWS conference and I am very excited to meet some old friends and some new ones too that share our journey!

Look at the new peeps in our house!

We got the call Thursday that our new peeps had arrived at the post office. Chickens in the mail? Yep, we received the cutest fuzzy chicks from mypetchicken.com that Z~girl had ordered and paid for with her own money months ago. Let me say...she has been counting the days since she ordered them! It was overnight delivery and when we opened the box at the post office to check out the cheeping box I think it was the first time the peeps had really "seen" each other. They promptly began pecking each other. I remember when we got our other chickens last year Z and I being mortified that one of the chicks kept pecking all the other chicks in the eye. I guess if something moves chicks will peck at it!

I must add that normally you are not supposed to handle newborn chicks a lot and if you do you need to wash your hands well before and after. They also have to have some antibiotic drops in their water for the first little bit to make sure that they do not have any diseases. I took the opportunity to do some individual photos though as Z transferred them to their temporary "crib". Words cannot describe how cute they are and so fun to watch!

~*~*~*~*~*~*~*~

It seems like when the weather gets nice we automatically go into un-school mode...which is evidenced by our week of chicks and hiking. 

Sports are also back into the schedule of events which A~man loves for the social aspect and Z~girl loves for the sport itself. She is very competitive to say the least. 

A~man didn't get a whole lot of sit down work done this week. Not because of him but because of how the week went. Z~girl has a very driven personality and likes to get her school work done early. She has us wake her up at 6:50 am every morning so she can do her school work. (I can barely pry my eyes open at that time!) She did her school work every day except the day she did her volunteer work. (which I totally count as "school") 

I have to do a brag as the last year or so my duo do not get along very well most days...sadly. They used to be the best of friends but I am sure with the cognitive difference between them growing they are at completely different levels/interests. 

Later in the week I had been doing my online work, we ate lunch and I was about to help A~man do his school work including his vocabulary game that I had scheduled. Z said "How about I help him with his school work and you go take a nap?" I'm serious here folks, she said that. After I was able to get the stunned look off my face I decided -YES I am going to go take a nap!

They were just finishing up his school work when I got up from nap. They were getting along. Afterwards, she decided to take him outside (I haven't let him be outside without us alone since he ran away).They were out there for at least an hour watching the chickens and talking. (I was looking outside periodically) I so wish I would have taken a picture of that but instead I bottled up that wonderful memory in my head to remember on the days that aren't quite as wonderful between the two. Later, Z even said how much fun she had with A~man...the positive reinforcement from her went a long way for him. 

I am so completely blessed!

Yeah...this an instance in our life, and I do not mean a good one!

It's been an awful week and that is an understatement. Still not sure whether to share what precipitated it but I might soon...when I figure it out myself. It is no secret being a special needs parent is a challenge, but when other stuff gets piled in on top it can send a special needs child...and their family into a whirlwind.

I will share how this residual stress can affect (or is it effect?) a child with special needs even when they are not "aware" of why their mama and daddy are stressed. They feel it despite not understanding it. The typical sibling may understand part of it, be stressed by it and understandably aggravated by their special needs sibling's behavior.

This photo was actually taken a month before, there are blooms on the trees now, but I was in no mood to take photos this week.

It was a bright and sunny day today, a much needed reprieve from some rainy cold days, so we went for a hike at one of our favorite close hiking spots that happens to be a goat farm. It started off with A~man trying to find the goat that was grumpy with him last time. Honestly the very tame (and many were pregnant) goats must have sensed something as they made a bee line as far away from the A~man as they could get. I've never seen this as they are very docile goats.

Then he started reading one of their collars to figure out the name. He said "This one's name is Kawtee"...Z~corrected him and said nicely (well... the first time) no it is KATIE. This caused both of them to butt heads and A~man to spiral into a spot of no return. It escalated into "what's for lunch?" We had just eaten a big brunch. Then he started to scream and hit his dad.

Oh I should add this is also a beautiful location for photography and there was a sweet mama, her 3-4 year old little miss dressed up all fancy, and a photographer. Yep they, (and others) were right there to witness my 14 year old kicking his dad and swearing. (okay his swearing amounts to the word damn...shit....stuff like that but I still do not like it) My husband had to restrain him. ---disclaimer...we are trained yearly in this...I do not recommend anyone restraining someone...especially with Prader-willi syndrome, unless they are trained in how to do it appropriately. 

Me? Hubby whispers that I may need to go talk to the people. Yep. uh-huh. This will be fun. I turned around to go towards them and by gosh...maybe they were afraid of me?  I was like " m'am...excuse me" ( I do live in the "south" even though I am a transplant) with them walking rapidly away. By this time I am so embarrassed. Not by my son but I tend to be pretty quiet and reserved and approaching a stranger is NOT COMFORTABLE for me. Finally I stop and say- " My son has special needs and I just wanted to make sure you know we are not hurting him. He has Prader-willi syndrome and autism and is having a very difficult time right now. " I did catch them by surprise but they said something to the effect of "It's okay, we figured out he must be autistic".

I should note...I am not a crier. (well this week is an exception) I was crying when I said it, and sobbing as I walked away. *please tell me I will never see these people again* My poor Z~girl who knows I rarely cry asked me several times throughout the rest of the day- "Why did you cry mama?"

Meanwhile hubby was assisting A~man to a place away from people and was sitting on a rock...he was trying to calm himself down. (I'm talking about A~man...hubby was doing just fine...LOL) Both Z and I settled for awhile and I tried to distract A~man with the cat sunning itself just inside the barn as he LOVES that cat. Nope. A~man seemingly heard someone sneeze nearby and exclaimed...loudly- "Bless you....CREEP!!" I mouthed to hubby "WE NEED TO LEAVE QUICK", and that we did.

I should mention..this week is our spring break...I demand a DO OVER! Our good days/weeks far exceed the bad ones but I am absolutely exhausted, yet unable to sleep. Sometimes I am hesitant to tell others about our bad days but in doing so I hope I can show other parents of children with special needs that they are not alone. Seriously, you are NOT ALONE!

The Importance of Life Skills

 This is a post I shared awhile back over at Time4learning.com on the community forum but I thought it might be a good idea to show what other things we do in our homeschool in addition to the 3 R's and homeschool socialstudies!

Lets face it. Life skills are something that is important for everyone to learn. I personally think they are especially important though, for children who have special needs. I have a teenage son who has multiple special needs and I will admit, when he was younger it was sometimes much easier (and faster!) at times, to do too much for him. When he was younger we had numerous doctor and therapy appointments and spent a lot of our time in the car. Add in the fact that I was tired with two children close in age, so in order to make it to the appointments on time I just did a lot of it myself.

As the appointments decreased we had more time, and with the help of my son's physical and occupational therapist, I was on the way to helping my son become more independent. I will NEVER forget the day my son learned to tie his shoes! We were in our car on the way home from a weekend trip and I had both kids in the backseat practicing. (obviously my husband was driving) Amazingly, they both learned to tie their shoes on that trip. Now, there was some frustration at first as he could not do it the "typical way". So...I taught both of them to tie a bow using the bunny ears method and that is still how they do it! Sometimes skills must be modified specifically to your child's individual needs.

I guess the key is finding out what is reasonable to expect from them because having them get overly frustrated is a good way for them to completely shut down and not want to try. Talking to your child's occupational or physical therapist is a good way or talking to other parents of special needs children that have been through it before. So many big skills have little skills before them, that need to be achieved first.

My son will very likely need to have some degree of care for his entire life. This can at times be a daunting thought but a proactive way of dealing with it is to help him develop as much independence as possible. With all of our children, whether they have extra challenges or not, we want to assist them in achieving their own personal best. I believe that homeschooling is the ideal environment to help a child with extra needs do just that!

I found a great lifeskills chart on Pinterest that lists by age level different appropriate skills for a child to learn. As any special needs parent can tell you our kids do not necessarily learn these skills at the same time as a typically developing child. Still, it is a good list to tailor to your own child. Other skills might not be appropriate too. My son has Prader-Willi Syndrome and some of the food related skills have to be limited or highly supervised. I truly think you are an expert on your own child though, so as your child matures you will be able to determine what skills they need to learn to achieve their personal best.

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. 

Do Over Days

I originally posted this last year on my work blog at Time4Learning.com but I decided that on occasion I would post some of my favorites from the past over here. 

Have you heard of them? These types of homeschool days are something that over the years our family has implemented, especially when having to deal with special need issues.

 Particularly in the past when my son was much younger as he had great difficulty controlling his words and actions. Basically, he often would not think things through before doing something. When this happened repetitively, which was often the case, something had to change in the day.

My daughter too, especially when she was younger, has had to have a restart to her day when attitudes and words have gotten sassy.

But wait! I cannot forget myself. Years ago I had severe PMS issues that would cause my normally calm demeanor to be short tempered. Children are not the only ones that may need a restart to their day.

What did we do? Sometimes I would suggest we start our day over or one of the kids would say they needed a do over. A little bit of grace goes a long way in turning a terrible, horrible, not good day around. If there were days when we did not do this and instead muddled through, the day usually ended up being completely unproductive and quite honestly draining.

Typically we would go to a quiet place alone (the key) and either read quietly, play quietly, or take a short nap. After a certain amount of time we would come back together and if needed apologize and ask forgiveness. Usually hugging would be involved too. If it was a homeschool day I would try to pick a fun activity like reading a book to them, doing some art together, or exploring our yard to give the day a fresh and positive restart.

Do any of your homeschool days ever need a do over?

It Was a Yucky Day

It was a yucky day. Well...it was okay up until the middle of the afternoon when things spiraled down hill. Looking back I can always see how I could have prevented the day from a downward flush, but also I have learned that I am only human and there are going to be times I do not deal with situations perfectly.

We had Geography club today which I (and a couple of our other friends) did not remember about until two days before. The night before I could not sleep and felt like a slug for most of the day. It was a country we had studied before, Australia, and fortunately our family was only to present about notable inventions that came from Australia. But....two days is a lot to ask a typical child to prepare for, but a child with memory issues (sometimes I wonder if they are selective though ;) who ironic to his personality gets nervous speaking in front of a group, equals him being set up not to be very successful. Z~girl? She remarkably memorized what she was supposed to say with very little help from me. A~man? He got the deer in the headlights look that I am common for.

Anyway, I told him that he could have a cup of coffee later if he did as well at Geo club as he had been doing at home practicing. (*ducking* YES, I have been known to bribe him with coffee) He didn't. In the past we have told him he could have a cup of coffee (just a couple times a week) when we were done with a long walk...but looking back reinforcing him for being able to stand up in front of the group virtually unprepared was not fair.

I wasn't going to back down though as that would cause a whole new set of problems so I told him he could earn it back after his school work the next day. This didn't help.  Z~girl, and I were sitting in our redneck SUV (a whole nuther post) with a 14 year old A~man throwing a 3 year old tantrum while my hubby was in the bank. It wasn't purdy. I was so nervous someone would hear him and wonder what the ruckus was about. Before it got real ugly I sent Z~girl in to get hubby...thankfully so, as when she left he started throwing things...such as a tire pump. *note to self-clean out the car*

Once we got home he calmed down for a bit until after we were done eating dinner and then he got irritable again. I sent him upstairs and he remembered that he had lost his iPod that week...and started blaming hubby for its disappearance. We do not know what happened to it but it was not his daddy. Shortly after he went to bed, unhappy.

Days like this remind me that, days like this are not as common as they used to be. There was a time 3 or 4 years ago that he would have meltdowns a few times a week. Now it is just a couple of times a month. (well, the big ones) Something good about Prader-willi syndrome is that in the morning all will be right with the world too if I start the day out positively, which I will.

*~*~*~*~*~*~*~*~*~*

I do have some good news! After pestering my hubby for years to start blogging, as he loves to write, he has started to blog!! I encourage any of my blogging buddies to follow him as he will be posting about a lot of fun homeschooling things he does with A&Z!! 

TechDadz

I wish I could tell you...

....that our Christmas festivities have gone as smoothly as Thanksgiving's did. They have not. The excitement is doubled with having grandma and grandpa living nearby. (within 20 minutes!) I think we are fortunate as it is not exactly food related. It is schedule related, which I guess ties into meal times but it is beyond that.

With Prader-Willi Syndrome routine is very important. I try to keep to a concrete routine as much as I can but my brain doesn't work that way. I cannot plan out every minute of each day and definitely cannot plan it out for the week. That makes it sound like I do not have routine but for me it works like this- get dressed, breakfast, schoolwork, lunch, and quiet time. This all happens but not with an exact time. After we have a "quiet alone time" our schedule is looser to arrange for errands, interest led schoolwork, field trips, music lessons, and in the spring and fall, sports.

Without the holidays or special occasions like birthdays he seems to be okay with our schedule of events. When I have attempted to exactly plan out our week with him knowing every extra activity things tend to go badly. He will perseverate on the special events, which drives us all batty, and as we all know "things change". We have had vehicle issues the last 6 months so that has caused us to miss some events we would normally go to. We have had a lot of at home time which I do not mind, but A~man is more social than I am. ;) Plus, at times field trip dates change or have to be cancelled for various reasons.  I do see some progress in his thinking as I will say to him "things change" and he will repeat it to me and we are able to talk about the whys of how things change.

Consequently we have had a few REALLY big meltdowns in December. Like knocking my sliding laundry room door off it's track meltdowns. He hasn't been aggressive with us thankfully but we have had a few icky times. It does make me appreciate that this behavior isn't a norm for him anymore. It used to be for a few years. (and I was physically hurt a few times) Now? Once he calms down he feels remorse and apologizes. He has been doing this for a year when he gets out of control almost every time with absolutely no prompting. He asks for forgiveness which breaks my heart in two as I know he cannot help so much of it. What's a mom to do but freely give the grace needed plus a good supply of hugs for good measure?

Today my daughter asked if we had to do school work this week. *ahem* (in the past I say what days we have off during the holidays) I told her, when A~man was not within earshot that if she wanted to she could have the week off, but that A~man would be doing his work except for Christmas Eve and day. With his special needs and learning disabilities his day goes so much smoother if a part of his day is focused on homeschool help and as much routine as I am capable of. Now if it would only stop raining long enough for us to go see an awesome local light display!

Here are some photos I took today of A~man at his finest. Loving on our wonderful dog!

Totally rocking his pink PWS awareness shirt!!! (my boy LOVES pink :)

These gentle moments are ones I treasure!

Our children teach us grace and so much more...

Today I wrote a post over at Time4Learning about our day yesterday. It was NOT a good day. (I work for Time4Learning if you didn't already know ;) Here is the post about our day after Thanksgiving break.  Yep, I had a full blown mama tantrum, it was not pretty and I am not proud of it. I was the cause of most of our woes yesterday. No, I am not perfect and will never profess to be. Ever. What did I wake up to though today? A son who easily forgave me with smiles and hugs. (which on one hand makes me feel even more rotten...yet blessed at the same time)

I do want to tell you a story about a restaurant we go to. We have majorly decreased our eating out but when we go out to eat my son has a way of making himself known...in a good way. If you are old enough, did you ever watch the TV show Cheers?

We live in a wonderfully quaint smaller city, but honestly when we go out to eat at our favorite breakfast stops...this is how it is for A~man. Now...keep in mind in public I am pretty quiet and I am an introvert. Yes, I love people but deep down inside I prefer to go in a restaurant or coffee shop with my family or friends and have it be a quiet affair. It is never that way. I'm convinced it is never meant to be that way if my sweet boy is there. This is where the title of my blog comes in big. Who's Learning?Who's Teaching? My sweet son forces me to be more social even though at times it is uncomfortable for me. Somehow it seems so ironic.

Today we went to one our favorite places that is not far from our house. Well they LOVE the A~man there! One particular customer that goes there almost everyday has been obviously drawn to our quirky family. (the man is retired) We haven't been there in weeks except for one time after our friend "S" had already left. A~man had it all planned out that he wanted to give him an extra PWS awareness bracelet that he had. (he wasn't there that day so A left it with a waitress to give it to him) Today we went and "S" came down and sat with us. It was so sweet. I am the first person to be overly cautious with my kids but it is nice to have someone restore your faith in humans. I find it happens more often than not. Previously he had given A~man one of his USA pins. (he is a vet) Later he must have talked to his wife as she had him give Z~girl a beautiful charm bracelet that she loves.

Today he came over and sat with us to chat (that is what people do with us ahahha) and A~man asked if he got the bracelet. He said he did and then said "I thought that is what it was", meaning PWS. Turns out the man in his younger days was a P.A. He was familiar with PWS and thought it was either that or autism. (it's both) This man had been carrying around a grocery bag for weeks hoping to see us there, his wife had sewn Christmas stockings for A and Z!  They are beautiful!

A~man despite causing me extreme stress at times....so makes it up with what he teaches me...and the fact he lets me see such a side of people that I wouldn't if we were not blessed with him.

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.

Back To School (warning...possibly offensive to some)

I keep seeing this photo pop up on my Facebook with certain friends and relatives posting it as their children go back to school. I must say, I am not amused. While I must admit that I would very much enjoy an occasional break from my kids, I consider it an honor to stay home and teach them. In saying that I am not implying that my days are easy and that my children are perfectly behaved. Especially NOT Mondays. What is it about Mondays? Oh and mornings in general typically do not start well until after breakfast. 

How do my days start? EVERY morning the same questions. Mom, what are we doing for breakfast? These are the words I hear before my eyes even pop open from the A~man. It's as if one morning he thinks that perhaps we will not eat breakfast. I guess that's the Prader-Willi Syndrome talking. He doesn't just ask it once, he asks it over and over until he sees what we are having. I have thought about doing a menu calendar, (showing him what he is having the next day) but so far I am just not that organized!

Z~girl in the morning? Well she is following in her mama's footsteps as when I was her age, it was best just not to talk to me before 10 am....(sometimes that is how I am now...shhhhhh!)

But still, I feel blessed being able to have my children at home teaching them. Do I think everyone in the world should homeschool? Not at all. I do like that we live in a country that allows us the freedom to choose how we educate our children and I also know there are a lot of excellent schools out there. But to celebrate the fact that they are not with you just seems sort of sad to me. 

I know of a couple fellow homeschool mamas that have either finished up their last year of homeschooling or are starting their last year. I cannot even imagine what that must be like. It makes me want to slow down and even on the difficult days enjoy this time with my duo as the days pass by so fast.

I must confess, this morning I have gotten a late start to beginning our lessons. I consider this a perk of homeschooling though as in our home some of the best learning takes place after 10 AM. After this mama has had her second cup of coffee that is..... Our day today will be filled with lessons, Lego, and some free puzzle games. Oh and Coffee. Lots of coffee!

Understanding Child Brain Development DVD from The Family Hope Center~TOS Review)

 I was given the opportunity to watch a very interesting DVD recently called Understanding Child Brain Development from The Family Hope Center. The Family Hope Center is an international center that helps families that have children with special needs that include Autism, ADHD, Down Syndrome, and more. They do not believe in treating the disability but instead treating the part of the brain affected in a more holistic type of way instead of relying on medicine. I was especially intrigued with it as my son would be a strong candidate to be helped by an organization like this.

I think I have blogged about it before but we were blessed with my son at 4.5 months old as a foster baby. (he is almost 14 now) He was born with Prader-Willi Syndrome but over the years we have discovered he also has ADHD and is on the autism spectrum. Before he came to our home he spent much of the first 2-3 months in the hospital as he was also 9 weeks premature. Without going into too many details he was taken away from his biological parents due to medical neglect and other reasons. When he came to our home the back of his head was very flat (it actually still is), and his neck was atrophied to one side as he spent all of his time in a crib and most likely not held. 

One of the first comments we received from someone when he first came to live with us was "have they checked his brain waves" (what does that mean anyway, and who says that to a new parent?) as he was virtually non responsive. Well, until you tried to hold him. He did NOT like to be held but with help from awesome doctors, physical therapists, and occupational therapists (oh and I cannot leave out God!) we were given the support and guidance to help turn things around for A~man. We were told he might not live when we got him. Not easy for a couple that had been desperately waiting many years to become a parent. 

So getting the chance to watch these videos was fascinating! The first video I watched was Stories Of Family Hope which features families of children who have cerebral palsy, autism, seizures, and ADHD. (plus a brain injury) The stories were really well done portraying each family's situations whether detected at birth or later on. It also showed the children receiving intervention to help them. 

The next video was Understanding Child Brain Development and it was more of a seminar. My husband texted me while I was watching it asking how it was and I told him "it was a little dry, but very interesting at the same time". LOL It reminded me of a refresher college course, but I mean that in a good way. I did need a cup of coffee halfway through BUT it had a lot of very good information on it that I had just not thought about. It talked about the different functions of the brain and how different physical activities can benefit the brain plus the value of nutrition.

I was happy to see that over the years we have done many of the things- no microwave, daily exercise, sunshine, not food coloring/preservatives, mostly organic but I was able to obtain some new info that I hope to try out with my son. I found the "crawling' information very interesting as my son never crawled! He just rolled from one place to the next. I'm not sure I can get him to do it but it's worth a try. I'm just going to tell him it is an exercise to make him strong. ;) 

The Newell's gave some practical advice for families to help their families have better health which included understanding the child and working together, nutrition (eliminating EMF's), structure work, basic sensory stimulation, neurologically based mobility programs, and consistency. (schedule, emotional and social support) 

To order the DVD you can call 610-397-1737 or you can order Understanding Child Brain Development from the Institute for Excellence in Writing for $19.00. The video is targeted for parents and adults.