12 days of Christmas...Christmas lights galore!

Our Christmas festivities are still ongoing, making sure we have down days in between so everyone can regroup.  Most recently we went to tour the Christmas lights, done up as the 12 days of Christmas,  at a local garden.  The weather all day had been iffy and we weren't sure if we would go or not; fortunately the rain held off.  An added bonus of the wet weather all day was it was extremely quiet there as others must have changed their plans.

The kids are in awe of any and all Christmas lights however these ones were spectacular.

 Enjoying the lights and getting out for a walk was a welcome treat from all the sitting and eating that has been happening over the last couple days.  The  favorite part of the night, for most of the kids, was riding the carousel.

T'was the (Grinch) Night Before Christmas!

I hope that everyone had a very Merry Christmas.  On Christmas Eve we had our annual Grinch night, an evening that has grown over the years.  In the beginning it was us watching a movie the night before Christmas and snacking on appetizers and now according to the children it is a family tradition that also includes costumes.  Many of the girls wore festive (and maybe slightly tacky) looking tutu's and styled their hair like the "Who's from Whoville" Some of the boys wore tacky Christmas sweaters or red and/or green shirts.  We even had the "grinch" which changed multiple times as many wanted to try out the costume.

We watched the movie "How the Grinch stole Christmas" and snacked on appetizers for dinner.  We also enjoyed "Grinch punch" a combination of ice cream, sprite and green Kool aid.  The evening is done as a relaxed fun family night with the hopes of everyone enjoying themselves and not stressing about the next day.....Christmas.

Christmas day was spent at home with adult children, their families and grandparents joining us throughout the day.  Each Christmas Eve when the kids go to bed we remind them that Christmas doesn't start before 9:00 am with the hope that they will sleep at least until 7:00 am.  Our new living room was functional for Christmas which was a huge relief as we actually had space to sit and didn't need to sit on one another's laps.  Everyone was spoiled and happy with the gifts that they received.  We all enjoyed a turkey dinner, plenty of snacks and were thoroughly exhausted by the end of the evening.

Having our festivities at home is beneficial for the children/young adults that struggle with excitement and change as they were able to keep fairly much to the same schedule with meal times, sleep and going off to another room for some quiet time/play.  We did have a couple small meltdowns that were quickly redirected.  Boxing day (December 26) was spent as a complete down day giving everyone time to re group before any more festivities.

Another diagnosis for our family :-(

I have always tried to limit how personal my posts have been for my children's privacy.  I also try to post pictures that aren't identifying as some of my children have safety issues with people from their past.  Today I am going against those ideas in the hope of bringing awareness to a health issue my youngest granddaughter was born with.  On Oct 30 my son and daughter in law gave birth to a beautiful daughter, Naomi.  Shortly after birth, like many infants she became jaundice however her jaundice did not go away with conventional treatments.  Quickly she was referred to liver specialists and many tests were done resulting in her being diagnosed with Billiary Atresia.  All of the testing and treatment is done at Children's hospital which requires a day of travelling to get there.

There is a temporary treatment for Billiary Atresia that can be done if the disease is caught before the child is 9 weeks old.  Fortunately for Naomi this was caught in time and she was able to have a surgery called the Kasai procedure.

Kasai Procedure

The Kasai procedure involves removing the blocked bile ducts and gallbladder and replacing them with a segment of your child's own small intestine. This segment of intestine is sewn to the liver and functions as a new extrahepatic bile duct system.

The operation is performed by a Pediatric Surgeon who has had special training in the management of surgically correctable problems in children. The surgeon may be able to operate through many small incisions (laparoscopic surgery) instead of one large (open surgery) incision. The surgeon will determine the safest method of operating and will discuss this with you before the procedure takes place. The operation will take approximately 4 hours to complete.

Naomi was not able to have a small incision and had an incision from one side of her little body to the other side, also her surgery took much longer to complete being in surgery for 6 hours.  After the surgery Naomi was in the hospital for 10 days and just recently returned home to continue healing.  Naomi will require being on medication for the rest of her life to reduce the risk of infection and help with the removal of the bile in her tiny body.  Unfortunately just 2 days ago Naomi broke out in a terrible rash which is felt to be an allergic reaction to the strong antibiotics she will require throughout her life.  Currently the physicians are looking at what options they now have.  It will not be know how successful the surgery was for 3 months, however the surgery, no matter how successful is not the end of the treatment.  This surgery just buys time before a liver transplant is required.

Naomi is the first child for my son Curtis and his wife Meredith.  This diagnosis has been extremely hard on both of them both emotionally and financially.  Meredith is currently on maternity leave however it appears she will need to become a stay at home Mom to support Naomi with her tremendous needs.  Curtis has had to take extensive time off work during the critical times of Naomi's life.  The costs of travelling and staying near children's hospital are adding up and it appears they will be spending a lot of Naomi's life going back and forth.  When in comes time for a liver transplant they will need to relocate for months to another province where the transplant is performed.  Recently we were informed if they can not financially afford to relocate and survive, their daughter will not be put on a transplant list.  

As a family we are looking for all the support anyone is able to offer, we have started fund raising including an online crowd funding option (on the side bar of this blog).  I am asking anyone that is able to please share our crowd funding page or make a donation if you are able.  All prayers for my granddaughter, son and daughter in law are also greatly appreciated.  

And the Best Gingerbread House of the Year is....

Gingerbread houses galore around here.  When the years have come and gone, the moments that make your Christmas memories special are the Christmas traditions.  Quickly forgotten are the bright colored toys and the latest electronic gadgets.  What remains is the special times created through traditions.  Our family has many family traditions that we do at home together each year.  Some of our family traditions take into consideration our limitations as a family limiting the stresses that can be put on people at this time of year.

Each year as a family we have a gingerbread house building competition.  Who ever is available, including adult children and grandchildren, attends and we pair off for a friendly competition.  This year, one daughter participated via Skype as she wasn't finished college for Christmas break yet.  Some of our more creative family members modify the original gingerbread house creating unique master pieces.  The younger less able children have the option of pairing off with an older member of the family or they can decorate and eat gingerbread men.  This year 5 decorated gingerbread men with Mom while the others paired off making houses.

After all the houses are complete we have the judging.  Dad inspects all the houses coming up with a unique description/category that each house wins for.

Best rendition of a house fire

Trailer park house, with truck on blocks and gingerbread man drinking from his red solo cup

Best architectural design

Most traditional gingerbread house

Best candy train

Most realistic Santa and house

House that has traveled the most via Skype

and finally 

the house using the most candy

Crafting away our stresses

Life has been extremely hectic around here with the never ending renovations, Christmas preparations, power outages, flooding basement and the arrival of our adorable but very sick grand daughter.  So the kids and I decided to step away from the stress and spend the day baking, crafting and watching Christmas movies.

Christmas trees and stars made out of popsicle sticks and then decorated with glitter glue and sequins.

Sugar cookies galore, mixing colors of icing seemed like a good idea to some resulting in some unique colors.

Beading on pipe cleaners to make snowflakes and candy canes.  This was excellent for practicing our fine motor skills.

We also used coffee filters to make angels.  The heads were made from cotton balls cover with the coffee filter.

These reindeer were a huge success with hours of imaginative play after they were created.  I don't know if they will survive long enough to make it on the Christmas tree.

Meaningful Employment For People With Disabilities

Recently I attended a workshop called "Employment 101" this workshop discussed the importance of meaningful employment for people with disabilities.  Having a few children in this category that struggle finding and keeping employment I am looking for all the ideas that I can get.

First the Facts
52% of people with disabilities are unemployed while the Canadian unemployment rate is 7.6%

87% of people with intellectual disabilities are unemployed

56% of people with disabilities yearly income is less than $10,000 with women the hardest hit earning 50% receiving less than $5000 per year

People with disabilities can work, if they have the appropriate supports

Why employment is important to people with disabilities?
Work has a central role in most people's lives, offering rewards beyond that of an income.  Employment provides not only a monetary compensation but also social identity and status: social contacts and support; a means of structuring and occupying time; activity and involvement; and a sense of personal achievement.  Work is linked to social inclusion, and gives people with disabilities opportunities to participate in society as active citizens.  The barriers to work are linked to stigma, prejudice and discrimination.

One of my sons works with a landscape company and it has taken years finding the right balance for him.  If he works full time it is too much and everyone suffers from the crazies he presents when overwhelmed, however 2-3 days a week is great.  He puts in his time, comes home feeling he has achieved something, earns some cash and has stories to tell when others are talking about their work.  He recently had his work Christmas lunch and came home with a Christmas bonus, this part of his life feels normal to him....it's similar to his adult siblings and society.

What are the benefits to the employer hiring people with disabilities?
Employees with disabilities tend to be loyal, reliable and hardworking.  Studies show that people with disabilities have low absenteeism rates and long tenures.  Hiring people with disabilities adds to diversification in the work setting, something that leads to an overall positive work environment.

We have a close relationship with the person that employs our son so we get feedback on his work.  Over the years she has commented on our sons reliability and consistency, saying he might not work fast but he is extremely consistent.  She also never had to worry about whether or not he would show up on time and ready to work.

Santa Photos.... Christmas traditions or nightmares?

The Christmas season is upon us and soon families will be taking their darling children to get a great photo with Santa.  Every parent feels the same way, they HOPE it will go well, but can never be quite sure. We had those same feelings when we adopted the last 3 of our sibling group of 7 and their birth Mom had one special request "a picture of the 7 with Santa".  It must have been that new adoption excitement because when I look back a photo with 7 young children aged 1-7 all with high special needs, what was I thinking.   Anyway, I naively agreed thinking that doesn't sound too bad and if that's what is important too her we can do it.  

We spent hours making sure they look perfect! Dressing the kids up in their holiday best, making sure their hair was groomed and they were excited, not nervous, about meeting the big man.  We made sure that each child knew what they wanted to ask Santa for, rehearsed it several times.  Then we were off to meet the big man in hopes of capturing the perfect shot.  Maybe, even one for this year’s family Christmas card! Then it was game time….the kids had rehearsed it a million times in their heads, they knew what they want to ask Santa for and were ready for the big meeting, but something snapped, something went wrong and boom – full all out meltdown.  It took us 4 separate visits with multiple pictures each time to get a picture that looked 1/2 way presentable.  All our various attempts gave close families and friends a good laugh with all the photographic evidence, we may even a photo or two to show at the kids future weddings.  

If you try braving your own Santa photo and your child has special needs, I have some suggestions:

Find the right Santa for the job
Not everyone is comfortable with people with special needs and this includes Santa's so talk with your Santa ahead of time.  Children can sense if someone is not comfortable with them and their behaviors can escalate as a result.  Some malls have a special time for people with special needs to visit Santa and some Santa's will come to your home. Ask questions of your Santa:  Are they in a handicap accessible location? Is their a better time to come? Do they have experience with the type of special need your child has?  Another option is purchasing your own Santa suit which is more economical now with the cost of these suits coming down in price.  

Calming Santa fears
Many children are fearful of Santa, so if a Santa picture is important to you work with your child ahead of time.  Read stories, watch Santa from afar, watch videos, play dress up - putting on a beard so your child gets experience with beards and make a social story telling what to expect on their visit. 

What to wear
Have your child wear something they feel comfortable in.  If your child has sensory issues this isn't the time to put them in the frilly dress and/or shirts and ties.  Sitting with Santa is a challenge don't add to it by dressing them in clothing they are uncomfortable with.