Tuesday, 20 January 2015

I can't believe my child did ......

Listening to the radio this morning the conversations was "I turned my back for a moment and can't believe my child did___.  Many people called in sharing stories of things that their children have done.  The stories ranged from putting things up their nose, including a child that put magnets up their nose and needed removal with a super magnet, to sliding down the stairs and getting stuck in the drywall, to painting a sibling.  A lot of the stories were quite funny but relatively common and I was left thinking that some of my children make these children seem like amateurs.

It got me thinking about the differences between raising typical children and children with various special needs.  Over the years we have experienced many things when we have turned our back for a moment and as some of the children have aged the creativity has increased however the maturity hasn't necessarily kept pace. This becomes a problem when the children/teens are older but still need the supervision of an infant/toddler.  The supervision needs to be kept up like when they were infants/toddlers or even more so.  I know for us when we had infants/toddlers we could put them in a crib and expect them to stay there, also they required more sleep so naps also gave us a break.  With our teens needing this sort of supervision they no longer nap and we no longer have the ability to place them in a crib for their safety.  When the "overgrown toddler" is out in public people have certain expectations based on their size/age but frequently the child isn't able to meet these expectations.  As a parent you are often viewed as over protective especially if the child has an invisible disability.  A lot of supervision and advocating is necessary when you are raising children/teens with special needs and guaranteed you will have stories to tell when asked to complete the statement "I turned my back for a moment and I can't believe my child did____?

Saturday, 17 January 2015

Finding Support & Saving Money, A Trip to the Movies

Last night some of the kids and I ventured out to the movie theater to watch the movie "Paddington".  It is always an adventure going out with our crowd so I always try and increase the number of "possible helpers" just in case we need extra support.  We put the "call out" that we were attending the movie if anyone wanted to attend with us and got one additional taker.  The kids and I loved having their big brother attend with us and I especially like having the additional support, just in case.

All of our kids with special needs that qualify have "access 2 entertainment" cards that allow for a support person to attend the movie (or other activities as specified) at no additional cost. See more about the access 2 entertainment card here in a previous post.  We have found the lure of a "free activity" to be a benefit when recruiting support for various activities  really I don't think it's the free activity that lures them it's the goodness of their heart and the strong possibility of some really funny stories of what may happen on the outing.  The cost of attending a movie, for a large family already adds up, so having support people getting in free is a huge bonus.

Having the extra help for this outing was especially welcome as we were running late (really tried to arrive early) and then when we got into line to pay one child grabs my sweater as he starts to seize.  Big brother was able to take the seizing child and the others to sit while I got the tickets and snacks.  Trying to get everyone and their snacks into the theater and seated was another challenge - a note to movie theaters:  it would be really helpful if you could deliver the snacks to our seats!  During the movie we had a couple more minor challenges but all in all a good time.

Wednesday, 14 January 2015

What??? But I didn't say anything!!!! - Non Verbal communication

It's all about the non verbal communication around here.  A couple of our young adults have been struggling with the way they respond to situations in their lives, not understanding that their actions tell a completely different story than the words coming out of their mouths. Employers, teachers, friends and family are reacting to the non verbal response and the young adults are completely baffled because they didn't say "anything".

For example when asked to wipe down the table, as she failed to complete the whole job when doing the dinner dishes.  Nothing was said verbally but the book that was being read is slammed down on the table, a large sigh was released, rolling eyes, stomping into the kitchen to grab a cloth, more crashing and banging, then a partial cleaning of the table happens.  Those that aren't able to ignore their responses are offended, scared or nervous.  The other day one of our children's workers did not know how to respond after a similar negative response and was concerned for her safety.  I realize that a degree of this behavior is common with teenagers but our young adults are not teenagers and they are taking this behavior to a whole new level.

We have been upping our social skill lessons around here hoping that eventually it will click with them that most people find these behaviors offensive.  It is hard when the adults in question can't read other peoples non verbal responses so they don't understand they are giving off similar messages.

We have been studying facial expressions making note that most of the emotional information is carried in the shape of the mouth and the eyebrows.  Collecting pictures from magazines, photo albums and the internet we have been playing games labeling the emotion portrayed. Using mirrors we have been looking at our faces trying to make different expressions.  Once determining the emotion and getting better at this game then we added in the fact that each emotion has many degree's within that emotion ie from feeling happy to estatic or mad to raging.

Body language also has a role in our study noting that posture, gestures and movement also carry information about people's emotions.  Tone of voice is also being considered as it also conveys at least as much information as the actual words that are being said.  Being able to accurately read voice tone allows us to judge whether a person is angry, sad, happy, tired or scared - it also gives critical information about whether the person means what they say (are they being sarcastic? joking? sincere? teasing? friendly or unfriendly?)

By playing games, charades, and watching people (either from a distance or on television without sound) we have been practicing reading people's communication.  I am looking for ideas if you have any suggestions on teaching this valuable but complicated skill, please leave a comment.

Saturday, 3 January 2015

Am I crazy to make a New Years Resolution?

It's the time of year when many of us are thinking about New Years Resolutions, part of me is thinking I should make a resolution and the other part of me thinks why would I want to add anymore to my already overflowing plate.  As a parent with children....lots of children....special needs children....lots of special needs children, life can be crazy and adding anything needs careful consideration.

As crazy as life as a special needs parent can be it is extremely important to care for ourselves both mentally and physically since we are particularly vulnerable to burnout and caregiver fatigue.  Keeping myself healthy - mentally and physically - is an important resolution to take on at the start of the year and throughout and I encourage other parents to also consider taking on a similar resolution.

What should my resolution (and yours) look like?

Taking time for myself and my husband - If we don't have ourselves and our relationship one of us is going to be left trying to cope with everything alone.  For the last couple years hubby and I have made a point of hiring our respite worker once a week for a couple hours so we can have a "date night".  I will admit that there have been times when we are both so exhausted that we have thought about crawling into our travel trailer for a nap while she watches the children and other dates have included doing errands however most of the dates have been spending time with one another.  We also make a point of spelling each other off at other times so that we can pursue things important to each of us as individuals.

Recognizing what I have accomplished each day not what I haven't got done.  Life with all these children can be unpredictable so although I may have many things on my never ending to do list, some days just don't go as planned.  This doesn't mean I haven't accomplished anything, it's just different than what was planned.  Things that are really important I try to do first thing in the morning before chaos breaks loose or when I have someone available to help with the unpredictable parts.

Making time to enjoy life.  With so much going on it is easy to get wrapped up in the business and miss the enjoyment.  Life isn't a race to the end we need to take time and enjoy it.  Schedule time and seize even the smallest moments making sure to take time to play, enjoy nature and have fun.

Ask for help.  Recognizing that we don't have to do it all and that we can ask for help is huge.  Many people that are caregivers feel more comfortable helping others and asking for or hiring help is difficult.  For us we started looking at what services different businesses that us use have to offer.  For starters we were able to get our grocery produce delivered, started doing more of our shopping online, our home school education assistants were able to help at the kids lessons, and started making use of respite services in more creative ways.

Help yourself by resolving to care for yourself and enjoy the moments.

Tuesday, 30 December 2014

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.

Saturday, 27 December 2014

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.

Sunday, 21 December 2014

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.