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Saturday, 18 April 2015

6 hours on a deserted island

Today we met up with 2 of our adult sons, their lovely wives, our beautiful granddaughters and their dogs and went to a small island that is all parkland.  We were able to access this island by a small boat that transports 24 people at a time.  The plan was to spend the day geocaching, hiking and have a campfire so we could roast hotdogs and marshmallows for our lunch.


For most families this would mean throwing together a picnic and hitting the road however for us it's not that simple.


We were meeting at 10:00 am, an hour from our home, which resulted in a 6:00 am wake up call for Mom and Dad and hitting the ground running.  Each morning we try and get up beofre the kids so we can shower, dress, prepare breakfast, etc. before the kids are up.  On top of the usual routine today we had too pack for the day.

So what's needed for 6 hours on an island, without any amenities, for our large family?


Food....lots and lots of food.  6 dozen hotdog wieners, 4 dozen buns, condiments, 4 bags of potato chips, 6 bags of marshmallows and a flat of water.  Plus daily medication, diapers, wipes, multiple changes of clothes, first aid kit and sunscreen.  A plan of how and where we will change the childrens diapers as public washrooms/outhouses don't accommodate 10 year old "infants".  Hats, sunglasses and hoodies to help with all of  our sensory issues.  We also opted for a wagon and strollers instead of the wheelchairs (our wheelchairs don't do well on forest trails).

Once we had the basic prep for the day done it was time to get the kids up, on top of the regular routine we had....3 wet beds and 1 soiled bed (with added finger painting) resulting in 4 unplanned showers, 4 linen changes, 2 extra loads of laundry and a lesson on wall cleaning for our young artist.  One teen returned for more appropriate footwear, an adult child needing lessons on clothing choices for a warm spring day, a discussion with an adult child on why she must pack sanitary products for a day out and one teen strongly encouraged to eat breakfast.

Once load into the bus and 10 minutes down the road we needed to turn around as I noticed that the 4 year old had 2 left shoes.  We get going again trying to make up for lost time and come around a corner to a complete traffic stand still with vehicles turned off.  Nobody is going anywhere because the air ambulance has landed on the highway for a medical emergency.

We finally arrive at the boat, that was nice enough to wait for us and we head to the island for some fun.  While at the island we explored the shore line, found a nest of snakes (which was exciting for some), a couple climbed a tree hoping to find a geocache, found another geocache, hiked, played and ate.  We were thankful for the first aid kit when our young adult cut the tip of her finger exiting the outhouse, we really don't know how she managed that. Overall it was a very enjoyable day and well worth every minute of work getting there.



Tuesday, 7 April 2015

NO REALLY, SHE'S NOT!!!!

"Oh she is so sweet" have become the words that irritate me beyond belief.  Our daughter has FASD, low cognitive function and seems to be developing some severe mental health issues, doctors are leaning towards a diagnosis of schizophrenia.  As we are the people around her constantly, we get the brunt of her mood swings and it is especially irritating when we have been verbally attacked for weeks from her and then someone who doesn't know us that well says " I was talking with....she is just so sweet".  Comments like these make me want to scream NO REALLY, SHE'S NOT!!!!

It's not that I don't want people to see the nice side of her or to have positve thoughts about her.  It's that we haven't seen that side of her for a long while and would love to have a break from the crazy making.  When you add a mental health low with PMS everyone should run for the hills!  I want to run for the hills but can't get away.

Working with her physicians and mental health team we have been making progress at helping her however it is just as important (if not more important) to help ourselves and the rest of the family.  If the rest of the family isn't strong and well cared for we won't have the strength to support the ones affected by mental illness.


1. Accept your own feelings and know that you are not alone.
It is natural to feel many different emotions when a loved one has a mental illness.  Other people experience the same challenges and complicated mix of emotions.  Let yourself and family feel whatever they need to feel.

2. Learn more
Take time to learn more about mental illness.  This will give you a better understanding of your loved one's experiences and help you see what they may be going through.

3.  Stay connected
Embarrassment, social stigma and fear can stop many family memebers from seeking help when a loved one has a mental illness.  But that can isolate you at a time when you need the most support from others.  Talk to trusted friends and family and let them know what you're experiencing.

4. Join a support group
Support groups are a good place to share your experiences, learn from others, and connect with people who understand what you're going through.  Find the support that works for you, it could be a group of friends, a support group or a counsellor.

5. Take time for yourself
If you are caring for a loved one, your responsibilities may use up your physical and emotional energy.  It's important to take time for yourself and the other members of the family.  It can help you recharge and give you a more balanced perspective toward any challenges you experience.  Schedule opportunities that allow you to relax, have fun and get away so you can come back to your loved one with a healthier outlook.  You can't care for someone else if you haven't cared for yourself first.

6.Seek help for yourself
Caring for a loved one who's unwell can be stressful.  Seek help if you find your own well-being slipping, and encourage family members to seek help if they need it.  Mental illness can have a big impact on family relationships.

7. Develop coping strategies for challenging behaviours
There may be times when a loved one shows strange or challenging behaviours that can make you feel confused, embarrassed, or scared.  This can happen in public or in private.
- Make a plan as a family how to best deal with situations
- Understand that their behaviour is not personal, even when it feels personal.

Friday, 3 April 2015

Life skills as play

We have been adding "life skill bins" to our home school curriculum.  Many of my children have limited abilities and it takes them a long time to learn various skills so it is important to teach them practical life skills early.  Most recently we added a "laundry life skill bin" - we purchased 2 small laundry baskets from the dollar store and labeled one "lights" and the other "darks".



 We then included 12 pairs of socks, 6 white pairs and 6 black pairs and also a clothes line and clothes pegs.  To aid with the imaginative play we also made a washing machine out of a cardboard box.



During life skill class we practice sorting the socks, darks and lights.  We also hang them on the clothes line with the clothes pegs which is working on our pincher grasp and coordination.



 Matching the socks into pairs and rolling them together is another skill we are working on.


While "playing laundry" we also practice our counting, expand our language skills and have a lot of fun.  Our laundry bin also has a folding option with multiple coloured face clothes for sorting, hanging and folding.  Once these 2 options are mastered, outgrown clothing will be added for practice and eventually the kids will take over doing the laundry....hopefully, years down the road.  We also reinforce their sorting skills every time they change clothing by having laundry hampers marked "lights" and "darks" for their dirty clothing and the adult changing them oversees the laundry being put in the correct hamper.

Stay tune for more life skill bins.

Tuesday, 31 March 2015

Naomi needs a liver transplant

It has been determined that my granddaughter, currently 5 months, will require a liver transplant before she turns 1. The last week was spent at the Edmonton Childrens hospital.  My son, daughter in law, granddaughter and both grandmothers (myself included) travelled the 2000 km for a week of testing, teaching and information regarding the process required for transplant and organ donation.

We started the process with more testing for Naomi, she had a MRI, CT scan, ultra sound, X-rays, ECG, echocardiogram, blood work....lots of bloodwork, so much that they had to take it over days because they maxed out the allowable amounts to be drawn each day.  After the testing it was appointment after appointment meeting with each medical professional that makes up the transplant team.  The occupational therapist and neuropsychologist both did base line assessments on Naomi so they will be able to determine any loss she may have as a result of the disease progressing or the surgery.


We met with an infectious disease specialist to discuss accelerating her vaccines as her immune systems will be severely compromised after the surgery and for the rest of her life.  After transplant Naomi will be put on anti rejection medication which will help with the transplant however also makes her vulnerable to every virus out there.  The infectious disease specialist also discussed with us the many potentially dangerous situations Naomi will need to avoid, severely limiting contact with anyone with a virus, avoiding contact with birds (including chickens, her other grandmother is a chicken farmer), reptiles (her parents will be getting rid of their geckos), avoiding eating any game, never able to get a "live" vaccine after surgery, etc.

We met with the transplant surgeons to discuss the process, timing and risks involved.  It has been determined that ideally Naomi must grow for the surgery to have a better potential for success.  It is preferred that transplant patients weigh at least 10 kg and Naomi is currently 6 kg.  As the liver disease progresses the ability to grow is severely limited as the body is not able to digest the fats in the food and the body stores fluids around the damaged organ limiting room for food.  We have already been seeing signs of these issues for Naomi so the doctors will need to continue monitoring her trying to determine the optimal time for surgery.  A dietician is also involved to guide optimizing Naomi's feeding for the best growth potential.  In the future Naomi will require tube feeding so she can be fed 24 hours per day but for now she is being breast fed and getting a high calorie supplement that doesn't require bile to break down the fat.

A cardiologist and neurologist both met with us after testing as they both look for any possible risks that might affect the surgery outcomes.  An allergist was brought on as Naomi had a reaction to one of her medications after the last surgery and they need to determine all risks before the next surgery.



We had a teaching session that explained all the steps involved in waiting for a donor, the type of donors, getting the phone call saying they have an organ match, surgery, and the steps to recovery.  When the surgery does happen Naomi will be in the hospital for 4-6 weeks, then discharged into the hospital community for a couple months before she is able to return home.

With a liver transplant there is the option of having a living donor or a cadaveric donor, your liver is the one organ that regenerates and the part that is removed will grow back.  Both of Naomi's parents started the process to determine if they would be an organ match for her.  Meeting with the living donor coordinator we learned that a living donor needs to be 18-55 years of age, have the same blood type, weigh 60kg or less, not be overweight, have a small frame, healthy habits and good health.  The testing for the donor is similar to the testing for the recipient as the goal is success for both parties.  While in Edmonton it was determined that Naomi's father was not a good match due to his stature but they are still testing her mom.  Ideally parents aren't desired donors as they are so concerned about their child that they don't make very good patients and look after their own recovery.  The recovery time for a donor is 3 months, meaning full recovery by 3 months.

We finished our week with a visit with a social worker who was there to share what resources are available and things to consider.  Naomi and her parents will be moving to Edmonton for 3 plus months, her parents will need to be available to support her limiting their ability to work, they will need to set up a temporary home in Edmonton while maintaining their current home, if Naomi's mother is the donor she will also need support to help her recover.

Tuesday, 17 March 2015

Hockey, swimming and Special Olympics

With the close of this season of sports, our young adults involved in Special Olympics have been participating in the end of season competitions.I really like Special Olympics, all the people there are so loving and accepting, having been too many local practices and then competitions with multiple teams I believe this is the way most of the groups are.  This applies to the many dedicated volunteers and the athletes alike.  There aren't to many places that you can walk into that everyone, even strangers, are excited to see you and will come up and give you a hug.

Ring hockey recently had a tournament and then a fun game against our local junior hockey team.  At the tournament they played against multiple teams unfortunately the teams were all ranked higher than them and they didn't really have a chance.  The wide point spread didn't seem to deter any of their effort or enthusiasm while playing.  The week after their tournament they had a game with local junior hockey team as a fundraiser to support their team.  The young men from the junior hockey team were amazing with our athletes.  They played to the teams level, maybe even slightly under, yet didn't make it obvious, engaged our team team and thoroughly seemed to enjoy playing against our team.  When either team scored a goal, which didn't happen often for the guest team, everyone (didn't matter what team you were on) was giving high fives, much to the surprise of our guests.


The kids also participated in a swim meet recently and we were completely surprised when our daughter came home with a 1st and 2nd place ribbon.  Each athlete had the opportunity to sign up too race in what stroke and length of swim they felt able to compete in.  Everyone that attends practice for whatever sport is able to participate in the competitions and everyone has the opportunity to participate the same amount.  The cheering was incredibly loud for every swimmer as the other participants encouraged one another.  It was amazing too see athletes that really seem to struggle with their limited mobility on land, get into the water and enjoy competing no matter what their ability level.  It did not matter whether they won or lost they participated, everyone cheered for them and they were proud of their accomplishment.

In our area some of the athletes participate in every sport available but for our young adults we limit them to 2 per season as we try to keep a balance with everything in our life.  I strongly encourage you to check into Special Olympics if you have someone in your life that would benefit from joining or if you are sports minded and willing to volunteer your time.  For now we are heading into softball and soccer season so you will see at the fields.

Sunday, 1 March 2015

Reducing frustration, 1 ball at a time

When we adopted our son 2 1/2 years ago, at 2 years of age, he struggled with almost everthing and many of our friends and family thought of him as difficlut to love.  With severe sensory issues, autism, epilepsy and a chromosome deletion everything in his life triggered screaming, raging and head banging.  Our sons abilities were extremely delayed, he wasn't walking or standing, could only sit when propped up, he could not speak and his feeding was similar to a 6 month old.  Existing took major amounts of energy and he slept the majority of the days and nights only waking for nourishment and a limited amount of interaction before the screaming, raging and head banging returned and the need for more sleep.

This little boy only had one thing that made him the slightest bit happy, so we knew that we had to work with this interest if we ever hoped to have a happy boy.  The slightest bit happy meant he wasn't screaming, raging or banging his head for a couple minutes while we tried to interact with him.  We needed to meet our son where he was at, and progress from there.  He was able to hold a ball and enjoyed watching us play with a ball.  We would have mutliple very short sessions throughout the day playing with a ball building slowly and steadily on skills and language.


Speech increased as we described everything, starting with single words, and increasing the number of words.  Ball, roll, throw, roll the ball, etc.  We used "picture cards" and "sign language" while verbally speaking hoping to make a connection.

Strength and coordination increased as he went from holding a ball, to moving to reach for the ball, to rolling, throwing, catching and kicking the ball.

We varied the balls, shapes, sizes, weights, textures and colors which built on the strength, coordination and topics for speech.  We encouraged him to play with siblings and pets,  with the balls.  When we attended therapies we had already started developing a pathway for the therapists to reach our son which they were able to work from.


From starting with a simple ball 2 1/2 years ago he is now able to play with many other toys and work through his therapy sessions working on a variety of skills.  He is still substantially delayed but he is making huge progress from the little boy that spent the day screaming, raging and head banging.
We will still resort back to that ball whenever we are working on a particularly difficult skill.  Most recenty we took 2 soccer balls to the playground hoping to work on social skills with peers.  Today there were 3 other young children and when they saw us coming with 2 balls they came over (with their adults) wanting to play.  All the adults encouraged the children to take turns and they all enjoyed playing together.  Having 2 balls made it easier so each child had more turns so nobody lost interest too quickly and if our son decided not to have anything to do with sharing at least the other children could use the 2nd ball.

All the hard work from therapists and family, that started with a simple ball, is paying off.  People regularly comment on what a happy little boy he is and the head banging, raging and screaming has dramatically decreased.   Finding that interest to build on took time but was well worth the effort and throughout his life I believe we will be looking for more interests to build on as we develop more skills.

Friday, 20 February 2015

Substituting art for therapy

We have been working our way through the kindergarten level of the Home Art Studio.  I like when we have activities that incorporate many of  our therapy and educational goals so the kids don't realize they are working and this weeks art project fit right in (with minimal modifications).  Today's project was a Van Gogh inspired Sunflower picture.


Science
Before starting this project we went for a walk and discussed the seasons.  We made a point of noticing that spring is coming and plants are starting to sprout.  When making our picture we discussed how the sunflower seeds that we eat are actually the seeds for the plant to reproduce.




Occupational therapy
Cutting straight lines and circles
Tearing paper to make leaves
Glueing and working on hand strength by squeezing the glue
Using our pincher grasp picking up sunflower seeds and placing them in the center of the flower


Speech therapy
We worked on "prepositions" when discussing where to place the various parts of the picture - beside, next to, in front of, under, etc.
Also we worked on following directions from 1-3 steps depending on the child

Math
Shapes - circles and rectangles
Length and size (in relation to the stems and circles)
Counting (circles, flowers, stems, and sunflower seeds that we placed in the center of the flower)
Patterning when painting the background

We have really been enjoying the Home Art Studio as a way of creatively working on our goals and the kids are extremely excited whenever they see "art" listed on their daily schedule wondering what this week project will be.