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Sunday, 31 August 2014

We are under police lock down!

It's been nothing but changes here between the ongoing renovations and 2 daughters moving out, 1 to college and 1 to university.  It is a huge change to the family dynamics whenever a child moves out and with 2 leaving at the same time it has been a tremendous change.

We started their move to their new homes with the hospital visit for the younger children and then the girls, another sister and their Dad left driving "convo style" to their new homes for the school year.  Both girls have a very poor sense of direction so the plan was for them to follow their Dad who is towing a trailer with all their possessions.  Following one another in separate vehicles in a very busy city is challenging but they made it and having walkie talkies in each vehicle was a tremendous help.

The trip has been plagued with mishap and adventure from the start and it seemed to follow them all the way to their new homes.  While the girls were watching some of their siblings at the hotel, while the rest of the family was at the hospital, one teenage brother managed to lock himself on the 14th floor balcony and it was seeming like they weren't going to be able to get the door open.  After a couple hours they were finally able to rescue him, not being there but I am guessing the first hour involved laughing at the brother.

Later that evening after many hugs and goodbyes the 4 left to our daughter's new homes.  6 hours into their drive in the middle of nowhere Dads vehicle began to overheat and after pulling over to investigate they found the vehicle would not restart.  A tow truck was called and the vehicle was taken to a local garage for repair.  Everyone was able to get into a hotel at 4am and get some sleep while waiting for the garage to open and then repair the vehicle.  After sleeping and before retrieving the vehicle they went to a local diner for lunch.  At the diner they met a very outgoing waitress that seemed drawn to my outgoing family and she asked if she could join them on their trip.  At first they thought she was just joking around and when finding out she was serious they had to politely decline her request.


After more driving they were looking for another hotel and it seemed that almost all hotels were full.  Fortunately the staff, from one of the full hotels, phoned around to other hotels and were able to secure the only available room at another hotel.  The next morning while preparing to leave they received a phone call from the front desk stating the "hotel was under police lock down and please do not leave your room".  After what seemed like a life time they received another call from the front desk stating "it is safe to leave your room".  When they left their room they saw multiple police officers and the local news people with cameras but were not able to determine what happened.

Everyone arrived at the college dorms and they were able to unpack the trailer and get the first one settled in.  Everyone stayed a while ensuring she was comfortable, her computer and printer was set up and she had a sense of her community.  While getting around the community, even though everything is about 5 minutes away, it was determined a GPS was a necessity or this young lady may never make it back to her dorm.  More goodbyes and time to get the university bound one settled 3 1/2 hours away from her younger sister.

They arrived at the next "new home" and got everything unpacked.  Met the roommates, did some shopping, had some lessons on getting to the university and hooked up the computer and printer.  More hugs and goodbyes and it's homeward bound for Dad and younger daughter.

Saturday, 30 August 2014

Schooling options....what works for you?

We as a society are fortunate that there are so many options available for schooling our children and if one program doesn't fit your child's needs you are free to try something different.


Over the years we have had many go through the public system and it has worked well for some of them.  This year we do not have any in the public system which  in a way is fortunate as the teachers are currently involved in contract negotiations and school isn't expected to open for a while.

For some of our children with special needs we found they were able to be better supported if we home schooled them.  With the program we are enrolled with the "home school" has access to the provincial special needs education funding.  With the use of this funding the parents are able to direct how they would like the money allotted to support their child.  The parents can request therapies, special education assistants, therapy equipment, activities, resources, etc. This home school program is also able to receive special needs funding for our adult learner providing extra support for working on life skill training.


Some home school programs have a combination of home and face to face opportunities.  The school we are enrolled with has this option and the face to face programs range from academic classes to supplemental field trips.  As a family you are free to choose what works for your child.  We have been able to choose to send our child to activities that they are successful with and keep them home for extra one on one support with the challenging subjects.  We feel the children are getting the best of both worlds by having the benefits of being in a class and the added support of home.

This year, like last year, we will be home schooling 8 children with a range of special needs.  We have 3 special education assistants hired that will come into our home and work along side me schooling the children.  The children will also receive weekly speech, physical and occupational therapy supports.  Other supports they will be receiving include vision therapy, therapeutic horse back riding, private swim lessons, art therapy and therapeutic equipment.

The school provides a special needs teacher that helps select curriculum that is appropriate for the child, prepares the IEP and report cards.  The school with the parents hire the education staff and the school looks after the staff training and other staff issues that may arise.  The parent is responsible for the planning, implementing, overseeing and teaching along side the education assistants.

This weekend I will be busy organizing and setting up our learning areas, planning out our days and getting ready for back to school.  I have been researching hands on projects to match up with our learning outcomes and it looks like we will be having a fun year.  The first day of school for the teens is a retreat to a local summer camp where they will meet up with their school friends for games, water sports and lots of fun.

Friday, 29 August 2014

Bringing back fun

We have many medical and therapy appointments for our children and at times have been so busy focusing on getting it "all" done that we haven't taken enough time for ourselves or enjoying life.  The children need time to be kids and not just being transported from one appointment to the next.

In the past, for Children's Hospital visits, we made the mistake of getting up extremely early and traveling for multiple hours, arriving tired and cranky, only to return home after more travel, very late and exhausted.  After deciding that the trips to the hospital are inevitable but how we handle them is optional, we made the decision to make each trip a mini vacation.  Fortunately most of our children's hospital visits are for non-intrusive procedures leaving the kids able to participate in other activities either before or after the appointment.

Now when going to Children's Hospital we book a hotel arriving the day before the appointment and leaving the day after.  Did you know that hotels near various hospitals have a much cheaper "hospital" rate?  Also various medical plans and/or some government programs will pay a portion of the hotel cost.  These programs are a huge asset for families needing the hospital.  On our most recent hospital visit we were able to have 2 adjoining rooms for $19 each, with the support of these programs.  Some medical plans and government programs will also pay mileage and ferry costs (if required).  If you need to travel for medical appointments be sure to check what supports are available.

On our recent trip to Children's hospital we left home just after breakfast to travel for our medical appointments.  Upon arrival we had time for a relaxing dinner and then a swim in the hotel pool.  Swimming at the hotel pool is always a treat for our children since the majority of time they have sole use of the pool.  The next day we arrived well rested for our long day of multiple appointments, after 9 long hours we returned to the hotel for dinner and another swim.  Our final day of this hospital/mini holiday we spent at the local zoo before returning home in time for bed.



My hope is that when reminiscing about their childhood the fun activities stick out more than the multiple appointments with doctors and therapists.

Sunday, 24 August 2014

Superpower for good or evil....what's your power?

If you could have a super power what would it be?  Would you choose super strength, maybe you would choose the ability to fly or what about telepathy?


My daughter has a very unique super power, whenever she sits in her wheelchair she becomes invisible.  Now to anyone who knows her she is not invisible but to strangers she is.  We will stop at a store or mall and if seated in her wheelchair people look away, won't make eye contact, or look at her as if they are looking through her and generally avoid acknowledging she exists.  When we are at a busy attraction, were either her Dad or I are pushing her in the wheelchair, people will walk into her and her chair, spill things on her or bump her with things they are carrying.  The majority of people do not acknowledge or apologize for doing this to her.


So far she hasn't been able too use her superpower for good or evil and with her autism she is probably more comfortable being invisible.  As her Mother I would prefer she doesn't practice her invisibility.  Quite often I will place my daughter in a shopping cart when we are out and the difference is tremendous.  People will talk with her, comment on how cute she is and generally engage her.  When in a shopping cart people do not walk into her or spill things on her.

Next time you are out and you see a child sitting in a wheelchair remember they are a child first.  Look them in the eye, smile and say hello.  This actually goes for anyone sitting in a wheelchair or using a walker because my guess is they all have the same superpower my daughter has.

Saturday, 23 August 2014

Less pain more gain.....preparing children for the hospital

We are preparing for 7 of our children to see a team of doctors at Children's Hospital.  For our appointment we need to spend a day travelling each way so "hoteling" is also required.  Even when one child has an appointment we bring a support person which helps us focus on the child's needs and answering the doctors questions but with 7 being seen we will be bringing multiple support people.  This is going to be a grand adventure getting all of us to the hospital and through the appointments but we are hoping it will all be worthwhile and the doctors will provide us with some insight into our children's challenges.



It is important to prepare the children for a successful time at the hospital and with the doctors.  

Always tell your child ahead of time about any medical appointments or procedures.  You know your child best and know how much preparation time is required for your child to process the information and ask any questions they may have.

Prepare your child for their appointment by explaining what they can expect to happen and what is expected from them.  It is important to be truthful with your child, quite often children are worried if the procedure will hurt.  If there will be discomfort be honest and explain why it is required.  Depending on the procedure we will watch videos, read stories or role play to help the child understand what will happen.

Before the appointment, work with your child to find ways to help them be comfortable while at the appointment.  One of our daughters gets so worked up when bloodwork is required that it becomes more difficult for the lab technician and makes the procedure very traumatic.  We have found that practicing being still, deep breathing and relaxing has improved this procedure.  We also always bring a comfort item and something to do while waiting for the procedure.

During the procedure focus on distracting your child so the medical professional can do what is required.  Don't let your emotions get the best of you, stay calm, and reassure your child.  We usually chat about something fun we have recently done or something that's coming up.


After the procedure comfort your child and acknowledge their success.  Over the next couple days talk about the appointment, discuss why it was required and tell them what a good job they did.

We will be taking time to visit some tourist attractions and have some distraction fun also while away.  Getting to and from these appointments and the length of time at the hospital is extensive so we want the children to have some positive memories that hopefully out weigh the appointment.

Saturday, 16 August 2014

Ahoy matey....Adaptive Sailing

We recently had 2 of our children try out "Adaptive Sailing"  and they had a blast.  They went out in "Martin 16 sailboats", these sailboats apparently cannot capsize or sink and are supposed to be safe in any wind or sea condition which made me more confident encouraging them too "set sail".  In each sailboat there was a volunteer instructor with each "sailor" and then there was also a powered "support" boat with an instructor that was giving direction to the entire group.  

Sailing, for people with disabilities, gives them sense of freedom and independence.  With the use of adaptive technology, people with significant physical limitations or cognitive limitations can compete equally with able-bodies persons.  This program was open to adults and children with visible or non-visible disabilities at a very low cost of $15 per 2 hour lesson.  This was the first time experiencing sailing for my children but with this program they can participate just to experience sailing, to become independent sailors or refine skills for competitive sailing.  

The weather for today's sailing was not ideal as there wasn't much wind but they were able to get out in the boats and the power boat towed them around the bay.  They also met some new people and experienced something different.  

We have tried out a few "adaptive sports" and I highly recommend them.  A lot of these programs are supported by very knowledgeable volunteers and I am thankful that they take the time to support individuals in these programs.  My children have been able to try new sports that we wouldn't be confident teaching them.  

Another benefit of participating in these types of programs is that it gives the family a small, often well needed, break.  We were able to sit on the beach and relax as they participated in this fun program, a win for all.

  

Friday, 15 August 2014

Life with friends is hard...a life without friends is tragic

Friendships can be difficult, for some our our children with special needs it can seem almost impossible.  Our children with special needs have unique barriers that make building friendships extremely hard.  As a parent it is our job to teach our children how to interact with others and having meaningful relationships.  It is also important for us to understand what we think a friendship.relationship should look like may not be the same as what our children need.

A few of my children have a very difficult time with relationships so we need to step in and assist them in learning these skills.


In order to make friends you need to be around people.  This can be a challenge if the majority of your child's time is spent at medical and therapy appointments.  It takes added effort ensuring your child has the time and opportunity to make friends.

Your child needs to be able to communicate with people to make friends.  Depending on your child's challenges this can be difficult, we have children with severe speech challenges so it has been important to give them the skills to communicate.  Our children use augmentative communication as a form of communicating but they need to feel confident with this method to communicate with peers.  Other children in our family have autism so role playing has been helpful in building communication skills.

The social skills of your child should be comparable to their potential friends.  Many children with special needs also have challenges with their social skills so it is important to work on these skills to broaden their friend pool.  We have used the Michelle Garcia, Social Thinking program to help teach our children these skills and have had them participate in social skills groups.  Being involved in activities and social situations also builds up these skills.

Your child's interests and physical abilities should be similar to their friends.  The 10 year old's in our neighborhood spend a lot of time outside riding bicycles and climbing trees, our daughter does not have the ability or strength for this which leaves her out.  Our 19 year old stills enjoys playing with dolls and the majority of her peers are going to college or out working.  When the interests and abilities are limited it may mean pushing the child and/or finding others with similar limitations. We had the children join some activities that helped match the abilities - for example our younger daughter joined a first aid group where they were all learning new skills and our older daughter joined Special Olympics which put them both in situations to meet potential friends.

The skills of being and making friends are just as important as walking, dressing and personal care so take the time to support your child in learning this valuable skill.