Wednesday, 30 April 2014

"I led a school walk out" - advocating skills for children

Teaching your child to self advocate, stand up for their rights and stand up for others is incredibly important.  A child that can stand up for them self will be less likely to be bullied, will have more self confidence and be more likely to participate in activities.  We have encouraged our children to stand up for themselves and others around them from a very young age.

Self advocacy is learning to speak up on your behalf and ask for what you need in a straight forward manner.  When advocating you learn to take charge and be more independent.  It's communicating your needs and wishes and it's knowing your rights and standing up for them.

Start early to let your child become as independent as possible.  Let them take on responsibilities and experience consequences.  This means that you are going to need to step back and give your child the opportunity to make choices/decisions for themselves even if it's not the choice you would make.

Teach your child their rights and responsibilities. How can you expect them to stand up for themselves if they don't know what their rights are?  Every place your child will go has rights that are there for their safety and protection - rights as a citizen, medical rights, education rights, employment rights, rights for clubs and activities, etc.  Also encourage your child to become informed about topics that may affect them - follow the news, attend meetings and read.  If your child is standing up for something they should be informed.

Ensure your child knows how to politely and respectfully advocate for their needs.  Quite often adults do not appreciate hearing that they are doing something wrong but are more willing to accept this if done with respect.

One of my daughters, at the age of 12 years old,  had a teacher that punished students for misbehaving by having them do push-ups.  My daughter knew her rights and the rights of her classmates (from studying the Canadian Charter of Rights and Freedoms) and decided to take it up with the teacher.  She politely asked to speak privately with the teacher in the hallway.  The teacher was shocked for being called out about her discipline methods but impressed by the way my daughter handled the situation (we heard this from multiple teachers after the said teacher discussed this event in the staff room). This would not have gone over nearly as well if she had brought it up in front of the class.

Be aware that you are a role model for your child.  How do you advocate for yourself and others around you?  Do you present yourself in a manner that you would be happy seeing come from your child?

Support your child in their advocating.  When your child comes home and says "I had a problem with....." Listen to your child and discuss how they handled the situation.  Give feedback and ask them if they want your help.  Maybe your help is giving them suggestions of the next step or maybe it is you following up on their behalf.

Teach the chain of command - if your child has an issue that cannot be resolved ensure that they know where they can go next for help.

Self advocacy is a critical skill for our children to learn which will help them achieve their goals, increase self sufficiency and become successful adults.  While learning these skills your child may handle situations in a manner that might not be ideal (to you).  They may learn skills that overtime will need to be tweaked or toned down.  There have been many occasions that one or two of our children have come home and said something like "I led a school walkout today, I started a petition, I had a problem with an educations assistant at the bus stop and now need to phone the school principal or that delivery drivers driving made me uncomfortable I am going to phone the company office".  When hearing comments like these sometimes fear does overcome me but I take a deep breath, hear them out and stand behind them offering support.

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Friday, 25 April 2014

18 of each

When first becoming a parent I did not even consider that a huge part of the job description was going to be advocating for my child and how much that would entail.  This part of my parenting role became more important and much larger over time between children being diagnosed with special needs and accessing school and their community.

Become an expert about your child's disability
In order to teach others about your child's needs you need to understand their strengths and weaknesses. You need to know strategies that help your child compensate for his or her weaknesses.  Keep in mind the uniqueness of your child although they may have a "common diagnosis" they are still individually affected by their challenges.  We commonly tell people we have 18 children.... one of each, when describing their challenges even though many have overlapping diagnosis.

Know your child's rights
Be informed about your rights in the subject you are advocating - whether you are advocating at school, the doctors or in the community all these places have rules they must follow so as a parent do your research.  "Google" is my best friend when it comes to finding out mine and my child's rights.

Document, document, document
Having accurate easy to access documentation of your child's medical information, assessments, education plans, report cards, etc is extremely important.  We keep all information regarding each child organized in a binder that can be easily transported to any meeting.  By having all the information organized we appear more professional and competent which helps when all you want is support for your child.

Make notes summarizing any interactions with professionals regarding your child so you can always refer back.  Document what the next steps or follow up actions that were agreed upon.  When making phone calls document the time and date even if you are leaving messages. If you have requests where applicable put these in writing and allow for written responses so you create a paper trail.  This paper trail will become necessary if you don't get the desired results and need to advocate at a higher level.

Keep your emotions in check and keep on topic
When meeting about your child have clear goals in mind and keep bringing the meeting back to those goals.  I have found that the professionals at meetings frequently use distraction as a way of not dealing with the issues, keep on topic, be the "broken record" bring the conversation back to your goals.

Understandably discussing your child's needs can be extremely emotional but when advocating for your child you need to keep your emotions in check.  If you get so worked up that you can't talk or are crying you have done the professional a favor and got yourself of topic.

As a parent you are your child's number one advocate when the teachers, doctors and other professionals go home at the end of the day you will still be there with there.  Remember you know your child best and the professionals are there to help.

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Monday, 21 April 2014

Easter crafting

It was a rainy Easter weekend here but we still had a lot of fun.  With family visiting and staying we did not venture far from home.  We had our Easter family dinner on Saturday and also celebrated Gran's 70th birthday.  There was lots of time spent cuddling our granddaughters, visiting our parents, adult children, their spouses and dogs.

We also spent a lot of time at the table dying eggs, making crafts and decorating cookies over the last few days.
Egg dying (above)
Working on fine motor skills (above)
 - print off a simple coloring page from the internet - have the child paint it and then cut it out if able
-cotton balls and eyes to bring bunny to life
-draw a simple tree shape and then practice "pincher grasp" crumpling tissue paper for blossoms then glue
-easter basket filling for grass

Toilet Paper roll crafts(above)

And some beautifully decorated cookies.(above)

Saturday, 19 April 2014

Our family has expanded.....again

We have a new 4 legged addition to our family!  Our new puppy is a 8 week old silver lab named Aileron.

When telling people his name we have received a variety of blank stares to comments like "oh that's quite a mouthful".  My husband named him the dog that's all I can  Actually many of the members of our family are pilots or airplane enthusiasts and since an aileron is part of a plane the name is fitting.  We are also extremely cautious naming pets after having a dog for many years and then adopting an 8 year old with the same name.  We aren't planning on adopting again but just in case I hope we don't meet a child named Aileron.

The goal for this puppy is to be a family service dog for whoever needs help at the time.  We do have 2 other dogs but at 9 and 13 years they are getting tired.  Since arriving Aileron has been traveling with us to therapy appointments and therapeutic horse back riding.  He has been drawing a lot of attention and is loving all the attention he is getting.  I am enjoying the fact that my children that don't like speaking to people are eager to tell people about their new pet and are being pushed to interact.

One of the goals we have for him when he is older is to attend agility classes with a few of our children.  The thought is that this will help the children become more confident in giving commands/directions, exercise both participants and be a non therapeutic fun activity.  A couple struggle with confidence so we are hoping the practice of giving commands or saying something like they mean it will transfer to day to day life.  Social interaction is also a challenge so with the main focus being on the animal we hope that this may expand their interaction with humans in a non threatening way.  Another benefit is this is an exercise that can be done from a wheelchair (depending on location) that looks like fun.

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Friday, 18 April 2014

Something to remind me

If I had a photograph of you
It's something to remind me
I wouldn't spend my life just wishing

Lyrics from "Wishing" by "A Flock of Seagulls"

If you were to ask a group of people "what one thing would you save from our home in event of an emergency, after people and pets?" I bet photos would be a popular response.  Family photos are some of the most important objects to us especially as time passes by.  We frequently take photos for granted only realizing the importance when it is to late.  A loved one may pass away or life may not be as busy and we want to reminisce about the good times.  

When parenting and even more so when parenting children with special needs life gets extremely busy.  Life can also be difficult for your child and maybe you don't want pictures reminding you of the difficulties.  Maybe taking photos is just one more thing on your never ending list that easily gets overlooked.  It is extremely important to take the time to document your families lives with photos while you still have the opportunity.  

Having adopted multiple children over the years we have seen first hand the upset and disappointment of not having pictures of their past.  From just the general curiosity of what they looked like to the requiring a photo of themselves for a school assignment photos are important.  

When we are at an activity or outing we take pictures, lots and lots of pictures! We start taking them almost the second we arrive at the activity.  By taking many pictures there is a good chance of getting at least one or two happy ones.

Some of our children have some pretty significant challenges which makes going out difficult for them and we don't want their childhood remembered as tears and meltdowns.  When we get the tears and meltdowns we cut the event short so that the majority of the time is thought of positively.  So we try extremely hard to capture that happy moment even if  it's just one second and yes we have pictures of the sad ones also.

We use these happy pictures for social stories for the next outing, we also use them for reminiscing about the outing or activity.  Quite often after what we think was a negative outing our children come home saving how much fun it was and want to do "it" again so having one or two happy photos is important.  

Go dust off your camera, charge up the battery, and take some pictures of your family.  They don't need to be perfect, you just need to capture the moments.  

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Wednesday, 16 April 2014

Fish hatchery field trip

We have been raising salmon eggs that are now fry, as a culmination of our learning we went to a local fish hatchery and participated in a 3 part presentation with other members of our homeschooling community. Upon arrival we were divided into 3 groups and went through various stations.

The first station we attended was "ocean food web" at this station we learned how plants, animals, fish and the sun interact in nature's food web.  We were given different cards which included the sun, plankton, barnacles, herring, salmon, whales, eagles, etc. and learned how all these need one another for life.  To reinforce the "web" idea we had a string that was passed from one person to another connecting the different needs ie. plankton is food for herring, herring for salmon, salmon for whales.

Then we went on a "forest walk/fry release"  to learn about the various native plants and how they contribute to the rivers ecosystem.  We each released some Chum fry into the stream after learning what traits are needed for survival of the fry.
The last station was "aquatic insects/invertebrate" where we studied various insects that live in the waters around us.  At the end of the class we caught insects from the touch tank, studied and identified the bugs with the aid of a magnifying glass then returned them to the tank.
What a fun day of learning, spent outside in the sun with our friends.

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Sunday, 13 April 2014

A gold and 2 silvers

This weekend 2 of our children competed in a first aid competition that had multiple scenarios.  These 2 have been members of St John Ambulance for a few years and have been progressing with their skills over the years.  When the oldest first joined she was extremely shy and suffered terribly with anxiety and obsessive compulsive disorder(OCD), her anxiety and OCD was so debilitating that it limited her ability to participate in almost everything.  With time, patience and a lot of work she has overcome a lot, today she was able to lead her first aid team as they won 2 silver medals.

It was a "gold medal" for the younger of the 2 and her team.  This was the first medal she has ever won, they hadn't even finished calling her name and she was up on that stage ready to accept her medal.  When she got home she bounded up the stairs with such excitement recounting the first aid scenario and showing everyone her medal.

Three other siblings also attended this competition as spectators and casualties.  Being a casualty is exciting as there is a make up crew that makes you look as if you have life like injuries and you get to put all your effort into your acting skills.

A club like St John Ambulance that teaches and practices first aid week after week is great especially for children that need structure and routine.  They are taught first aid progressively and practice building routines, yes the scenario changes but the steps remain the same. In our family with so many medically complex children having just about everyone with first aid skills is a huge benefit.  It is true that not all can independently put these skills to work when required but as with any group there are leaders and they can encourage followers or know how to handle distractions.

Saturday, 12 April 2014

MS Walk

This weekend we are participating in the local MS walk/run  which is an annual event for our family. Our teens have been out in the community collecting donations for this cause, some of us will walk/run at this event and others will volunteer doing first aid, setting/cleaning up or working at the check in stations.

For us, volunteering is a way of "life" we want our children to grow up learning to give and not expecting to receive everything.  All of our family is raised this way know matter what their challenges/circumstances are. Check out this link  if you are interested in participating.

The MS Walk

Every year over 40,000 Canadians in more than 160 communities across our country lace up at the MS Walk to raise vital funds for people living with MS.
This family-oriented, community-supported event offers walking routes of varying lengths – including a wheelchair-accessible route – and features start/finish line activities such as inspiring words from MS Ambassadors (people living with MS), entertainment, team awards and more.  

Friday, 11 April 2014


With 2 children with high special needs fast approaching adulthood we have been busy working on accessing adult services.  Finding adult services is similar to youth services in the fact that they all seem to be "top secret".  It baffles me that information about the various supports available are not readily accessible, you would think that the services for people with special needs would be easy for these individuals to find.  I totally understand that each service provider is trying to protect their budgets but really it should be easier.

When we are planning out activities for our young adults we need to consider the fact that they need a (competent) adult with them at all times.  Although these 2 function much lower than their chronological age they see their peers going to college, getting jobs, and becoming more independent and have visions of themselves doing these things also.  With these 2 challenges we have our work cut out for us as we try to come up with a plan that meets their needs and dreams.

We have applied on their behalf for a disability pension that they meet the requirements for and we are working on "community living" supports however this is just a fraction of what we envision for our young adults.  We want them to have activities to do each day, we do not want them sitting watching television or playing video games all day long.  The other thing is, as wonderful as special needs programs are we want our children to also participate in some activities with the general population.

Our first step is finding "work" this could be paid employment or a volunteer job or a few volunteer jobs.  One issue when looking for employment paid or volunteer is that our young adults fatigue quickly and may not be able to work full time, also it can be very draining for the employer working with them so a short day once a week may be more successful.  We also want to find something of interest that each young adult can feel a sense of accomplishment from.  This is where the work for us begins because it's not like working with our typical children that can go out and make a life for themselves.

Our daughter envisions herself being a famous singer or actress and she would also consider being a first aid instructor.  These dreams are beyond her current reach so its time for some brain storming.  We are looking at her current hobbies, interests and activities seeing what can be expanded into an "adult plan" as high school will be coming to an end.  She currently volunteers at "therapy" for a couple hours per week where she cleans the equipment and does a bit of office work.  Working/volunteering at a place that provides therapies for people with special needs works well because they are already used to dealing with the challenges she presents.  Numerous members of our family volunteer at St John Ambulance and this is why she thinks being an instructor is a good idea.  She is unable to do the activities the other members are doing but after some brain storming we found that they need a person to restock the first aid kits on an ongoing basis.  With us going in and photographing everything and making up a visual for her this helps her to be successful with the task.

Our son enjoys/needs physical labor but requires a lot of guidance so finding opportunities for him takes looking in a different direction.  A neighboring community has a small museum that a group of senior males volunteer at doing repairs and maintenance.  After us approaching them they have agreed to have our son work with them one morning a week.  A friend has a landscaping business that requires laborers and as full time would not work she has agreed to having him on call.  We have worked with her discussing what his challenges are and what makes him successful.  She knows he needs support preparing for work and doesn't have the skills for planning ahead so we work with her.  When she wants him to work she schedules that with us, we work with him ensuring he packs and wears appropriate clothing for the job, has his safety gear, brings a lunch with water and arrives on time.

Finding work/volunteer activities for our soon to be adults is a challenge and time consuming but having done this with another adult child we know the many benefits to the child.  This will be a great confidence builder for them and as their skills increase they may be able to do more and hopefully eventually support themselves.  Having our young adults out in the world also opens more doors for them as others see them being successful. Another benefit is that them going to "work" provides the competent adults to look after them so we as parents are not needing to be there 24/7. I look forward to your comments please let me know what opportunities you have found for your children and how you make it successful for them.

Stay tuned for more posts on adult supports/life for our young adults.

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Thursday, 10 April 2014

Anything but clothes!

Today my daughter and I were getting creative!  She is participating in a fundraising fashion show benefiting  a classmate that is in need of a lung replacement due to cystic fibrosis.  At this fashion show they will be wearing outfits from various local business and they also will be wearing an "anything but clothes" outfit of their own creating.  Each participant is free to be as creative as they would like the options are endless - party supplies, pencils, straws, flagging tape, disposable cups, etc.
Are chosen medium is a space blanket with the support of duct tape and double sided tape.  We started with an old t-shirt and taped/reinforced a cut line down the back of the t-shirt for getting out of the outfit when complete.  We then taped the bodice for shaping and support.  The next step was to tape a black garbage bag to the bodice which will provide modesty if the foil tears while walking on stage.
  Once the foundation was made we added the space blanket. Twisting a long narrow strip of the blanket we centered it at the top of the  bodice and secured it using 2 sided carpet tape. At the back we left the long lengths to tie into a bow which helps disguise the opening.
We then used more 2 sided tape at the waste and added panels to make the skirt.  We used more 2 sided tape to seam the panels together.
We cut off the additional length to make the dress the desired length.  Used more 2 sided tape to secure everything where we wanted.  Once we had the desired look we cut off the parts of the t-shirt that were not required in the dress and cut an opening for getting the dress on and off.

And the grand finale the completed dress, ready for the dress rehearsal

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Tuesday, 8 April 2014

When traditional swimming lessons aren't enough

The kids have been busy learning to swim which has been proving to be a very labor intensive endeavor for some.  Learning to swim has always been a priority for our family especially since we live at a lake.

With many of our kids they took swimming lessons each summer of their childhood in the lake.  Our community has a section of the lake that is like a "pool" with a wharf around it, a slide, diving boards and life guards/instructors. At the beginning of summer each year the water was always freezing cold so the children would have hot chocolate after each class and by the end of summer you had trouble getting them out of the water.

For some they also participated in a recreational swim team during the fall/winter/spring at a local indoor pool. Practicing weekly for 2 plus hours each session really increased their swimming skills.  We would also visit different public pools for family swimming.  With all this swimming all but one became very competent swimmers and then we adopted our sibling group of 7 which are proving for us that swimming is a challenge.
We have needed to change how we have been teaching swimming as we have 8 children struggling to learn.  Our almost 19 year old has been taking multiple sessions of lessons every year for 13 years now and still struggles to get across the width of the pool.  When she gets tired she just stops swimming, she does not have a fight or flight reflex so when combined she stops swimming, she sinks to the bottom of the pool and then needs to be rescued.  Unless she has someone directly with her she must wear a life jacket so she can happily bob along in the water.

The other 7 children all have uncontrolled seizure disorders along with a multitude of other challenges and are still relatively young.  Of this group the 5 that are being home schooled plus their almost 19 year old sister are currently taking semi private swim lessons.  With a few phone calls (actually quite a few) we were blessed to secure the ultimate lesson set up for this group.  Our 6 children (assuming they haven't had a seizure yet that day) are the only people in the pool with their 3 instructors.  This set up has been working amazingly well as the kids are being well supported, they aren't as overwhelmed as they would be at a busy pool and they are having fun with the hope of learning how to swim.

When planning activities for your child (especially if they have special needs) think outside of the box.  If something isn't working talk to people and see if you can find a solution that works.  Don't give up keep trying!  Please comment and let me know of different solutions that you have come up with for things that weren't working for your child.

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Thursday, 3 April 2014

Keeping the spark alive - don't let the inferno of life take over!

With the many demands on parents it is easy to loose sight of how important it is to nurture your relationship with your spouse.  Divorce rates in general are high but then you add additional factors like parenting 1 or more children with special needs or raising a large family the risk of divorce increases.  Children require a great deal of attention and as parents it is easy to focus so much on the child's needs that we loose sight of ourselves and our relationships.

My husband and I, like most parents, are extremely busy with the regular day to day activities of working, keeping up with household chores, making meals, schooling the kids, after school activities, etc then on top of that you add everything that goes with raising children with special needs.  With all these demands it is not uncommon for parents to give up on time for themselves and their spouses.

Knowing that you need to work on your relationship and take care of yourself is the easy part making it work can be very difficult.  Currently we have a child care person come in once a week so my husband and I can get out for "date night" and many nights when date night rolled around after the placement of our youngest 3 children all we wanted to do was sleep.  On more than one occasion my husband or I would verbalize "do you think we should just go out to the travel trailer and have a nap".  As tired as we were we made a commitment to one another to make time for us.

In an earlier phase of our life we were parenting children with severe emotional issues that limited our ability to hire a child care professional, we could not find anyone willing to care for the children.  During this time we had to squeeze in time for us when we could.  This meant when the children were at school we would meet up at lunch break for a quick date assuming the school hadn't phoned suspending anyone.  Or we would sacrifice sleep and make an extremely late dinner.  We would have the kids involved in activities and on a really good day they would participate in them and we might be able to squeeze in some time.

Whatever you are going through in your parenting path right now find ways to connect with your spouse.  Get up early for a cup of tea or coffee before the kids get up, phone or text to say how much you love and appreciate them, schedule regular dates, do little things to make your spouses life easier, make time for one another. Remember when the kids are grown you still want to know that person who is sitting across the table from you, so keep the spark alive.

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Tuesday, 1 April 2014

What have we been learning at school?

A glimpse of what the older kids have been working on during the last term.  We study the basics each morning and then add a unit study to bring our learning to life and make it a bit more interesting.  For our unit study we have been reading the "Sign of the Beaver" and studying various topics brought up in the story around aboriginal people and their culture.  We are also using Northwood Presses - Native curriculum here  We also included some aboriginal hobbies/art for our art class and some cooking.

The "Sign of the beaver" tells a story of a 12 year old boy Matt James Hallowell, and his father, who, as early settlers, together build a log cabin in the wilderness of the 18th century North America.  Matt is left alone to guard the cabin while his father heads back east to collect his mother and sister.  Alone, Matt has to work together with native Americans.

In the story the characters hunted and gathered their own foods so we researched ways of hunting, snaring and fishing to gather food.  We all tried making snares for catching small game.  We also researched edible plants and went into the forest and identified them.

For cooking we made some "Johnny Cake" which is a type of cornbread.  Most of us found it to be very dry and bland.

We read about a bee attack in the novel and researched remedies that the aboriginal people used for a variety of alignments including healing bee stings.

We studied kayaks and learned that the Inuits were the first to invent them, when they invented them, what they were made of, etc.  We also learned that the Europeans kidnapped the Inuit and had them make kayaks for them based on the Inuit sketches.

For the art aspect of our studying we did some soap carving with guidance from the book  Soap Carving for Children This book teaches how to make carving tools out of popsicle sticks and then teaches how to carve using bars of soap.  We also made moccasins from kits that we purchased from here

We studied the homes of aboriginal people and made models of plank houses and demonstrated the different parts of the house.

For our final project/report each child chose an aboriginal band to study, report on and present to our family and friends.  Each child was given free rein on how they wanted to present their research one did a power point presentation and 2 did poster board presentations along with an oral presentation.

A field trip to the Provincial Museum finished up this terms studies in the First Peoples Gallery.  The museum has a handout with questions that can be answered from information presented in the displays which was a great encouragement for the children to read and learn from the displays.

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