Finding support in the community

7 of the kids and I recently had the opportunity to attend the movie "Kung Fu Panda 3" hosted by the Canucks Autism Network.  The Canucks Autism Network supports individuals and families effected by autism by providing sports, recreational, arts and social programs for individuals and families living with autism in communities throughout British Columbia.  They also promote awareness and training regarding autism and have a library of resources available to support families.

The movie was the first event that we have attended by this network and I was extremely impressed by them.  There was no cost involved for anyone wishing to attend this event, including free popcorn and a drink, but even more importantly they had autism staff willing and available to help with any needs.  The movie was played at a quieter volume, they kept a low level of lighting on during the entire show and they did not play any previews which limited the time patrons needed to sit and watch the movie.  The autism network also includes all family members including siblings that do not have a diagnosis which is a tremendous benefit to us.  In our family 3 children are diagnosed with autism however many others have challenges that benefit from extra support and this is an enviroment where they would not stand out.   Other activities hosted by the autism network do have minimal costs but they appear very reasonable and family friendly.  We are hoping to get more involved with them in the near future.

Scarce programing for special needs leads to creative thinking!

For most having a child become an adult is an exciting time with the young adult venturing out into the world and thoughts of an empty nest for the parents.  When your child has special needs this can be a very challenging time, now what are they going to do?  We now have 3 in this category and it's difficult, the schools, clubs and activities they once attended no longer welcome them as a participant now that they are an "adult".  They don't have the prerequisites required for college, university or a job.  Their peers are venturing out, starting their adult life while they are at home wondering what has happened.  With the current state of funding being cut and not enough resources to go around we have needed to be creative and combine options to help fulfill our children's days and our requirements.  We have a rule in our family that you are up by 7:30am during the week and doing something productive that does not include video games, television or naps.

For 2 of our adults we were able to take advantage of the extremely well hidden information in the provicinal education program policy. (I really recommend reading the policies of any program your children are in and make sure you know your rights and options)

 To be eligible, Adult non-graduate students with special needs must be working towards goals set out in their Individual Education Plan (IEP) and:

• have been reported on the Form 1701 in the prior school year (i.e. they are continuing their K-12 education program uninterrupted from when they were still school age), and;
• be continuing their program at the same school (i.e. they are continuing their K-12 education program uninterrupted at the same school leading towards a B.C. Certificate of Graduation, the B.C. Adult Graduation Diploma or the School Completion Certificate Program from when they were still school age).

The public schools around here usually fight this policy but being a homeschool family this enables them to continue having a funded education support person (at home), therapies and programs.  The policy doesn't state a time limit and we are currently on year 2 with one adult and hope to continue as adult special needs funding is scarce for other programs.  In addition to school funding we were able to secure a position for one adult in a day program twice a week, another adult was able to gain funding for a support person for 12 hours per week and the third adult we are still working towards funded support.

We have decided to mix up their learning this year to reflect their desire to earn and income and continue learning the K-12 education.  With their support workers/education assistants we are working on income generating projects, for the last month part of the day includes craft making and attending various craft fairs.  With the help of Pinterest I have been able to come up with crafts that don't take a huge amount of skill or expense that have become profitable.  With the speed that our adults work and their limited abilities they will not be able to earn an imcome sufficient to live on however they are able to earn spending money and have a huge sense of accomplishment.  The adults are making projects, working out costs to produce items, figuring out mark up and determining a sale price.  They are also working on their social and sales skills while at various craft fairs/markets and also handling money and making change.  Bread making is another venture we are trying with the hope of selling to friends and family and in the spring we hope to add a gardening unit.

Do you have any business or employment ideas for the unskilled and in need of one on one support individuals?  What are your adult children doing during the day?

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.

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.