Secret shopper, the hospital version

If there was ever a job similar to a "secret shopper" but for people spending time at hospitals I think that it might be up my alley.  In the last week I have spent substantial time at 3 different hospitals in 3 different cities.  Fortunately most of our time spent at the hospitals was for scheduled appointments and not a health emergency.  Our more complex sibling group have never ending medical appointments and it seems that every time they see a medical professional at least one of them is referred to another doctor, for another procedure or is given a new diagnosis.  I really had thought this would have slowed down by now as they have been "home" now for 8 years, however it seems that the more we know the less we know.

We are constantly working too provide some sense of a normal childhood into our kids lives, which for us means really focusing on taking time to play between all of the appointments and procedures.  One of our recent hospital visits was over 3 days so we decided to make it into a mini vacation.  We booked 2 hotel suites too accommodate the 12 of us, prepared some meals in advance that we could throw into the crockpot we packed with us and headed off for some fun.  When one child had an appointment we took turns supporting them while the rest of the family swam in the hotel pool or went to a local playground.  After the appointments one day we visted Science World, another day we visted the local Aquarium and each day we spent many hours in the hotel pool, which we had to ourself each time, to the delight of the children.  Having all this fun planned also helped ease the anxiety for the child with the appointments as it gave them something else too focus on.

Our drive too provide some normalcy in the children's life has been reinforced after speaking to a few people who grew up requiring many medical appointments/treatments.  My father in particular tells stories of the adventures him and my grandmother would have when they needed to travel to the "city" for his hospital visits.  I hope my children can tell similar tales, with fond memories, to their children when they are older.

If you have a child that requires multiple appointments and hospital visits what do you do too provide a sense of normalcy?

Hiring staff, avoiding criminals

This year it has been a revolving door with our support staff.  Our well loved interventionist and support worker (she did 2 jobs) went off too complete her masters in Physical therapy, which is amazing for her but not so much for us.  Also one of our Special Education Assistants got a new position elsewhere and another interventionist also left for more schooling.  This left us needing to fill 4 positions, fortunately our duaghter, who just completed university, filled in temporarily for a couple months which was a huge benefit as she was able to assist with hiring and training but now she is off to her new job.

Advertising, interviewing and hiring is always challenging but even more so when you consider we are looking for someone to work with our very unique family with 10 special needs children, currently at home.  We need someone who will work well with our children, support them in successfully meeting their goals and work well with everyone.  When we started our parenting journey the most we every needed to do was hire a babysitter here and there.  Now that we are homeschooling 9 special needs students, 4 with autism (on top of their other challenges), and have 2 adults requiring support workers it feels like we are running a big business.  We are extremely thankful that we have the ability to hire and set up a program to aid in the success of the children but sometimes it is challenging.  We have had people applying with none of the skills we are looking for, we have had people not show up for their interview, we have had people accept our offer for employment only to quit before acctually starting, we have had no suitable candidates apply and needed to keep looking and we have had some very skilled prospects.

When looking for employees we use word of mouth and also post ads online describing the position available, education and experience we are looking for and request a resume and cover letter detailing everything.  We use these to determine who we consider doing a preliminary phone interview with, before setting up an official interview.  During our phone interview we give more details about the job, tell them about all positions we have available (just in case one person could do multiple positions reducing the number of staff), tell them where we are located as sometimes this is an issue and get a brief sense of who they are.  At the official interview we meet at a local coffee shop so the interview takes place in a neutral location which has proved to be very beneficial as some people you just don't want in your home or life.  During the interview this time is more about getting a sense of who the individual is and whether or not they would be a good fit with our family.

After the interview we do reference and background checks including a criminal record check with vulnerable sector screening.  This is a huge must for us and was reinforced for us when we were hiring a particular instructor and he strung us along as we discussed what we were after, scheduled days, up until the finalizing of details where we asked for the criminal record check that we had previously discussed and then he told us that a "court order prevented him from being near children".  We do realize that this does not screen out all problems but it does screen out the ones that have already been caught.

So as of today we have all our support positions filled and we can focus on our day to day learning, as well as the learning curve of having new employees.  This could change tomorrow but today we will accomplish as much supported learning as possible.  How do you find amazing support staff for your special needs individuals?

Lights, camera, action it's time for social skills.

Over the years a few of our children have had the opportunity to participate in community theater and most recently one of our daughters has been playing the part of an "orphan" in the production "Annie".  Theater has been such an amazing opportunity for all of our children and especially helpful for the ones with special needs effecting their social abilities.  To many of us, with or without special needs, the thought of acting, of standing in front of an audience, playing a role, speaking lines and wearing a costume is far from our comfort zone.

Social interactions can be difficult for some and it's easier when you know what you're supposed to say and know what the expectation is.  In acting out small scenes, they learn appropriate responses to certain social situations and get to try out various scenarios without embarrassing themself or offending anyone else.  They also get to witness first hand how people react to inappropriate responses and understand the reasoning behind their reactions. This was a huge lesson for our daughter as she was able to memorize everyone's lines in the play and if they didn't remember or say their lines fast enough, for her liking she would say them, then give them a look, like what's wrong with you?  Working with an entire cast, she learned that the whole show was not about her and how well she knew everybodies lines.  During theater people must work together to accomplish a common goal.  They learn how to communicate, how to look at another person while speaking and how to convey a positive message through their body language.  Acting gives people a means of escape; they learn how to express themselves in a variety of ways.  Basically, acting is all about learning social skills.  These social skills are practiced in rehearsal and then put on display during the actual performance.  For example, a child learns to speak up so that others can hear him or her.  They must have conversations with others and do so in a socially appropriate manner.  These are all life skills that they can then take to everyday life.

With theater and musicals also comes a lot of singing which teaches children how to articulate and project their voices.  When our daughter started theater she had no trouble projecting her voice in fact she felt that she needed to be the loudest and drown out everyone else, no matter how bad her voice sounded from the strain of yelling.  With time, practice and some singing lessons she has become a great singer that can sing well with others.

Physical coordination has also been a challenge for our daughter and with practice she has increased her ability to use gestures to convey a message, move around the stage in a natural manner and even dance some basic steps within the plays choreography.

If your child struggles with their social abilities I would strongly reccomend looking into theater as a means of improving some skills. We were fortunate to find a community club that could accomodate us however some communities also have programs specially designed for people with special needs.

A s**tty, dumpster diving, ambulance ride kind of day.

Some days just don't go as well as planned, or hoped for, and in the life of special needs parenting the realities of life can be quite different than what most people experience in a given day.  I don't know if it's the recent full moon or what but some of the children in this house have been way off, and their behaviours have just been bizarre.

Yesterday morning when walking into the youngest boys room there was the undeniable smell of feces, the stench was way worse than anytime they have both soiled their diapers overnight.  It did not take much investigation to determine a certain young man had been extremely creative with his feces, he had thrown it and it was stuck to the ceiling, he had finger painted everywhere with it - on/in his bed, on all of the walls, all over the carpet, on the door, on himself and all over his brother and his brothers bed.  There was feces everywhere, it is actually hard to believe that all that feces came from one small child.  I then started the cleanup which started with bathing the 2 young boys - both have severe sensory issues and bathing them is similar to trying to bath a feral cat.  Then onto the clean up, all the walls and ceiling needed to be sanitized.  All the bedding was put into the washer on the sanitary cycle and it was determined both mattresses were beyond ever being cleaned and needed to be replaced.  The carpet cleaner we were planning on buying in the future was also needed immediately to make the room habitable once again.  While all this was happening you would expect that the guilty party would be remorseful or even realize what he did was wrong but this child does not comprehend this at all.

Even after all of this, you should never think "your day can't get any worse or more bizarre" because around here an adult child, after eating a very large lunch is caught going through the dumpster, looking for food and then caught eating food that has gone bad.  He is not eating said food because there is a shortage or because he is hungry, it's because of his lack of impulse control.....he saw it so he must do it.

During all the day's events I was also receiving texts from another adult that struggles with mental health issues, especially when a stressful situation happens, and today he got a phone call regarding his outstanding phone bill.  This stressful situation resulted in texts throughout the day like Ï am done with life", "nothing in my life works out", "home and safe", etc.  Knowing that he can overwhelm extremely easily I respond with very simple, positive responses as that is all he is able to take in.  I tell him to use his tax return money to pay his phone bill, a simple manageable solution.  When I return home from purchasing the new mattresses and carpet cleaner, I ask him about his day?  He is still worked up and has a complete meltdown.  Hitting himself, clawing at his face, crying, destroying his sunglasses and saying he wants to kill himself.  I ensure all the younger children stay downstairs watching a movie with their older sister so we can deal with this young man without scaring anyone.  As he says he wants to kill himself, hubby phones for support, and the police and ambulance arrive quickly.  He agrees to going to the hospital and seeking more help (he has already been seeing mental health and getting support for a while now).  We call our amazing and very supportive respite provider and she comes to watch the younger kids, hubby continues with the planned activities with the older kids, and I spend the evening at the hospital helping our son be heard while he seeks more professional help.  Before leaving for the hospital I take time to ensure everyone is okay, the younger kids don't seem to notice that their brother left in the ambulance between the movie and excitment of the babysitter coming over and I talk with the older children as to why their brother is going for more help.

After all of this our son is released from the hospital with a new plan.  We are both starving so we grab take out, I send our son in to get the food so I have time to phone hubby taking time to lean on each other for support.  With these kinds of days, which fortunately don't happen often, it is important that hubby and I take time to look after ourselves and our relationship.  It's also a huge relief that we have built supports and plans that work to help us through these situations reducing the stress for everyone involved.  

Puberty, cognitive delays and a CSI crime scene!

A friend was recently telling me about menarche parties, a party for young girls to celebrate their first period.  Not thinking that this was a real thing I did a bit of "googling" and I found this description "The occassion of an adolescent girl's first period is often a very embarrassing and scary time, even if they have been prepared for it by their parents.  One way to lighten the mood and celebrate this momentous time in your daughter's life is by having a first period party.  It can be difficult for young girls and even women to get excited about something that brings both blood and pain, but having a period party can be a great first step towards her being able to embrace her period and its significance as the beginning of her journey to womanhood."





Around our house we don't have a party and it is more like a situation of drawing straws between my husband and I.....whoever gets the short straw gets the never ending, daunting task of teaching and helping the young adolescent with cognitive delays cope with the changes his or her body is displaying.  This teaching may need to happen for years according to some of the examples in our home, we are at 10-14 years (since puberty) with some and don't seem to be getting any closer to independence.

First up is the "stench" of the adolescents and the increased need for personal hygiene.  We have gone through puberty with multiple children and it seems the ones with cognitive challenges either don't realize or care that they stink!!  Without constant reminders of, you need to shower, please put on clean clothing and put on some deodarant, our home would constantly smell like a middle school boys locker room.  We have visual schedules that are used, charts detailing how to do various tasks including showering and changing sanitary products and it's still never ending.  Each morning during "work out time" we need all the windows open and a gas mask would be beneficial.  I don't even think one of those "Febreeze" commercials could help this situation.

Then for the girls there is the need for a bra, which sneakes up so fast that they may not have even mastered the finer points of dressing, such as buttons and zippers.  Bras can be extremely difficult to put on and if your daughter is blessed with a large bosom she will have even more of a challenge.  We start with sport bras and buying mutliple of the same style to limit the learning curve.  You can read more about our bra challenges here.

Then there is menstuaration and the need for the use of sanitary products.  This one is huge and one that you wouldn't think you should have to constantly be involved in.  Over the years we have determined sanitary pads are what will be taught in our home and if you have the desire to use something else you will need to figure that out on your own.  We did try tampons with one, so she could still swim, when the tampon fell out and landed on the pool deck without her noticing (Dad had to say "you dropped something") not swimming on those days was a better option.  We also have to track the menstruation so said individual doesn't think "I will just wear a pad" because I really want to go on the water slides today, leaving a pad stuck on the inside of the water slide ready to greet the next person.  There has also been the ongoing lesson of where it is acceptable to change your sanitary products and how often it should be done.  Then there is the mess that is left when they are working on independence of looking after things themself.  Why does the bathroom look like a vicious CSI crime scene each time they finish?  Lysol wipes are a constant requirement in our bathroom between the ones being potty trained and the adolescents.

Do you have a successful method for teaching the finer points of becoming an adolescent/adult?  How do you manage these challenges in your home?

Making some dough....$$$$

Each week one of our young adults has been taking orders and then producing bread for sale. Earning her own spending money is the driving force behind this business venture.  With the help of a support person, usually Mom, she has been able to produce up to 8 loaves of bread in a day.  This weeks bread is a favourite with the customers and is delicious paired with homemade soup.

Rosemary Bread

Ingredients
2 tablespoons white sugar
2 cups warm water
4 1/2 tsp active dry yeast
2 teaspoons salt
4 tablespoons butter, softened
4 tablesppons rosemary
3 teaspoons Italian seasoning
5-6 cups all purpose flout
Olive oil to grease bowl and loaf pan.

Dissolve the sugar in warm water and mix in yeast.  When yeast is bubbly mix in butter, rosemary, italian seasoning, salt, and add flour gradually to form a workable dough.

Coat the inside of a large bowl with olive oil.  Place dough in bowl, cover and allow to rise 1 hour or until double in size in a warm location.  We put in oven with the oven light on.

Punch down dough and divide in half.  Place in a greased loaf pan and allow to rise until doubled in size (1 hour).  Cook at 375 degrees F for 15 to 20 minutes or until golden brown.

The bread making has been teaching many skills and some have been easier to learn than others.  She has learned the importance of accurate measuring when one loaf came out like a rock.  A lot of math skills are being taught between measurements, costing out ingredients and determining the cost per loaf, and money math when selling the loaves.  Social skills are being taught dealing with customers between taking orders, filling orders and talking up her business.  There is also the much needed hand and arm strengthening (OT benefits) that has been happening from mixing and kneading the bread by hand.  Our baker has a terrible work ethic that we have been trying to rectify and probably the most shocking lesson of all was when she woke up "oh so sick" and decided she couldn't possibly make bread and the customers did not pay....she honestly felt the customers would giver her money even if they didn't get their bread.

Is a movie being filmed here

I was out picking up a few groceries and noticed 2 young moms, each with an infant in a carrier, having what looked like an enjoyable evening together getting their groceries while spending time with one another.  The infants were both content in the carriers while the moms shopped and chatted in a relaxed fashion.  This got me thinking how different my life is in comparison and what it would look like if I went shopping with a friend with a similar family dynamic to my own and we each brought our children that couldn't be left at home unattended.

Instead of pulling up in a compact car together we would need either a full sized bus or we would need to each arrive in our indivdual smaller buses.  One or both of us would probably be late because some child emergency would probably delay us.  Once we both arrived it would take a while to get out of the buses between unloading the wheelchairs, finding the socks and shoes and putting them back on the children that felt it necessary to take them off and throw them as soon as they got into the vehicle and checking that all the children (4-6 for me and probably a similar number for her) who wear diapers were clean.  We finally get organized making sure we have someone assigned to push each wheelchair and the multiple shopping carts we each need for a weeks worth of groceries, when the children that struggle with transitions would start acting up as we headed to the store.  A couple with sensory issues would be upset because it is raining or windy or the sun is to bright and it is making them uncomfortable walking to the store.  We would finally herd everyone into the store when the fun would begin.  People would be staring, others would be counting, we would be asked if we are a school group or a daycare and someone would ask if they were all ours.  We would be filling our carts and, being we were 2 large families, we would be clearing the shelves like the "Extreme Couponers" just to get enough to last the week.  The first product sample clerk that sees us is swarmed by the 30+ of us and doesn't have enough samples which sets off a raging meltdown or 2 or 5 from some of the kids.  The other product sample clerks are trying not to make eye contact with us while others are being warned by their manager to shut down quickly.  We continue herding the children through the store, not having that enjoyable time that the 2 young moms seem to be having, barely being able to speak to each other except to ask have you seen Billy, where did Mary get to, Johnny put that back.  Then one child says "I need to go to the bathroom... NOW" so we need to park the carts while we all rush to the bathroom which takes up a good 45 minutes because we are here and everybody better try and go.  While in the bathroom we have more sensory challenges and a few tears.  On the way back to the carts some get distracted and want to look at the toys.  We finally get back to the carts, kids are complaining "I don't like that" others are saying "I want this".  People are still staring, some are shaking their heads while others give us parenting advice.  We finally have what we need for the week or at least enough to get by for a day or two because we are exhausted, so we head to the check out with our overflowing heavy carts.  The clerks all look in horror as they see us heading towards them on mass, we pick our line and all the kids are trying to empty the cart, throwing everything onto the belt.  There is pushing, shoving, crying because "I wanted to do that one", the eggs get dropped, we need a clean up on isle 1.  Our groceries are finally all rung through and it's time to pay, the bill is over a $1000 but that's just life in a big family.  We get back to the buses start loading up the kids, the groceries barely fit and give each other a brief hug while swearing we will never do this together again.

Time to talk?

Recently it seems that there are more and more articles in the news of parents murdering their child/children and then sometimes committing suicide themselves.  I find it extremely heart breaking that people are feeling that lost, overwhelmed, troubled or however you would like to describe it that they feel this is their best option.  A lot of the stories I have seen recently the children have special needs and sometimes one or more of the parents also have health challenges, I totally understand life can be hard, parenting can be hard, parenting a child with special needs can be hard but murder and/or suicide are not the answer.  

In this article  it appears that the mother in question, suffering from a terminal form of cancer, felt she was the only one capable of looking after her daughter.  When she no longer felt she had the health to care for her daughter she murdered her and then died herself leaving the rest of the family to greive the loss of both of these women.  We as parents need to remember that we are not the only one capable or willing to care for our child or children no matter what their challenge is.  It is very true that some children require more support than others but believe me there is always someone willing and able to do what you and I do.  

Another story tells of a mother that may have had mental health challenges or was just completely overwhelmed with the stress of raising a special needs child, being married to man with increasing disabilities and a recent blow to the family budget.  Did this women reach out?  Did anyone notice her struggling?  Could the death of this child have been prevented? 

I would like to encourage everyone to look out for your friends and family.  Be there for them to lean on if they seem to be struggling and encourage them to seek help if life seems more than they can bare. Don't judge, just support, the way each of us handles stress will be different and it doesn't matter as long as we all feel loved and supported.  Some people are affected by stress more than others and what you may think is nothing could be huge for someone else.  

If you are struggling, overwhelmed, feeling lost or hopeless please reach out and get help!  Murder and/or suicide are not the answer. Talk to your doctor, talk to a family member or friend, contact your local mental health clinic, talk to anyone willing to help, if the first person you speak to doesn't help find someone else and keep talking.  Seek a safe place for your child/children until you have recieved help and you feel that you can carry on.  Maybe you need a small break in the form of respite or maybe parenting is just to much for you, that is okay. Ask a friend or family member to care for your child, go to child protective services, just find someone to care for your child until you are able to carry on.  There is no shame in admiting you need help and then getting the help you need! 

Modified or adapted, decisions to be made

Recently reviewing our children's school progress we had to make the hard decision of changing one of our daughter's from an adapted school program to a modified program.  We have had to make this decision with other children in the past and trust me it doesn't get any easier making this type of decision.  When a student works on an adapted program they still have to meet all the same learning outcomes but they can be presented in different ways.  If a child can't complete the work with adaptations then they can be on a modified program.  School work that hasn't built on what was learnt the previous year is easier for the child to complete in an adapted manner as there isn't any real concern from some teachers whether or not the student is retaining what is taught.

Having spent many years with children in the public school system, where it was drilled into us, if we switched our child to a modified program they would never be able to go back to an adapted program and they would never be able to graduate from highschool added to the fear of making this type of decision.  The feeling of making a permanent and life altering decision regarding our child's education made it feel like if we decided modified was their best option that we were giving up on them.  Over the past few years we have been homeschooling and I have learnt that you can switch back.  In order to graduate from high school you must obtain a prescribed number of grad 10-12 credits or to obtain an adult diploma you need an even smaller number of credits.  This means there is still the possibility of graduating in the future even if a modified program is best today.  When you decide on a modified program at public school that usually means the child is placed in the resource room and their focus is on life skills (which would make it extremely difficult to switch back as they wouldn't be learning academics).  As a homeschool family when you decide on a modified program you have more say in what their curriculum will look like.  For our children on modified programs we want a combination of academics and life skills.  For them it takes a very long time to learn and I would prefer for them to slowly master skills rather than breeze over things with nothing sinking in.  With a few of our children we have been working on kindergarten to grade 1 learning outcomes for 3-6 years, we use a variety of approaches and are seeing slow steady progress (minus the seizure setbacks).  The most recent convert to a modified program can read quite well but struggles greatly with comprehension,written work and mathmatics, by focusing her work to her level we are hoping for steady progress.  It was a harder decision on whether or not a modified program was in her best interest because she does have more areas of strengths than some of her younger siblings but having some older children with gaps in their learning from being pushed through we decided this would be best for her.  For academics her focus will be on language arts and math bringing in a bit of science and social studies as a means of learning these subjects. Her academics will be much lower than her peers but I am confident with time she will be able to graduate with an "adult diploma".   Singing, piano, trumpet and drama will continue as these are a passion of hers.  Life skills will fill up the remainder of her school day not be the focus of her modified program.

A modified school program can be tailored to your child it doesn't have to be all or nothing approach. Some of our  modified children likely will not graduate but they are still given the opportunity to learn academics along with their lifeskills and hobbies.  Learning should be fun and ongoing not limited because you couldn't master a skill within someone else's timeline.

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.

A team of their own!

A few of our younger children have significant special needs and haven't had the opportunity to join any sports teams or clubs until recently.  Our local Special Olympics recently started a program for 2-11 year olds (Active Start and Fundementals) and 6 of our kids in this age bracket have had the ability to join.  The first practice was on Monday and the kids were extremely excited.  Special Olympics set up the group with a "sports team" feel and all the kids received team shirts to wear for each practice.

They now have their own sports team! I was really hoping that there would be many other kids for them to meet and interact with while learning new activities and maybe in the future there will be but unfortunately there is only one other child so far.  One of our teens came to watch her sibling and thought it looked like so much fun she signed up to be a volunteer.  I am always impressed by the support the children show for one another and their various interests whether it's volunteering at their activities or being the best cheerleader imaginable.

At their "team practice" they do a warm up, then play games building different skills which nicely align with the goals their physical therapist has for them, have a healthy snack and then a bit of free play.  Yesterday they did circuits with various jumping skills, practiced throwing, catching and kicking balls, and played games with simple rules like duck, duck, goose, what time is it Mr Wolf and a variation of tag.

I am so impressed with Special Olympics we have adult children that have been participating for the last 2 years and now the younger children have a group for them.  The skill and dedication of the volunteers amazes me and I am truly thankful that these people include my children.

One persons dream can be another persons (or cats) nightmare!

Oh why do I torture us, one of our daughters has visions of herself being a professional singer/song writer and another daughter has been in one theater production and would like to continue with other productions which has resulted in them both being signed up for voice lessons.  Both girls are beyond excited about their singing lessons with the oldest (our wanna be singer/song writer) telling everyone "she can't believe it, this is the best day of her life and her dream is finally coming true".  One of the challenges we face with this daughter is her lack of insight to her abilities, this girl can't sing.....at all.  When she sings at home the cats run from the room, then avoid her for days and while I was waiting for them at their first lessons all the neighbourhood dogs were howling.  I know many people can't sing, myself included, but most people realize the fact they aren't skilled in a particular area and don't plan their life goals around said activity.

When looking for a teacher we needed someone skilled at working with individuals with special needs, encouraging but able to set realistic goals and skilled in voice training.  It is extremely hard working with someone that has such grand visions for them self.  If friends or family say anything about her lack of ability she gets upset, cries and tantrums because she feels everyone should be encouraging and how could they possibly be that rude.  We have recorded her singing and played it back hoping she might "hear" what we "hear" but that hasn't worked.  Frequently we have general discussions how sometimes we have hobbies because we enjoy doing a particular activity, also just because we enjoy doing something doesn't mean we have the skills to do it as a career.  We have also tried the approach of having her consider her friends and asking what type of careers they have?  As they don't have careers (most are in day programs like her) would they still be as close of friends if she went of and became a famous singer.

How do you deal with people in your life with grandiose ideas that don't come close to reality?  Today we will continue with singing lessons because they both enjoy singing and that is reason enough to continue.

Busted...Wardrobe Malfunctions

Some things you expect will improve with age, ones that you take for granted like knowing whether or not a piece of clothing fits.  For one of our adults this has been an ongoing struggle and today's clothing issues are with undergarments. The last bra was purchased independently and there have been increasing wardrobe malfunctions - you know the type were younger siblings are forever scarred when the older sisters exposed body part escapes.  Something needed to be done and fast.

We started with the shirt being removed and some measurements being taken.  When we got to this layer it was know wonder so many people have been scarred, the straps were loosened as much as possible and just draped over her shoulders and the cups were hanging next to the breasts like curtains waiting to be drawn....the bra definitely did not fit!!! After taking some measurements and contacting some large busted friends it was determined a specialty store would be required.  As the bra fit was so far off I felt the panties probably had the same issue.  Being there was no way I wanted to expose myself to that fright I felt it would be best to trust the tape measure and measure over the pants.  It was confirmed that the panties must have been hanging on by a thread,  literally,  as the new ones purchased were 4 sizes larger than the ones currently being worn.

We were at the store for 2 hours learning how to put on a bra and determining the best fitting one.  I picked out 3 possibilities to start and had our young lady go into the fitting room to try one on and then call me.  The first one was done up to the loosest size leaving enough room for another person and twisted on an angle so only one breast was contained.  Lessons on how to wear a bra....something she has been doing for 8 years and then time to try on the next one.  This time the bottom band was tight but it was across the breasts making it appear that she now had four boobs.  More lessons and the process continued for 2 long excurciating hours.  The younger sister that came with us was laughing and rolling her eyes discretely, so her sister didn't notice.  The sales clerk kept asking if we needed assistance, explaining they have dealt with customers with similar challenges but I do think we may have been their entertainment also.

We finally escaped the bra store and we are still continuing with the lessons on how to wear the new items.  We have been trying to have her dress in front of a mirror and hopefully observing how things look.  She has been given picture cues for how to wear a bra and we go through the steps daily (in front of the mirror) hopefully in the next 8 years this will be mastered.  The fortunate part is we haven't had any wardrobe malfunctions since the purchase of the new undergarments and no scares to the siblings.

Are you speaking a different language?

Have you ever been somewhere that everyone speaks a different language?  What if you could speak the language but you didn't know what you were saying?  What if you said things that got you into trouble?  How could you get yourself out of trouble if you didn't know what you said?

This is a common problem for people with "social skill challenges" and for one of my daughters it is a huge issue.  My daughter is an extremely attractive, charming, naive young lady who does not present, on the surface like she has any special needs, yet the special needs she does have are getting her into serious trouble.

When hanging out with friends, in groups with peers, watching tv or movies people say things and everybody laughs.  This is one way we learn what kind of reaction we will get when we say something, and then we typically judge whether or not it's something to be said in other situations.  People also use slang phrases or idioms that can mean something completely different than what is being said.  For a lot of people with social challenges they take things very literal and may not understand what is being implied in many circumstances.  My daughter will hear a phrase or joke and then repeat it in another situation because when she originally heard it said everyone laughed, so it must be funny.  Too many times she will say something, in a family situation and we will need to take her into another room and tell her what she just said acutally means.  In the family situation she is fortunate because we know her challenges and try to help her through these social blunders.  In public, at school, at work or with peers people frequently don't realize that she doesn't understand what she says or hears and then they have differing views of her.

Most recently one of her olders sisters had to try and clear up a huge misunderstanding from something that was said.  An adult gentleman from an organization our girls are involved in approached our adult daughter, obviously feeling very uneasing saying he needed to speak with her regarding something said by the younger daughter.  This man felt our daughter had offered him sexual favours, in front of the entire class (which was a relief, keeping both parties safe but also extremely embarrassing for both) our daughter (after discussion) felt she had told a joke, ONLY A JOKE.  We used this situation to educate the gentleman about her special needs and I am hoping others can learn that just because someone says something doesn't mean they know what they are saying.

Our daughter has been working on social skills her entire life and we will continue educating her while trying to keep her safe.  Unfortuanetly with social skill challenges there isn't a list of, learn a,b and c and you will be fine.  Social situations are ever changing and never ending which presents more opportunities for social blunders.

It is finally up and running!

The swimming pool is finally up and full of water, it has seemed like a never ending process since taking the pool down last year for our house renovations.  When we took the 20 year old above ground pool down last year we noticed rust at the bottom of the pool preventing it from being reinstalled.  Having had a pool for the last 20 years has been a huge benefit to our family so we decided to replace it.  We were fortunate enough to find a new pool on clearance at the end of last summer that was much larger than the previous pool.  The new pool being much larger wouldn't fit in the same location which meant moving our playground and all the pea gravel and prepping the ground for the pool.  Thankfully one of our sons took it upon himself to move the entire dump truck load of sand and prep the area for the pool.  Setting up the pool did not go quite as planned, my husband has set up a few round pools and felt the oval pool would be similar, IT'S NOT!! The first go around setting up the pool, at a critical part of the installation my husband was attacked by horseflies, in which part of his reaction was letting go of the pool walls and them falling.  The second go around things just wouldn't line up and the third go around the walls were up.  Following the directions for installing the pool liner resulted in the pool collapsing when we had water delivered.  After googling liner installation it was determined the liner was to be installed a different way than described in the instructions.  Not being able to get the liner tight enough and the mounting frustrations we decided to call in a "pool guy".  For starters when you hire a "pool guy" they don't look like any pool guy you ever see on tv.  Secondly although they did a wonderful job of getting our pool ready for water we feel they ripped us off terribly.  They insisted on us paying cash, charging us $200 plus dollars per hour the only fortunate part is that it's up and the frustrations felt by everyone involved are resolved.

The pool has been providing wonderful therapy benefits for the children.  The number one relief is the 7 kids with seizure disorders are able to cool down during the current heat wave limiting their seizures and we are able to closely monitor them while in the pool when it's just us.  Going to the beach or a public pool with 7 kids experiencing seizures and 1 adult just isn't viable.  One of our children with autism has been so engaged when in the pool, interacting and giving excellent eye contact that we have been working on her therapy homework/goals while in the pool and getting tremendous results.  The children with mobility issues have been experiencing great freedom and mobility in the water.  We have multiple balls and toys in the pool encouraging the children to reach for toys, kick or toss balls etc to build strength, enhance body awareness and increase their gross motor skills.    I have read that water provides 30x more pressure on the body than air and we have noticed that it has a huge regulating benefits to our children with sensory issues.

Shortest camping trip on record

The first camping trip of the season always seems to take the longest when it comes to packing.  All the bedding that's been sitting over the winter needs washing, the spring cleaning of the trailer and the endless packing for 17 plus people and a couple of dogs is never ending.  Once packed the bedding and clothing stays in the trailer for the season only coming out for washing and directly returned for the next trip, which makes it so much easier for subsequent trips.  For food we have the kitchen stocked with the basics and we cycle through the same menu each camping trip which makes for less planning and prep work as I know the trailer has everything needed to prepare the meals.

We often camp up the island about 3 hours away, near where our son and his family live and one of our daughters is working for the summer which makes it easier for them to join us.  Fortunately provincial camping is no charge for families with disabled individuals so an activity that can be expensive is accessible to us.  Also the campground that we frequent has accessible washrooms and showers which is a huge benefit.

Our first camping trip of the season also became the shortest camping trip on record for us.  We arrived around 7pm as one thing after another seemed to slow us down preparing for this trip.  Our son and his family, and daughter met us there and we got set up.  The younger children and our granddaughter had fun playing soccer, which really means all 8 each had a ball and they were kicking them everywhere which was like a game of dodgeball for all the adults, while setting up camp.  After the younger crowd went to bed we sat around our "propane" camp fire, no real fires due to extreme drought conditions causing a burning ban.  At about 11 the clouds decided to taunt us and suddenly let go, raining down on us for a couple minutes.  Enough time for us to decide its bedtime and get the chairs put away.  Over the night we didn't have any rain until just before we got up and then we had torrential downpours.  We decided that camping in the rain wasn't going to work and packed up before breakfast.  Years ago when we had a different crowd we would tough it out in the rain sitting under tarps playing cards but that wouldn't work with this crowd.

The fortune part of this extremely short camping trip is after everthing is dried out we will be ready for the next trip and with the rain maybe next time we will be allowed a real campfire.

Challenges when raising someone with FASD

Recently my adult children and I were asked a few questions for a university research project on Fetal Alcohol Spectrum Disorder (FASD) which really got me thinking about how much we have learned over the years.  When my husband and I decided to adopt and we were checking off boxes for what risk factors we were willing to accept we spent hours researching the various potential risks.  I remember reading a lot about FASD and although we learned a lot it didn't really give us a clear idea of what life would be like.  With any diagnosis that's a spectrum it's difficult to truly determine what life will be like for each individual.

I thought I would share some of our responses and hope any of you readers might also share any responses you may have in order to help others considering adoption of someone with FASD.

What are some of the challenges for a family adopting a child with FASD?

I think a huge challenge is the lack of support these children receive throughout their lives from society.  The education system where we live does not fund people with just a FASD diagnosis there needs to be a secondary diagnosis also.  We have adopted 13 children with FASD and all of them have challenges with their learning.  Some have very low IQs, others with low average IQs and a couple with high IQs and all have challenges understanding what is being asked of them and need ongoing support to be successful.  In fact the ones with the highest IQs probably have needed the most support throughout their schooling.

As these children grow another challenge is, frequently they can not be left alone and may still need a "babysitter/daycare" when the parents are out even as teens/adults.  This can be a huge expense and inconvenience for families that many don't think of when adopting that cute toddler.  Different agencies that provide funding for respite frequently don't provide support for individuals with FASD.  Also finding someone to care for your adult child can be extremely difficult because the reasons they cannot be left can be overwhelming to many individuals.  Our 25 year old and 16 year old can be left alone individually for short periods of time, however our 19 and 20 year olds cannot be left and need constant supervision (which can't come from the 25 and 16 year old).

Getting support from medical, mental health and legal systems can also be a challenge.  When and if your child's behaviour gets extreme it can be difficult if not impossible accessing support because the different systems don't really have much to offer, so they give you the run around saying this is a problem for ____ but none have any real options.  If it gets to the unfortunate situation that the child can't live in the home due to extreme behaviours there are also limited options and frequently these adult individuals land up incarcinated or living on the street.

As adults they continue to need support becasue many aren't able to hold down full time employment or live independently.  Some qualify for supports for disabled adults and some don't but the need is still present for many.

There are also the many challenges that each individual family lives with however I feel some of these challenges would be alieviated if the support form society was present.  There is also the moral support that each individual going through these situations needs.  When you adopt and are then going through these challenges you are frequently limited by who you can confinde in - many people won't or can't believe what you are going through. You also have people that say "you adopted them what did you expect?" or they tell you to "give them back".  Sometimes when life is hard you just need someone too listen.

The children were also asked, what are some of the challenges they face living with FASD? (These are answers from some of our children)
Making good choices.  Understanding why something is wrong.  How people expect me to feel/act when I do something wrong.  I am gullible which gets me into trouble with some people. School is my biggest challenge it takes me so long to learn everything and then I forget so much.  Bullying.  Trouble speaking so others understand me.  Anxiety attacks.  Depression.  Not being able to do things that my friends can, all my friends passing me. Getting overwhelmed and having to cut back my activities if I do too much, even though it isn't much compared to my friends/siblings.  Learning is so hard.  Life is hard.

What type of challenges do you experience raising a child with FASD?

Hospital visit anxiety

This week brought us to Children's hospital for more testing, with half of our complex sibling group (the other half have their turn next month).  Having a large siblilng group with multiple challenges has presented quite the puzzle for the medical team working with our family.  It seems whenever we visit a doctor, which seems like always, we leave there with more questions and upcoming appointments than we started with.  The added challenge the doctors face is that the the kids are adopted making it difficult to get birth family information which would be extremely helpful with such a complex mix of medical needs.

For us too get to Children's hospital it takes 6 or more hours depending on how long the wait is for the ferry.  We usually leave the day before our appointments and return the day following our appointments and add some fun into our time away.  Our son has extreme anxiety and was terrified about the idea of going to the hospital yet again.  We are fortunate that so far none of the testing has been invasive however in the past we did have one traumatic day when they were trying to do blood work on all 7 young screaming children and couldn't get veins in any of them which resulted in them giving up and having to try a different day.  This event has scarred our extremely anxious son and no amount of preparation seems to relieve his fears.  We tried social stories, talking about what was going to happen on our visit, talking about why he was scared, we tried focusing on more enjoyable activities while away however nonething seemed to help him even combined with his on going anxiety medication.  Do you have any tips on reducing a child's anxiety?

While on the ferry we listened to presentations by the Naturalists they had on board which was a nice diversion for the kids.  The presentation went well with our planned afternoon activity of visiting the "aquarium".  The last few visits to the aquarium it has been extremely busy but this time was great as the crowds were small.  The kids loved the dolphin show and we were fortunate that the staff recognized the fact that a couple of the kids were in wheelchairs and provided us with exceptional seats.  One daughter was truly amazed and squealed with joy every time the dolpin jumped.  From the aquarium we set off to our hotel and spent the evening in the swimming pool.  This long day with different activites was very beneficial in keeping the kids awake as they needed to be sleep deprived for their testing at the hospital and were only allowed 5 hours of sleep.

At the hospital 3 had sedated sleep EEG's and the good news is 2 actually showed seizure activity.  The kids have seizures regularly and every time they have had an EEG nothing has shown even though doctors have witnessed them having seizures, so seeing the activity on the EEG is apparently a good thing.  Our 5 year old had a lot of difficutly waking up from the sedation and could not sit or stand unassisted until the next morning.  We then met with the neurology and genetics doctors were they decided more testing is in order.....looks like MRI's, spinal taps and cardiology are int the childrens future.

EVEN IF THEY ARE CLUELESS

Some days it seems as if everyone has an opinion on how our children should be raised and feel the need to tell us everthing we are doing wrong.  This unsolicited advice comes from strangers, professionals, friends and family but most don't have a full understanding of our childrens/families needs.

Recently one child had to have an ultra sound of her bladder and kidneys the technician requested she empty her bladder, this is something that she does not yet have control of.  Instead of the health care professional accepting that this is our daughters reality she goes into a long rant as to how they are able to retrain stroke victims to control their bladders so why haven't we taught our daughter.  Even after explaining that our daughter also doesn't have the cognitive ability to be trained this way the technician could not or would not let this go.

Therapies are another issue of great concern to the people in our life.  We get the "if only you took them to more therapy they could overcome their challenges" and we also get the opposite "your child (children) need time to be kids, they would make far more progress if you just stopped all the therapy".  The reality is I would love it if they didn't require therapy but they do and we are having it provided for them hoping for positive results.

As parents we also get blamed for their various challenges and I know we aren't the only ones who get this, many parents get blamed for causing their child's conditions.  It's because you didn't do ____ correctly or if only you did ____ differently.

When it's been a particularly long day...week... month... it can be difficult too hear the words of a well intended person without replying in a nasty way.  Sometimes I need to pause and consider where their advice is coming from and are they trying to be helpful or are they just being nasty?  Is there anything I can learn from the information they are sharing?  I also need to remind myself, especially on the stressful days, that they have a right to their opinion EVEN IF THEY ARE CLUELESS.  I also need to remind myself too speak to others how I would like to be treated because others also have exhausting and stressful days.  We need to give each other a break and keep our unsolicited opinions and advice to ourselves.  Telling people that everything they do is wrong or their fault doesn't benefit anyone.  Offering to help or simply acknowleding the effort a parent puts in would be so much more beneficial.  I would like to start by acknowledging all of you hard working parents "thank you for everything you do for your child (children)".

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.