Sunday, 30 November 2014

"Don't take them! It's not going to go well"

We have been making our yearly rounds at the optometrist and most recently it was our youngest 2 children's turns.  The boys are 3 and 4 years old and unfortunately, are very complex with their multiple diagnosis, including extreme sensory issues.  There was a huge voice in my head saying "don't take them!!!! It's not going to go well!!!" But there was also another voice saying "what if there is a vision problem that's causing some of the issues".  So I listened to the second voice and made an appointment warning the receptionist about my "Monsters"and she assured me that they could handle them and they would test them as best as they could.

Both boys have been into the office on a few occasions when siblings have been tested which was a great help at getting them into the office.  Both boys walked nicely into the waiting room and played nicely with the toys...hmm maybe this will be okay.  We brought their adult brother with us too help in the waiting room while I was in the office with the other child.

The assistant came and asked "who would like to be first looking into her machine for a tree".  The youngest and most willing eagerly went and lasted 30 seconds before he had enough of that.  The assistant then asked for the next child, (and he was having none of that) that's when the screaming and head banging started.  She quickly said that they don't have to do that test and he was able to calm down.

Next it was time for the actual eye exam with the optometrist and I do have to say she tried.  The first child was patient for exactly 3 minutes but her flashing lights in his eyes HURTS him and he doesn't have the vocabulary to explain this so he cries, screams, kicks and hits.  Not being able to finish the exam and seeing an astigmatism in the one eye he is being referred to an ophthalmologist.  It was then time for the 2nd child who really did not want to even enter the exam room after his brother had more than warned him with all the screaming.  I had him in my arms, just inside the exam room door, trying to help him get comfortable with the surroundings and he was holding a small toy train when the optometrist comes at him, without warning, with her light that upset his brother so much.  Hurt and upset he throws the very small train and it breaks her specialty eye exam mirror as he continues screaming and wailing.  The optometrist then says she doesn't think she should do anymore and the ophthalmologist might be a better option.

Saturday, 22 November 2014

Medicines That Create Monsters

Almost 3 weeks ago our youngest started a new medicine that was supposed to help with his unique behaviors.  The medicine "trial" has been plagued with severe behavioral side effects that gradually snuck up on us since this medicine takes time to get up to full strength.  Which in reality meant after a couple weeks the behaviors got more and more extreme and you could easily be left questioning why, as the medicine started 3 weeks ago and could easily be overlooked as a cause.

We have had non-stop extremely fast talking, going a mile a minute, but, when added to the speech challenges you can not understand a word of what is being said.  Incredible risk taking as he has been climbing on and getting into everything he feels possible, and putting himself at huge risk of injury, not to mention giving me grey hairs.  He has been bouncing from one activity to the next, can't focus and can't slow down.  The moods are off the wall and rapidly bounce from our loving boy to a crazed tantruming monster, with more tantruming monster than loving boy.  All this added to non stop energy that just has him buzzing.

As our children have very complex challenges it is important to document any changes in medications and routines so we can review what has changed when presented with challenging behaviors or health issues.  When giving medicine it is important to know what side effects are possible including the more severe or unique ones as they could explain a lot.  With our children it is a non stop juggling act trying to find solutions for one challenge without setting off another issue so all the information we have available is necessary.

Fortunately after talking to the physician that prescribed this medication we found out that he can come off of it immediately and doesn't need to be weaned off of it.  It will however take about 3 weeks to leave his system before our boy is back.  We were also able to get an emergency appointment to go over the issues and come up with the next plan of attack.

Wednesday, 19 November 2014

Dog Food, A Balanced Meal For 11 Children???

Today, after our weekly therapy appointments, I needed to make a quick stop at Costco for dog food. Let me start by saying I really try not to take the kids grocery shopping as herding them through the store is a challenge when you have a couple in wheelchairs, 3 sitting in the shopping cart and others so distracted and overwhelmed that they aren't functioning well.  Added to today's feat was the fact that they were all tired from 5 1/2 hours of therapy and it seemed that almost every person needed to make a comment about the size of our family today.

So for the people of Costco today....

Yes there was 11 kids with me and that did not change no matter how many times they were counted by various shoppers (I was personally relieved that I had the same number going into the store as coming out of the store.  It always makes for a more successful day when you don't loose anyone.)

Yes they are all mine

No they don't have the same birth father....but they do have the same adoptive father

Yes I know what causes extensive amount of adoption paperwork (probably not what some were thinking)

Yes my hands are full and I prefer it that way as I couldn't imagine them being empty.

For the person who stated "rather you than me", my children and I agree

And a special thought for the gentleman that followed me through the store making comments to himself in every isle and then feeling it necessary to comment on my dog food purchase.  First, I must say that your comments won for most creativity and something I hadn't heard yet.  Second, although dog food may provide a balanced meal (for dogs), be cheaper than human food, and require less preparation I will not be taking you up on your suggestion of feeding it to my children.

Monday, 17 November 2014

Sea lions, roller coasters and water slides

I recently got away BY MYSELF too visit 2 of my daughters who have moved away for college/university.  Anyone who knows me knows that I rarely get away without the family however things change as the age gap and circumstances change within our family.  With our children getting older our relationships have been changing from a parenting one to a more adult friendship relationship.

While away my amazing husband not only looked after the family he continued working on our ongoing renovation project.  I do have to say when I arrived home and heard the tales of the current project I was glad I was away.  Our home continues to be turned upside down with these reno's and I am hoping the living room will be done in time for the Christmas season.

It was great spending an extended weekend with 2 of the girls.  We spent a few days at an extremely large mall.  While there between getting lost we went to the aquarium and watched a show with sea lions and penguins.  My daughters had their picture taken with the sea lion which kissed one of the girls on the head, dripping salt water into her mouth.

On the second day between shopping we went to the amusement park and rode a variety of rides and went into the haunted house.  Being the chicken that I am I did not ride the scariest roller coaster as I know it would have resulted in me having a headache for days.  One daughter landed up blacking out part way through the ride and then had a headache for the next 48 hours.

The final day at the mall brought more shopping and a trip to the "water park".  The slides at the water park seem to be getting more and more extreme but it was a fun time.

Saturday, 15 November 2014

Questionable labour practices and special needs

Raising multiple children with FASD (Fetal Alcohol Spectrum Disorder) and other special needs, we have had on going challenges when it comes to employment.  Living in a small town our teens/young adults are often asked to do small jobs in the neighborhood.  This is both a blessing and a challenge, for example yesterday our 18 year old comes running home from walking the dog saying "some guy up the hill wants me to come work right now".  When asked who the "guy" was and what he would be doing our son had no clue.  If our son had good judgement and common sense we would let him go and determine if this job was something he was capable of doing, if he would be safe doing it and if it was a legal activity however this isn't a skill our son with FASD has.

Added to this issue we have a couple children that have an inflated vision of what they are capable of doing which also causes an issue when it comes to employment as they frequently feel they have the skills/experience necessary for a variety of jobs. For example one son was asked if he could use a chainsaw and cut down some trees - he thought this sounded fun however we felt it would end like a horror movie and needed too step in for everyone's safety.

We have also come across people preying on people with challenges, to get a task that should be done by a professional, as a way of getting something done extremely inexpensively.  Our children/young adults have been asked to do jobs in condemned buildings that weren't safe for entry, they have been asked to deal with rat infested buildings, climb high up into trees to limb them, etc.

As a family we have come up with a checklist for our children when considering a job and require a couple of our children to complete it and present it too us before taking on any odd jobs.  Our hopes are that these questions will eventually run through their heads when considering a job.  Who is hiring you? Contact phone number? Will that person be present when you are working/who will you be working with? What will you be doing? Do you have the skills for this job?  What safety gear and/or equipment is required?  Do you have the safety gear/equipment required? What day and time will you be working?

Our rules have caused some short term upset when we have said no to certain jobs especially if that is on a day when the child in question is low on cash.  I do feel that overall it has saved our children from some unsafe situations far more times than they have been upset.  Having used this system for multiple years I can say that our 25 year old son is now starting to think through these questions prior to taking on a job.

Sunday, 2 November 2014

Junk in the trunk + Wrecking ball=FUN

This past weekend was Halloween, how we spend the day has changed over the years depending on our family's needs.  In the past we have attended community bon fires along with firework displays put on by the local fire station and then there were years we would go swimming and back to Gran and Grampa's too make pizza.  Since the adoption of our youngest 7 children a lot has changed because their abilities are very limiting.

It is important to us that the kids have memories of having fun on the various special days even if that "fun" isn't the same as their peers.  This weekend's  "family fun evening" started with a special "kid" dinner - nacho's.  After dinner we had a games night, with multiple ages and abilities our games were tailored for everyone.

Musical chairs with songs like the Monster Mash.  Instead of using chairs we use small mats as getting up and down to a sitting position can be challenging.  Other game ideas came from the television show "Minute to win it" and "Pinterest".  Junk in the trunk brought out hysterical laughter and crazy dance moves from everyone - a small box filled with ping pong balls attached to a belt and worn around their waist.  Each participant had to dance, jump and shake to be the first to empty their box.  Defying Gravity - keeping an inflated balloon in the air was another game that we modified depending on the ability some kept 1 balloon in the air other had 2-3 balloons.  Cookie Face was well received, a cookie was placed on the participants forehead and each person had to wiggle and move their face trying to get the cookie to their mouth without hands.

 Say aaah - holding a popsicle stick in their mouth the children were challenged to balance as many sugar cubes as possible on it.  For the children that found this game to challenging we had a variation of the egg and spoon race using a sugar cube and a spoon.  Wrecking ball was harder than it looked, a tennis ball in the foot of pantyhose and then pantyhose worn on the participants head.  The participant then swung the ball with their head trying to knock down 8 bottles of water.

After the games the younger children went to bed and the remainder of the family watch a movie.