This Much I Know

Sunday, May 25, 2014

Here's a miracle! Mom's taking charge and seeing results!

My name is Susanne  and we met over two weeks ago when you presented at Rexall pharmacy in Okotoks. That was the day our life would take a dramatic turn. Our family will forever be grateful to you, your wife, and Amy Holinaty.  This is our story.....

My husband Shawn and I had Liam 6 years ago.  Looking back it's always been a struggle although we weren't aware as to why?  Liam was always very difficult in that everything was more of a struggle for him.  But we would say oh its just a phase, or he's an only child, or he's a boy. But nothing seemed to get better and the phases never went away.  We struggled as parents and always questioned ourselves.......Why is everything so hard? Is it our parenting skills? Are we failing him as parents?  It affected our day to day lives and the strain on our marriage.  My husband works way and every time he came home I would be so exhausted and drained Shawn would just take over and we became numb.

In fall of 2013 Liam enrolled in kindergarten.  That was when everything took a drastic turn for the worse.  Liam was not tolerating being around other children. We would get phone calls daily from the school regarding violence and outbursts.  Liam was also not able to make any friends and was never even invited to a birthday party.  We met with the school social worker and they recommended Liam be referred to a pediatrician that dealt with the school.  Liam was diagnosed ADHD and was put on several ADHD meds over the following months.  I quit my job to stay at home thinking maybe that would positively impact Liam but it didn't .   In January 2014  the social worker and pediatrician met without our consent and decided Liam's meds should be upped.  As desperate parents we trusted and never questioned?? Liam was given the wrong dose by the physician and ended up in emergency the next morning.  We pulled Liam from the school and found out Liam had never been allowed to attend gym or play outside with the others as he was "different"  Liam told us he was afraid to tell us as he thought he was "bad".

As parents this has been our lowest point.  To see Liam who was such a special child go through this.  We then became more aware with eyes open and started to fight and advocate for our child.  We filed investigations with both the physician and social worker involved and they have been dealt with. We also knew there was something more then the ADHD.  I contacted the president of CADAAC Heidi Bernhardt regarding Liam's story.  She advocated for us and led us in the right direction towards Dr Geraldine Farrelley who also sits on the board and her team of Sally O'Rourke and Krisat Forand at Can Learn Society in Calgary for proper diagnosis.  Liam has now been diagnosed in addition with Autism Spectrum Disorder. 

A day in our life  was numerous outbursts where I would be screamed at, kicked, or spat at.  A rage that would get so out of control Liam would exhaust himself for an hour. I recall one night calling the crisis line.....I didn't know what to do and I was afraid for us both.  We became reclusive, never going into public.  The looks and stares of other parents were too much to take and  I never knew when Liam might strike out at someone else.  

Liam was on a med Trail and although we noticed calming effects and some positives it never took the mask of anger and aggression away.  As well we had to deal with the weight loss and trouble sleeping.

Then a small glimmer of hope.  I was getting my hair done one day and I was crying telling the hairdresser of Liam and the struggles we were having.  Usually unless you are going through this no one really gets it.  On this day the hairdresser said that they had a staff member the year before that had to quit her job due to her son having violent episodes as well.  She told me our stories sounded very similar and that her son had improved dramatically.  I asked her in desperation if I could have her info.  It was Amy Holinaty and I began texting her as I was in the chair.  As I told Amy about Liam she shared she was in the exact same position a year before. We arranged a meeting a few days later.

As soon as I met with Amy our stories resonated and she got that I was in a dark hole.  I obtained some Q96 and said we would start it as soon as we got back from Hawaii.  I believed Amy and saw her previous pain but I was still very scared.  To take Liam off his adhd meds was scary to me as he was 100 times worse not on them.  I got a call from Amy when we returned letting us know that you would be doing a presentation in Okotoks that Saturday.  I went and your presentation was so beyond moving that I knew I had to take the leap.

The next day I started Liam on Q96. I got a call from the school monday evening saying that tuesday would probably be very tough with the transition of being off school three weeks, my husband leaving for work, and a new aide.  In my mind too I knew he was off his meds but didn't tell anyone.  I got a call from the school that day and they said it was Liam's best day yet!! The calls continued over the next weeks.  There were no violent  incidents of hitting anyone! At home I saw huge changes.....Liam was happy, he hadn't raged, and his outbursts were way less frequent.  In addition his crying has gone down dramatically.  I could redirect him easily. It seemed the mask of anger Liam had since he was a toddler was gone and his anxieties lowered.

A week ago Liam had his second follow up 2 hour appointment at Can Learn.  He had a team of specialists that he had met with two months ago.  I hadn't told them I had pulled him off his meds and started administering Q96 but I knew that day I would have to be honest .  But  immediately they saw the change in Liam as he sat there for two hours with zero rage, anxiety, and aggression.  Liam was just a happier little boy.  They kept commenting how he was like a different child so much that Liam said "momma will daddy recognize me  when he gets home tonight?"  (My husband had been away working for two weeks).  Sally O'Rourke the psychologist even commented that Liam's eye contact had improved.  It was then I learnt that Dr Geraldine Farraelley had actually done a study with Dr Bonnie Kaplan at U of C in 2002 before it was approved by Canada Health.  She then inquired wanting to get more info from you! And commented...this is significant!

My husband Shawn came home that night.  On a normal arrival home it is two days of hell in our house with Liam unable to transition into the new addition.  It was perfectly fine and shawn was shocked....It was like night and day.  It has been three weeks where we have not been hit, or raged upon, or any crazy outbursts.  We went out to a family dinner a week ago and for the first time we had an enjoyable wonderful experience.  We can now go places without the anxiety or fear of what Liam will do.  The other huge change......Liam was obsessed with documentaries.  Its all he wanted to watch all the time.  He has not asked to watch any in the last two weeks and Liam's watching kids shows such as Scooby Doo.  Liam actually doesn't even want to watch TV much as he will just go play with his toys or go outside.

I feel like I have a life again and we can breath for the first time.  I had to give up my job in september working as a recreation therapist for 20 years with Alberta Health Services. I worked with seniors in LTC facilities and in the communities.  I recently got accepted to the University of Calgary for September in the Masters of Social Work program specializing in clinical.  I was able to accept because of this change in our lives.  Its always been a dream to go back to school and pursue this area and now I can!!!  My area of focus is geriatric mental health and I told Amy this has impacted our lives so much that I would love to look at Q96 decreasing aggression and rage in seniors with dementia.  Their quality of life could be greatly improved if their rage and aggression could be decreased.  They could participate in more meaningful activities, and have more meanighful experiences with other residents, caregivers, and staff.  I have seen many residents when its too disruptive on the unit be sent off to Ponoka for more specialized care away from their families and loved ones.  I have two practicums and papers and this is an area I'm very much interested in.  If you had any thoughts on it I would be very appreciative.  My first practicum is in January 2015 and I just have to be mentored with someone on the team with their Masters in Social work as well.  My mind is just churning seeing all the positives that could come from this.

Tony, Shawn and I cannot even begin to express our gratitude to you for being such a strong advocate for your family to lead you down this road to create this product.  To hear how hard you fought and went against the system is an inspiration to us.  You are a true advocate and being parents of a special needs child is a hard road and we always have to be that advocate for them!!  From the bottom of our hearts........Thank You!

Susanne and Shawn 

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