Help Kiki Take Flight

The purpose of this blog is to raise funds for IBI (Intensive Behavioural Intervention) Therapy for my son Kieran (affectionately referred to as KiKi) and to raise awareness about the alarming state of our Health Care provision for children on the Autism Spectrum, here in Ottawa, Ontario Canada.

My name is Katrina and my husband is Steve.  We are the proud parents of four wonderful, energetic children. Kyle will be 16 at the end of June, Liam is 4 ½, Courtney is 3 and Kieran is almost 19 months old. One month after having Kieran, my husband was unfortunately laid off. An opportunity came up for him to be part of an Entrepreneurial program through EI.  He was accepted into the program last December and is well on his way to getting his Screen-Printing business off the ground.  It was a very difficult decision for us to make, when we decided that I would not return to work. I have worked for the City of Ottawa for the past 11 years, as first, a Paramedic, until I was injured on the job, and then for Public Health in Outbreak Management. I gave up my position because, economically it no longer made sense with three kids having to attend daycare, but also, we were starting to realize that several of our children were having developmental issues. My weeks were very quickly filled up with doctors and therapist assessments and tests. It quickly proved to be the right decision and a blessing.

Kyle, my oldest has Autism, ADHD, OCD and food allergies. Liam has some language difficulties and will be assessed soon. Courtney has Expressive and Receptive Language Disorder, ADHD and food allergies. And finally, there is KiKi…

 I knew something wasn’t quite right when my son failed to meet several of his milestones and when he started to “lose” words he once said. Long story short, I was referred to a paediatrician who then referred me too a Developmental Paediatrician/Psychiatrist (she has a double doctorate), who then did an assessment. I remember her asking me numerous times whether I saw any “Autistic behaviours”. I replied, “No, I don’t think so!” After all, I would know, since I already had an Autistic son. She still suspected Autism, but respected my hesitation. Well, this really got me thinking! I really started observing and documenting his behaviours and I had a heart to heart with myself. At our follow-up with KiKi’s Neurologist, he also suspected Autism. He then sent us for testing for Fragile X Syndrome and Micro array screening, which we are currently awaiting the results for.

I could no longer deny that my son was Autistic. This was the most devastating realization that I have had to come to terms with. So we went back to the Developmental Paediatrician for a follow-up assessment and on Wednesday, June 13th, 2012, my baby was given a diagnosis of Autistic Spectrum Disorder.

Right away, I went into “Mother mode.” I was going to make sure that what happened to Kyle, my now 16 year old, did not happen to Kieran. Because Kyle was not given his diagnosis until the age of 7, he did not qualify for any treatment seeing as the cut off was 6 years of age. Not only that, his school would not even recognize his diagnosis or put it on his IEP, until I fought to have the school board Psychologist do an independent evaluation. Sure enough, she confirmed his Autism diagnosis as PDD-NOS. Other than speech therapy, Kyle has never received any other form of therapy and has been awaiting funding from SSHA (Special Services At Home) for over 4 years.

With Kieran’s early diagnosis, the sky is the limit, providing he receives IBI therapy. This is where the problem lies. The wait time for funding for IBI therapy, here in Ottawa is 2 to 3+ years. This is, in no way, acceptable.

The cost for IBI Therapy for 3.5 hrs/day, five days/week for one year is $40,000.00. This is our goal this year!!!! With hard work and donations, we hope to provide therapy for KiKi until which time, we receive funding from the government. As a parent, you want to provide the best quality of life for your child and if there is a therapy available that can altar the outcome of their future for the better, I am sure you would not hesitate, to do everything in your power to provide this for your child.

I know I am not alone in my frustration to acquire IBI therapy for my child. It is an undisputed fact that the sooner you are diagnosed and the sooner you receive treatment, the better the prognosis is for the future. If a child was diagnosed with Diabetes, would the parents be told, “Sorry, there is a 2 to 3+ year waiting list for treatment!” No, of course not! So why are our children being treated as second best and not made a priority? They have a right to the same life-enhancing treatment within a reasonable period of time, just as does any other child, who has any kind of physiological or neurological disease or disorder. This may not be life or death, but Autism is life or LIFE! If you have ever known a parent with an Autistic child, you will know how heart wrenching it is to watch your child, be stuck in their own world with no friends. Not quite able to work out how to communicate with this world they don’t quite fit into or not able to verbalize at all; being ostracized or ridiculed by other children because of their “odd” behaviours.
There are many days, when I am surrounded by the chaos and insanity of my situation and all I want to do is just sit on the floor and cry. And sometimes…. many times…. tears are shed. But I trust that God has put us in this situation for a reason and that he will take care and provide for the needs of all my children.

Did you know that in North America...

 •Autism now affects 1 in 88 children and 1 in 54 boys (March 2012 statistic)
 •The 2012 numbers reflect a 78% increase in reported prevalence in the last 6 years
 •Autism prevalence figures are growing
 •More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
 •Boys are four times more likely than girls to have autism
 •There is no medical detection or cure for autism

Stats and Facts taken from the Autism Speaks Canada Website http://www.autismspeaks.ca/about-autism/facts-and-stats/

These Stats are, in my opinion, epidemic in proportion. If the wait time right now, is 2 to 3+ years, you don’t have to be an Epidemiologist or Mathematician to realize this is going to be a very big problem, in the very near future.  This is a crisis and the thing is, there is not a lack of therapists out there, there is just a lack of understanding, forethought and funding by the Government. It will cost $40,000 to $60,000/year per child for therapy, but it will cost the Government and its’ tax payers $4,000,000.00 per child for lifelong care, without this therapy.

Please refer to this link for more Ontario Stats about the care for our Autistic children.
http://www.autismresolutionontario.com/index.php?option=com_content&view=article&id=57&Itemid=10

No donation is too small. Everything is truly appreciated!!! An independent account has been set up in Trust for Kieran. You can make donations in several ways. You can press the Donate botton above; you can go to the National Bank, using Transit number 03141, account  number 0348800 or you can donate via Email Money Transfer at donatetokiki@gmail.com. If you have any questions about donations, you may contact Mark, Account Administrator, at donatetokiki@gmail.com. If you have any other questions please feel free to email me at thekikiproject@gmail.com and I will do my best to try and answer them. Please keep checking back or subscribe to our blog as we will be updating you on our progress and KiKi’s development. You can also visit my facebook page at: www.facebook.com/TheKiKiProject. Thank you, sincerely, for taking the time to read our story and hopefully, support my baby.