Ready Or Not......

Some of you may have heard through the grapevine that Quinn was starting school this fall. Because he is four is is old enough for junior kindergarten (We start them early in Ontario)

Originally we were going to wait a year to enrol Quinny in school as JK was up until June of last year, only going to be a half day program, as had been for so many years. We were instead going to enroll him in full day preschool so that he would get the most out of being in a structured full day program to prepare him for JK. Well, that was the plan until they announced at the school that they were going to have full day JK in September. We had to rethink what was best for him and decided, along with a truckload of therapists and school board members that we would begin the process in September, of enrolling him in school with his peers.

Traditionally this is a pretty lengthy process but I have to give some major kudos to all those involved who expedited this process because Quinn starts next Monday!

We are very fortunate that Quinn's special needs are very well documented as he has been followed by over 20 pediatric medical specialists and countless therapists,consultants and advocates. Sitting down with this large group of people, many of whom have been with Quinn since he was a month old, was a godsend. I cannot imagine how terrifying this process would be for parents who do not have the level of support that we have had doing this.

I had a difficult time, like many parents, when my older two sons started school for the first time. Letting go is never easy, even if it is only for a few hours a day. I cried when my oldest Tyler started school, because he was my first and we were in the middle of a crisis with Quinn. I just was not ready to let him go. When my middle guy Ryan started school the next year I was a disaster. He was only 2 when Quinn was born and being only 3.5 when he started he was still a baby to me and he was going through so much with Quinn's situation and our constant absences to attend to Quinn's medical needs. I felt like I missed way too much.

I always thought I would be that mom who volunteered at the school, or joined the PTA. I wanted to be very involved in their school lives, but it was not meant to be, at least not then.

When you have a child whose needs were and are as great as Quinn's, the definition of balance takes on a whole new meaning. In the beginning it was all about his medical needs, making sure he survived that first year and a half. To look back on it now, I am stunned by how we made it through. A year of chemo, two air ambulance rides to Toronto,an average of three trips to Toronto a month (8 hours each way), countless ER visits,deadly infections,emergency surgeries and hospital admissions. Somebody had to stay awake all night with him to make sure he did not die while having a seizure while he slept, so there was little sleep to be had.

Then things started to calm down a bit and we thought we were beginning to see the light at the end of the tunnel. At 15 months of age his medical issues began to stabilize. We began to cautiously look to the future.

Until it all fell apart within a matter of three days. In the period of three days our son went from a happy, bubbly, engaging social little boy, to a child who looked like him but did not react, have any emotions and stopped interacting with his family. The last time I received a kiss from my son was when he was 15 months old. Those three days of course turned out to be a very serious and sudden developmental regression, into the world of Autism.

And so our lives spiraled out of control, in a different but equally horrifying way. In some ways I would go so far as to say it was worse because we essentially lost the little boy we had grown to love so much. I would of course never change my little man for anything in the world but, it was an experience beyond what I am capable of conveying.

Fast forward to the present day, Quinn will be 4.5 years old on the day he starts school. To say that he has come a long way, well that is an understatement. Medically he is nothing short of a miracle and he is doing well. We don't know what the future holds but we are hoping he has had "his share"

PHACE Syndrome for Quinn, has meant so many things. His case is considered to be severe because of the many complications it has produced. There is a good chance that medically he will be okay, that the issues that were once life threatening, are no longer a looming threat. Many have asked if he is cured. The answer to that is no.

The many issues my son has related to PHACE have produced some very severe and lifelong consequences, that will always be with him and will be the biggest hurdles in his life. He can have therapy until hell freezes over, but the truth of the matter is that he will have many challenges to overcome. (and overcome many he will, that I am sure of)

I am not one to dwell on the past because our lives shape who we are, the good,the bad and the ugly and my son's experiences have helped shape him into who he is, a very brave, lovable and strong little boy, worthy of the nickname "Mighty Quinn" While I do not like to look back, I still cannot help but remember a time, not that long ago when I had great fears about what PHACE Syndrome would mean for my son.

Sitting at his bedside in the Neuro ICU after he was diagnosed with Stroke and PHACE Syndrome (and the many issues he has related to PHACE) I had many fears, many of them medical but many of them were about how "all this" would affect his development.

Like my son, my brother also had a stroke, his was a birth. Like Quinn it damaged a significant part of his brain. I was terrified. I have always been one of my brother's biggest fan's but the thought of my son living through any of what he had, was horrible. My brother's stroke was the cause of his global developmental/cognitive disability. To say that his life and that of my amazing parent's has been a struggle, well that is an understatement.

Being faced with what, incredibly was a similar situation with my own child, I just could not stop thinking about how it would all turn out. Would my child also be developmentally delayed? I asked this question, along with the fear I had about Autism, on the day my son was diagnosed. The doctor asked why on earth I would ask about Autism and my answer was that having worked with children with Autism for many years, I was aware of the link between abnormalities of the cerebellum and link to Autism. I'm pretty sure the man thought I was a bit neurotic.

So we know where the Autism thing went right?

The question of how all of "that" affected or would affect Quinn's development,was what would remain for quite some time.

Assessing a child who went through so much trauma medically early on, is difficult. Assessing one who has Autism is challenging. Assessing one who is non-verbal can be almost impossible.

With so many variables (different medical issues, a stroke, a separate brain anomaly, history or seizures, chemo etc etc) putting all the pieces together was going to be a challenge.

In September the day came when we were to finally get an idea of what this all had meant for Quinn. What had affected what,and how much. We were warned that what results were received were only a baseline measurement as the numerous variables, especially Quinn's traumatic medical history, would make it impossible to assess a severity on his developmental delay.

There was no doubt going into this that there would be one found. It's very common with Autism, especially with a child who is non-verbal, but it is also very common with children who have had strokes or have brain anomalies.

Going into it I knew what the results would be. I hoped to hell I would be wrong, but I knew my sweet little peanut and I was hoping the 7 years of psych and child development education would help give me a clue. I knew what they would say, but I still hoped somewhere in my mind and heart that I was wrong.

So as you know, PHACE led to a diagnosis of Autism for my little man. It also led to a diagnosis of global developmental disability....severity unspecified. The unspecified part gives us hope because they will not assign any kind of permanency to his latest diagnosis just yet, because he has shown in the past how well he jumps over the hurdles placed before him. This is something I truly believe in because, well that is Quinn. We never stop believing in him and his abilities. It is those abilities and what we know he will overcome that is most important, not what "disabilities: he is said to have on paper.

A lot of people think that Autism is a dirty little secret, and society has shaped parents to fear telling people that their child has Autism. That saddens me because I am immensely proud of every aspect of my son, who yes has Autism. I am not afraid to say the word or wear the ribbon. It is a very very real issue.

The same goes for the fact that my son has a developmental disability. That too, for many people carries a stigma that still exists. One that my own family has fought for years with my brother and we will likely fight for all of Quinn's life, but it too is not a dirty little secret.

I could not be prouder of Quinn and the fact that his verbal skills measure under age 1 and his overall cognitive level is closer to age 2 than it is to age 4. SO WHAT. He is an amazing child, a child who is special, but not for what his needs are, for WHO he is.

I still cannot believe that he will be starting school on Monday. I am not ready for this at all. I don't feel like there has been enough time, but we need to do what is best for him. I'm terrified but I know he will thrive. He will have one on one support all day long. He will have his therapies, his own program and he will have fun.

I remember when we thought that our only issue would be the fact that our son "looks" different when he starts school. In writing this I just realized that that whole issue has not even crossed my mind because it is essentially the least of our concerns. Sure the kids are going to stare on that first day, but then then will get over it as quickly as it started and they will never ask again. He will just be Quinn.

I'm probably going to have a nervous breakdown on Monday but at the same time I am sure it will be a reminder of how far Quinn has come. It was not that long ago that we were praying he would survive a number of things. Survive he did through the grace of God and the prayers of thousands of friends, family members and strangers from all over the world.

This marks a new chapter in Quinn's life. An exciting yet scary one, but one that is sure to bring more growth and many more miracles. This milestone will be a big one for sure for him but I am also sure that he will bring something very special to that school and to that group of children he will spend the next 10 years with in that building.

Ready or not......here we go!

(Please pass the Kleenex!)