Owen and Ben's Journey Through Autism

Owen and Ben's Journey Through Autism

Friday, November 8, 2013

The Dream.

When I began writing this blog in March 2010, it was because my Nana told me when she was going through one of the hardest times in her life; she would journal. Being Vanessa, I took it to a new level, and I began to blog.I choose to make this blog public; because my way of thinking was, "why answer the same question over and over again", when I can post it here and whoever gives a shit can come and read it.

I thought I am literally the only person in my life that has a child with Autism. None of my friends at this point even had other male children, let alone a child with a disability. So I didn't have anyone to turn too that would understand fully, so I turned inward into myself, and that is when Owenandbensjourney,blogspot.ca was born. Never would I think and plan of topics to write, I just began to write about our life, the ups and downs, the puddles and jumps Autism would take us on, and by June 2012, it was x2.

Never, ever, in a million years would I even think this blog could be created into a book. But what was stopping me? A blog with almost 30,000 views began to take on a life of its own, being read as far as Australia, UK, New Mexico. When you Google Autism, we are a top link for blogs. Then there was a sign. I was the sign - so I began to look for a publishing company.

I emailed 2 on my own; both in Canada, both stating after I sent in my Query Letter, Synopsis, and Bio it would be 4-6 weeks until I hear, if I heard anything. Then I was pointed in this direction again, this time, by my friend and fellow ASD mom, Christie. Christie messaged me, as she was a member of the FB group Autism Speaks, and a publisher who himself has Aspergers and has written over 40 books about his life and personal journey living with Autism. He was looking for parents to tell their story; it was a sign. I went for it.

Fast Forward to right now; in 3 days he took our story on. My blog is so huge, it will be split into 3 separate books in a series. Book 1 is now released; and as of tomorrow, can be purchased on Amazon, or as of right now they can be purchased on my website here.

These books are compilation's of my blog; they are the blog posts made into a book with some changes made here and there. I think I am still in shock, and cannot thank my Publishing Company Breeding Publishing enough for all they have done for me. Having Autism be the forefront in our family, it meant even more to me to have Travis, our publisher, have Autism as well. Raising more awareness and education is what this blog was for, and created for.

Click RIGHT HERE to go to Breeding Publishing's website ( I am under More; Breeding Authors)

                                                (This picture is the Cover for the 1st Book)

I thank you all for continuing to read, support, and help us raise awareness, acceptance and advocacy. I am hoping to continue to speak to schools and organizations about Autism, and to keep telling our story.

- Vanessa

Wednesday, November 6, 2013

Back to the College.

I have had the honour of being able to tell our story and journey of Autism twice at Niagara College in the past 2 weeks. The first time you can read about here.

The 2nd time I was able to go and speak, I was joining my fellow ASD moms, and lucky enough to also call them friends, Lucy and Darla once again. This time was a bit different than the first time; this time the questions were already given to us and we were almost like a panel answering the questions. Here is a bit how the 2nd time at Niagara College went for us and our story.

I was the last one to roll in; and getting ready, shipping Ben off to my mother in law, and driving to Welland takes a bit more time for me :)
When I arrived LB the teacher, was explaining to her class all the amazing course and seminars there are to experience around the world in regards to Autism. Then, she gave us the most beautiful introduction; and then it was game time.

Most of the students that were in this class, Darla and I already were able to speak too the week prior. So, for some it was a bit of a re-run, but what was different this time, was the questions we were able to answer. The questions were a nice addition as well, because we got to touch on topics Darla and I might have missed before. Here are some of what the questions included;

- What was the process of diagnosis and did you see it?
- Do you children have siblings? if not, was it because they had ASD?
- How is the school system?
- What is a day in your life like?
- What are weekend like?
- Any movie obsessions?
- What does the future hold?

This time, my breakdown came when we talked about siblings. Maddie is my life. As I have blogged about in the past, the compassion and utter love this little girl has for her brothers, you can't teach that, that is natural, she is mini-me. When I began to put this into words, and the guilt that we as parents suffer for the amount of time and energy our children with ASD take from us and from their typical siblings, it leaves you feeling so guilty as a parent. I expressed to the class how much I try to make times with mommy and Maddie so special, that I try and take her out alone with me; but in all honesty, her life in a way suffers because of our obligations with the other 2; especially with Owen in 25 hours per week of therapy at Bethesda.

What if you were to ask Maddie though? She would say she has the best mommy and daddy, and she loves her brothers so much. My hope for her is that she continues to grow up with that full and beautiful heart; then cue the ugly cry as I am telling this to the class. Thankfully once again, I looked up and I wasn't alone.

After hearing again about Darlas son, and Lucy's daughter; I loved my friends more. We all couldn't explain enough what our Support Group does for one another; how we have the most amazing friends in our lives, but having our ASD moms is different; there is just full acceptance and complete understanding. The class once again, had great questions, we shared tears again and of course, laughs. They listened and they were engaged, and I left feeling like they now knew us on a personal level; and would be honoured for them to meet my children, ASD or not.

This Friday, I have been invited back with some ASD moms and professionals (that I am friends with!) and we get to hear the students present their ASD presentations. I cannot wait; and what is in store for the future? As of last night, I have been invited to speak to a Special Education course class at Niagara College again next Semester. Have I found a new passion; hell yes.

- Vanessa

Monday, November 4, 2013

Sensory Swim


The old Ben would meltdown when the sight of water came into his vision; and it has been a Full Time job to work on his Sensory issues regarding water.

So, Ryan implemented Operation look like a bad parent to typical parents but I know what I need to do to push Ben into loving the water Part 1.

This operation went into full mode the last time we went to the Great Wolf Lodge. Ben (with age) has gotten used to the water, but that is the end. He would not attempt jumping into the water, or heaven forbid enjoy himself what so ever. When the waves would turn on, he would scream and run out of the water; and I had to really try my best not to laugh my head off and look concerned to the other traumatized parents surrounding us.

This time in October, it went much better. As parents were in the water near us, Ryan made Ben jump into his arms in the water over and over; and through 20 minutes of tears and stares, Ben began to enjoy swimming in the water.

So why a meltdown at Sensory Swim at the Children's Centre?

Because all fun times must come to an end; the transition to leave the pool.

Even with a visual schedule helping with ending the swim session, Ben wanted to stay. Me, trying to bribe him with going to the daycare at the gym didn't work (that ALWAYS works!) instead, it was 20 minutes of, "stay at pool".. as we were walking to our car in the parking lot, driving to the gym.... and it finally ceased when we got to the daycare in Goodlife.

The swim itself was fantastic. This is how the Monday morning went down;

We arrived at 9:15am after dropping big bro Owen off at Bethesda, and Ben was so excited. We met his OT Sally in the waiting area, and we headed down to the pool... which is more like an amazing bath with cartoons all over the walls. There are 3 other boys in the class, all ranging in abilities - and for once in our NCC career, Ben is the most advanced. The other boys are so sweet, and after meeting them all, we were ready to get in the pool.

We did different gross motor activities; Kicking in the water, learning to blow bubbles, sorting colours into buckets and taking big steps to get to the coloured plastic balls, and using floaties! Ben had an amazing time, and like I said when it came time for the good-bye song, Ben's meltdown took over.

But; he is striking up conversations with his granny about it; so at least his meltdowns mean he loves his Sensory Swim.

Today was week 2 - and he did even better leaving the pool, after the, "Goodbye" pool song today. He is using his self-regulation, participating in a group, and really working his gross-motor skills. I could not be happier of the progress he has made just in 2 weeks; as long as I bring a transition cookie and we go to the gym after so mommy can, "workout" - we good.

- Vanessa

Saturday, November 2, 2013

The Progression of Halloween.

It isn't easy. Yes, it isn't the dreaded Holiday Christmas for our Autism-Sensory driving kiddos; but its a close second. Halloween.

Where for some odd reason, you dress up, go to strangers homes, demand candy and leave. But, have you actually sat down with a warm cup of tea (or a glass of wine) and wondered what our children/adults with ASD are actually experiencing? I do. I think it would go something like this for Owen and Ben.

"I hate clothes, mom knows this - yet, now she not only wants me to wear clothes, she wants me to wear clothes of some cartoon character I mildly enjoy all day. Its itchy; it doesn't feel like my regular clothes, she is making me wear Harry Potter glasses and have gel in my hair... but I will keep it on because I am out in public, and if I strip mom is going to be pissed. I don't want any other type of candy than aero bars - that's it. If I get something different, I am going to throw it on the street as we are walking, and hopefully mom won't catch me. Are you serious it is raining? It is raining and she is expecting me to go outside to houses I don't know, and actually expect me not to strip naked when my clothes get wet? how am I going to keep my shit together? and all these new people that I have no clue what their names are, and all they do is talk and yell? All I want to do, is go home, take my clothes off, play on my iPad, eat my aero bars I found, and be with my dad." That is how I envisioned their perception of our Halloween this year.

But, it has been the best Halloween yet.

Here is the progression for Owen and Ben over the years, notice costume selection.

Owen's 1st Halloween.. the original Scooby Doo 2007

(I don't have Owen's 2nd Halloween for some reason?!)

Owen's 3rd Halloween - just going to families houses 2009

Owen's 4th Halloween - Where the issues REALLY began - 2010

Could not keep the mask on; was driving him crazy

Trick or Treating was a NIGHTMARE

Owen's 5th Year - no mask, was now familiar, was getting better
Also we discovered he can tolerate hats, but not masks. - 2011

His Brothers first Halloween as well

Was much better at going to peoples houses, with my assistance 

Owen in 2012 - Wearing a light, no mask Halloween costume!

Owen, Ben and Maddie this year - 2013! Rockstars.

Owen as Harry Potter - kept glasses on!

No going to the doors anymore with Mom!

It has been a progression; but I am so impressed at how far they have all come, especially the boys!

Hope you all had a wonderful Halloween!!

And we once again, have to say good-bye,

When I spoke at Niagara College this past Tuesday, something hit me.

Darla and I were asked, "what worker really stuck out in our mind". I wrote my answer in the last post, but I will write a bit more today. Heather, has stuck out in my mind. I had 2 therapists that were my world when Owen began Private Therapy, Heather and Laura. Both these women went above and beyond their call of duty for Owen. They took me at such a hard, emotional, fragile time and were there for me. They accepted that I don't ever rest, that I will always be in their face; they embraced my ways and in return, are 2 women I will never forget.

Why did Heather stick out in my mind? Owen was classified as, "Non-Verbal". He had sounds, and maybe 2 or 3 words give or take. He was turning 3 years old, and I still had not heard him call me, "mama". He could say dada no problemo; mama was not in his sights. Then that all changed; right after he turned 3. I went to pick him up from therapy like I always did after my hour long personal therapy session at the gym to loose weight, and Heather had the biggest smile on her face when she brought him out to me. She took out her phone, and I will never forget the sound I heard; mama, pointing to my picture. Done. Not only did Heather video tape progress for me, she always kept me close, and our communication was open and it was honest. Then we had Laura join our team, same. I knew when I dropped Owen off to her, he was going to work, and she would be so eager to tell me. I trusted both these women fully, and seeing their love for Owen in their eyes, their hugs to him; they won me over. I have never lost contact with both these women, Heather is now out West, yet I hear from her commenting on my FB pictures, has stopped by for visits - she is apart of our family. Laura, I would do anything for as well, and now we get to see her more often as she plays on Ryans Volleyball team. This is what happens when you have a child, and more so a child with a Special Need - you find someone who puts their entire heart into their career, where even they can't remember they actually get paid for being with your child; they are grounded, passionate. All things had to come to an end; and when Heather and Laura stopped being Owen's therapists, I took it hard...and again, we have gone through this in August and now, today.

Since being at Bethesda for IBI, Owen has had a team assigned to him. A team usually consists of 3-4 regular therapists, but for us, it has been a bit different since August. In August, I was told (in person at home, maybe so I wouldn't make a scene!? haha) that I was going to loose our male therapist, Kevin. I was heartbroken, not only for how Owen loved him and responds so well to males, but for us as a family. Does that sound weird? Here is why it's not; at all. Our therapists are in our home, they know our family in and out. They know the family dynamic, Owens siblings begin to love them. We get affected; and I lost him at the end of August - Owen still asks for him now and then. I hope in the future I am able to have Kevin work with Owen again; you cannot teach that kind of heart.

Today; Owen (and us) loose another. Owen's main therapist, Charissa. I couldn't even look at her too much when I dropped Owen off a Bethesda today; because I got emotional. As I dropped Owen off for his Halloween day, dressed to the 9's as Harry Potter, Charissa greeted us dressed the same, but with her beautiful pregnant belly adding to the costume. Thats' why we are loosing her; she is due in November. My selfishness seems to take over, I want her to stay with Owen - you really have to go have a beautiful baby? hahaha. Charissa and I clicked; her love and compassion for Owen shine when she is with him, she would look at Owen and could tell right away his mood, how he is feeling. She could walk into a room and his behaviours stop; she was an ideal Primary Therapist for Owen, and I hope to never loose contact with her; she was made for this job.

Good-byes in this field are never easy; but much worse when you find a worker that ends up loosing that title of worker, and gaining a title of friend or family instead.

- Vanessa

Tuesday, October 29, 2013

Educate. Advocate.

What do I always say over and over on this blog? Education is the best form of being an advocate; and myself and my fellow ASD momma bear Darla were given that chance again today by our friend and now teacher at Niagara College, Karen.

I have known Darla for 3 years now, we met in our Support Group for parents with children with Classic Autism on Thursday evenings. I remember the first time I went to the group, I was 3 years less wiser about Autism, I was scared for my son, my family; myself. Thank God for the Internet, all my yearn for constant education on ASD and my son that I had to try. I met another mom friend of mine at the, "Welcome to Autism" series named Kelli - and with her in hand, we went to our first meeting together and haven't looked back.

I cannot tell you the vibe you get as a new parent in this world, expressing your inner most fears and questions - listening to other moms who years before you, have been there. It was refreshing. I got addicted.
And in time, these women became my friends; friends I can tell anything too, regardless of how much shit or nakedness was involved - I thank God for these women. legit.

Onto today.

Darla and I met Karen at the front of NC Merritt's wing in Welland, and we headed into the class. On first glance, all the students were diverse. Mostly female - except for a male student who volunteers with Autism Ontario and was just in the paper himself for living with Aspergers - and he is an Owen as well. Read his article here.

I started the presentation. Normally, I only speak alone. This was the first time I was able to speak with a partner; and could no have asked for a better person. It worked out perfectly. The students were able to hear my journey with my boys from a fairly newly diagnosed family; and then they got to hear Darla's story with Spencer, who now is 20 years old. How much has changed, what services are available and what were not even around when Spencer was going through the motions.

We each spoke about therapies, the cost of private, clothing and how it effects our sons, food issues, obsessions, toileting, school, EAs, teachers, my job as a Developmental Support Worker for the past 8 years, our pregnancies - everything.

What was supposed to be an hour, turned into 2 hours. The class had a ton of questions; they were engaged. We shared tears; laughs - they were connected. Darla and I spoke about what worker really stuck out in our lives, and as soon as I started to speak about Heather and how she would film Owen progressing for me, and when I heard, "ma-ma" for the first time - I could feel it. I cried. Like the ugly cry. But, I looked up, and I wasn't alone.

A student asked, "what would we recommend for them to be a better worker". Besides all the obvious answers, all I could think was to continue to be grounded. Never forget all your experiences, good or bad - they will make you the worker and person you become better. Yes, text books and definitions can be great, but real experiences will make you the better. I loved every part of it, I couldn't shut up. Of course I went in dressed to the 9's in our Owen and Ben Keep Calm shirts, and of course I wanted the class to see who I was talking about - so I brought a poster of the boys from the fundraiser. My boys would be people to them in our presentation - it makes it more real. and they got it.

At the end of our presentation, I asked the class for their permission to take a picture (for my FB and for here of course) and Karen gave me a beautiful bottle of College Red wine, and a gas card with a beautiful thank you note, with an agreement Darla and I would be back next year to speak to her class, which we both said an immediate yes too.

Class if you are reading this; thank you. We were able to spread our story more through you, never forget the choices you make effect a life; several lives. Never forget why you got into this field, always be yourself, be honest, compassionate, and a hard worker for the cause, and always make a sure line of open communication. You guys rocked; and I will keep you posted when the shirts go back for sale for the run this coming June. Good luck to all of you; you were a pleasure to speak too.

- Vanessa

Wednesday, October 23, 2013

Autism; it has taken over.

You ever sit back and wonder why you are the way you are? Why you look the way you do, have the lifestyle you live, the children you may or may not have, the choices that have brought you there?

I did; today.

I reflect on these choices many times a year, especially if something major has happened. Today nothing super majored happened, but it for sure got me seeing clearly again about the life I have, the person I have grown to be - and I'm pretty stoked.

I am not sure if I have mentioned my earlier life before more than struggling with my past of not being the nicest person in the world; something I fully regret with every fibre in me. Let me introduce you to Vanessa circa 1996-2002. She was athletic, she did very well in school (except math and french) thought she was Jim Carrey's long lost twin, and was awarded the Citizenship Award when she graduated Westmount Public School in Thorold with 12 other graduates. Through the years, she always would move on with Public Speaking in school, and was in Drama since she was 9 years old. This love of public speaking followed her into Highschool, and she stayed in Drama winning an award for her performance in 2002 at the Sears Drama Festival. Why is this important?

Because officially now it makes sense.

My dreams on leaving Niagara never happened, I let love get in the way of what I really wanted to pursue, so that ship has sailed. Something bigger than me had other plans for my strengths; and it came in a 7lb 14 ounce package named Owen Carl Coens. Little did I know in 2007, this boy was not only going to teach me how to be a better person and mother, he was going to need those strengths I put on the back burner for so long, and that was drawn out of me again when we asked our community for help to attend (2) Fundraisers for him and later on, his brother so they could have therapy sooner than the typical 3 year wait for government funded therapy.

It gave me another reason to speak again; and this time I wasn't memorizing lines, I was speaking from the heart as a mother to a son with Autism; in a heart breaking but positive light that so many are ignorant too.
Because of my voice, we were in Niagara This Week with our story, with my baby boy on the front page; because of my voice, his classmates; every year for the past 3 years are trying desperately to understand the uniqueness of my son and celebrate all of our differences, so will Highschool students after I have spoke to Westlane Secondary School and E.L. Crossley Secondary School; because of my voice, we got to tell a bit of our story on the Marilyn Denis show back in May 2013, and once again, because of my voice and my love for my sons and the Autism Community - I am honoured to speak at Niagara College in their Autism Class "Working with Families" and we will be featured in the St. Catharines Standard and Niagara Falls Review.

Also with my voice, I am not afraid to talk about our life. I like to. I like to make others aware of the struggles, the gains we have had, moments that only other parents in our shoes would truly understand - and most importantly, I like to educate. Do you know how many parents I have had the pleasure to meet that just received their children's diagnosis and have no idea where to go from there?! That they want to access services, but don't know where to start or what they are entitled too?!
There is my calling. I was given the ability to stand in front of hundreds of people sometimes, and 1 person the next time, and educate, advocate and celebrate all that is the positive and real sides of Autism.

Thank you God for my gift. Our family appreciates it.
Vanessa Xo.