Walk To Ottawa

Arriving at Parliament Hill January 29.2015

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Walk To Ottawa turned 1 today!

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@SenatorMunson #Autismonthehill #Autism #ASD #walktoottawa @walktoottawa thank-You for your tireless work for families raising children trying to reach their full potential.

[walktoottawa]

March 15th, 2015

Written: March 15, 2015 Walk To Ottawa, Chapter Two As we walked, I talked. I was so overwhelmed with the group walking down University Ave., with me. All of you are really going to walk with me? I started feeling very emotional. All the people that I see occasionally and new people are walking for Autism! I was proud. In my peripheral vision I could see flashing lights. It was the Toronto Police Services. They were not going to let us stop. And we didn’t! We were important and walking for an important cause. It was bitter cold. Christian from Autism Ontario approached me and said his good-byes. He was so proud to be walking with us; I was so proud to be walking with him. MP Gord Brown and MPP Steve Clark approached me; we said our good-byes… for now. How honored I was to be walking with these men. They took so much time out of their lives to support our Autism Walk To Ottawa. It is time for Heidi to say good-bye now too. She works just off of University Ave., a mom that strives so hard to work, take care of twin boys and now me! I started thinking of all these people around me today. Why can’t I be more like them? Why can’t I be more organized so I can plan things better and especially work? I feel so strong today but, I also feel that I am missing out on work life. I’d love to hold a job bettering our communities, cities, towns, country “WORLD”. So what is holding me back? “Responsibility!” I wanted to scream!!! At the top of my lungs!!! I live with my Elderly Aunt. She is 88 years old this May 2015. Her birthday usually falls on Mothers Day or close to it. She is also my Godmother. Aunt Mary has been living with us now for 22+ years. She has helped raise my children. She is single and never has been married. When Jacob came along almost 15 years ago, parenting was really hard for Aunt Mary. She wanted to take on the roll of being Jacob's primary caregiver, while I worked. Everything was a challenge for her. For the longest time I couldn’t figure out why it was so hard? It was a baby she was looking after. How hard could it be? I worked very close to our home in Etobicoke North, Ontario… Aunt Mary would bundle up Jacob and put him in his car seat and bring him to the parking lot where I worked. I would come out on my breaks, and nurse Jacob in the back seat. Even when I worked overtime she would be waiting for me with our little bundle. It seemed when he was being fed; it was the only time he was really happy. I noticed Jacob had sores on his mouth one day. They were big and gross. I took him to the doctor. He had a fever and swollen stomach. The fever was high. We ended up in the hospital Emergency… We ended up in a room on the Children’s ward. 21 times I counted with each poke! The nurse was trying to squeeze his little feet. His arms, legs, and feet were all bruised. The Emergency doctor had requested blood work and this nurse was determined that she would do what ever it takes to get the samples. I had to stop her and complain to other staff. I was broken hearted because Jacob was screaming from pain of being held down and squeezing his little body. We were in the hospital for a while. Jacob was in a metal crib. His Godmother never left his side. We were so worried because the fever would not go down. Finally the fever broke. No diagnosis was given, we were given medication and discharged. It was a very strange, painful stay at the hospital. Jacob was talking in full sentences before his 16-month life. He was demanding, full of energy, fast & becoming aggressive. It was too much for Aunt Mary so I needed to find another resource to look after Jacob so I could continue working. Not far from my work I was able to find a daycare. It seemed like a great place. Security, lots of staff, toys, clean and a playground. It was a lot different than I had expected. It was really big and expensive too! Was it worth working? By the time I paid the daycare we barely had any money left for food. My vehicle was always on empty and I prayed everyday that I didn’t run out of gas. Aunt Mary was so relieved I got daycare but felt bad that we had very little money daily because of the expense. Well honestly, I paid Aunt Mary every week for babysitting Jacob. I just didn’t pay her like I did for the daycare. After months of waiting I finally got a special rate for single parents. I was delighted that I now could have more money for the children and for gas. It was so much easier than struggling everyday and going to work hungry. I picked Jacob up early and everyday there was a complaint. I started noticing bruises, bumps and bite marks on his body. I questioned it… filled out a report with the supervisor. Then one day I got a call from the daycare. They asked me calmly to come into the daycare that it was rather urgent. I asked if Jacob was ok… they announced that he was fine. I seemed to think that he was not fine. I called my boss and left work, heading straight for the daycare. It took me about 15 minutes to arrive at the daycare. They took me into the office and asked me to sit down. I waited. Finally the supervisor came in. She announced that they could no longer keep Jacob at their daycare. She said he was unmanageable and it was affecting the other children. I couldn’t believe my ears. I said where is Jacob. She said he was down the hall in the classroom and that all the children had to be taken out of the room and brought outside. After quite sometime, an unsupervised child, mine was left in this daycare room by himself. When I opened the door he was soaking wet, screaming and did not recognize me at all. He had totally disconnected with his where abouts or anything. He was standing in a corner screaming. I started to cry. I wanted so much to help Jacob. I tried to get his attention and calm him down. It took sometime to do this. He was exhausted, his eyes were rolling backwards in his head, his ears were scarlet red and his breathing was labored. I was scared when I saw him. He looked so sickly. I got him home and stripped him down for a bath. As I took each piece of clothing off, I saw black and blue marks across his back; arms and full handprints wrapped around his little knees. It was horrible. I called our doctors office right away. I told the secretary what had happened and they told me to come in right away. This is the beginning of our life long journey… Aggressive Behavior, Parenting 101 and living the worst journey any parent could imagine. Jacob and I arrived at our family doctors office. They called us in, asked for me to remove Jacob’s clothing. It was awful. He was so bruised and injured. Your so angry at the staff, you start feeling guilty for putting your child into daycare and then the announcement from the doctor; Doctor: “I have to call The Children’s Aid Society (CAS).” The doctor advised me to go home and take lots of photographs. He said that the CAS is swapped and can take days and sometimes weeks to visit. He said by that time the bruising could disappear. He said you would want to have evidence. Then I started thinking, evidence? After a few days I received a call from the CAS. They made an appointment to come over to our home. Aunt Mary was so frustrated. She was back being Jacob’s caregiver. Because Aunt Mary was so worried and upset I went to work and booked an appointment with my boss. I told my boss what was happening and that I needed to change my shift. By changing my shift I would have to pump my milk for Jacob, I was still breast feeding, I would have to drive out of town to work; so I would be far away from home and be away in the evening. This way I was home for everyone during the day. I looked after Jacob, did laundry, cooking, lunches… gardening and dealt with two teenagers; Tim & Krystal. This was really nothing new… It just meant that I wasn’t going to be home in the evening. The CAS worker came to our home. She asked me to leave. I sat outside on the staircase. I was so upset. Even though you know that you are not to blame with the contact with CAS, you still feel vulnerable. The worker came out and sat beside me. She said: I just needed to talk to your family. We know that you are a great mother. She hugged me. I was started to cry. She said: I have to tell you; when you picked your son up at the daycare, a worker had called CAS on another worker for injuries your son received. We had to investigate and now this has become a police investigation with the daycare. I told her: I need help. Please help me? The lady from CAS said to give her a few days and she will look into whatever she can for us. After about four days she (CAS) called me. She had heard of a doctor at CAMH that was doing a study on a book called the “Incredible Years ©”. She gave me the information and wished us luck. I contacted the doctor and she told me that I would have to be accepted into the study program. They were looking for aggressive children between the ages of 18 months and 4 years old. We were put on a wait list for a few weeks and given appointments at SickKids© Hospital. We attended several weeks of filming and documentation to see if we would be a good candidate for this study. We were accepted into the program and it was at CAMH. All the parents came with their children and workers took the children away, while parents were escorted into a large room. Because parents were present, I had asked Aunt Mary to be my partner for the group. It was a great group of people. I felt like I was learning, but most of all I was getting a break from Jacob. It was good to be in a group of parents and educated staff. The presentations were great and the talks were interesting. I felt that each week was helpful. One day while I was playing with Jacob, I got up and went to the bathroom. When I came back Jacob was gone! He had taken a broom and reached up to the top of the door and swung the latch to the other side that locked the door. I ran outside and shouted for Jacob. There was no response. Jacob was a runner. Whenever he got the chance he ran… When he ran, he just went. Cars, Trucks, Bikes… It didn’t matter, He just ran. Jacob was just over two years old. Bright eyed, long eyelashes, Green eyes and a big smile. No taller than my leg. I’m 5”2 by the way. I looked in our backyard, down the street. I started to panic. The tears were running down my face. I started to go into the house to get our phone. I was about to call the police, when I heard this tiny voice from far away: “Mommmmmmmy!” I followed the voice that sounded like my Jacob. I had walked up the street this time following the voice. As I got five houses away I looked at the two-story house and started walking toward it. I could still hear Jacob calling me. There he was wedged between the front door and wooden door of our neighbors home. I was relieved to find Jacob. I debated whether or not to open the screen door. Everyday was a panic day, but not today. Today was the worst day, fearing for my son’s life. 12 weeks into the program, a man stood up in the session. He looked at me and announced: “Don’t you think your problems are because you are a single parent?” I looked at him standing and looking at me, I looked at his wife sitting next to him… I said: “Then why are you here?” Without disclosing any information I should say, I was very hurt, began crying and felt ashamed. How can someone’s words hurt so much? In one week we would be attending our last session. I wished that I could continue, but there was no continuing. When the study finished another group would be attending. I begged the psychologist for continued help. She was lovely. I truly liked her so much. There was something about being around her that made me feel really good. She told me that her mentor was a great doctor at SickKids© Hospital. She would contact her for availability & see if she would take Jacob on as a patient. It would be almost two years for an appointment. I was heart broken. As we spoke on the telephone I cried talking to the Psychologist. It was an emergency. I couldn’t wait 2 years! I had never heard of such a thing. I was distraught. The Psychologist called me and asked me to be patient. I tried. It wasn’t easy since everyday was so stressful. The telephone rang and it was a Psychiatrist from SickKids© that the Psychologist had been in touch with. After speaking to me, she gave us an appointment in 3 months; instead of 2 years. I was so happy. I was happy that I was not on a waiting list for 2 years, anymore. However, I wasn’t sure how I was going to get through 3 months at this point either waiting for an appointment. 10 minutes later the telephone rang again. Again it was the Psychiatrist. She asked if I could make it to the hospital on Friday, 3 days away. I told her I was ready to pitch a tent downtown if I had too. This was an appointment that I couldn’t miss. Arm’s tugged at me, “let’s go Dee!” The girls all laughed and smiled. They were all so happy walking down University Ave., for Autism. I felt my hands pulling my sign out of my strap from my backpack and holding it up high. I was celebrating a year of training, a year of demonstrating out side Queen’s Park Legislature and our amazing CN Tower. Here I was walking through downtown Toronto with all these women that live everyday with Autism. How proud I was to watch them together… I almost wanted to lock hands with everyone. It was the perfect morning. The sun was now shining and then the horns “HONK” “HONK”… I turned and there was Jacob with the window down of my daughter’s truck with a huge Canadian Flag on a pole, waving back and forth. Jacob had a huge smile on his face when he saw me. We all waved to Krystal and Jacob. We all met at a coffee shop and had our first rest. It was wonderful stopping and sharing our experiences of the morning. I was hoping that everyone would continue to walk with me. I was afraid that this was it! I was afraid that everyone would all say goodbye. We all gathered for photos and Mandy took a great picture of my children and I with our Walk To Ottawa sign. I felt so good having all my children with me. As we all gathered our belongings we started down the road, with our police escort. The two officers were amazing. They kept us safe and staggered with each other, taking turns being the leader. They were assigned to take us to the Toronto boarder. I was surprised because I thought I was only getting an escort through the downtown core. Over the past year I had spent several months gathering information, emails, mapping for this journey. I was very fortunate to have a strong police interest with my walk. I wanted this to be a good police story, and that is exactly what it was. By this time in the afternoon it was time to say goodbye to my friends, mothers and advocates for Autism. We all stood on a corner together and hugged. I was walking alone with our escort. I kept turning back and waving to all my friends. As I turned for the last time and walked up the hill that was it, all I could think of was finishing my first leg of the walk. I started jogging and it felt great. Darkness set in pretty fast, freezing rain was appearing too. As I reached Highway 2 and Highway 401 at dusk I looked around and traffic was building up. People were honking their horns. I wondered why? “Oh…” They were honking at me. A car pulled up and a big tall man jumped out of the car. I was sure he was calling me! “Dee!” I had no idea who it was. Then I realized who it was. It was Ron. Ron was a Child Youth Worker (CYW) from a Ministry School where Jacob used to attend. He said he was on his way home and couldn’t believe it when he saw me walking along the side of the road. Ron came out of the car to walk with me. He walked for quite some time and we talked about none other than about “Jacob”. Ron stopped me and did a small video. Ron said I had a great gait. He said I was pretty fast. I thought that was great considering how short I was and how tall he was. It was time for Ron to say good-bye. We said our good-byes and he assured me that I was not far from our first destination. I was getting so excited! The Toronto Police crew pulled up and rolled down their windows. It was time to say good-bye to the officers that took me safely on the first leg of the journey through Toronto. I was very humble to them. Durham Police were waiting for the exchange of the relay. I waved to the Toronto Police officers as they drove away. I felt so lucky to have this wonderful opportunity. I felt safe. In the distance I could see an amber light and then it disappeared. www.walktoottawa.org Twitter: walktoottawa FB: Walk To Ottawa

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#thishappened2minuteslater #temptation #stinks kept my hands on the cart & #movedon #proud #yes #Toronto #Ontario #Canada

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#andthenthishappenedthankyoulent #nousefortemptation #Toronto #Ontario #Canada #grocery #shopping

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Just when you turn the corner from the salad isle... Survived shopping downtown #Toronto #Ontario #Canada #handsdownturnedawayfromtemptation

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Happy Chinese New Year❤️ Toronto, Ontario Yorkdale Mall

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And this is were it all happens🎣 #icefishing #Autism #ASD

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Family Day 2015 We are in Brighton, Ontario There is a tournament for ice-fishing. Barb & Mike contact us & invite us to fish with them. It is hard to tell: To the right is about 80-100 people in the tournament ice-fishing. To the far left is a cute little blue house where Jacob spent his entire day fishing. No interest in the tournament & didn't bother registering. No fish were caught & Jacob wasn't to happy about that. Hoping to tell the big fishing story. Sometimes Inclusion just isn't meant to be🔚 Will post another photo🎣 #Autism #ASD #inclusion #family #child

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[walktoottawa]

January 15th, 2015

Written: February 15, 2015

January 15th, 2015

Bells ringing at my side, one step at a time. The journey begins with our parish community & my new rosary next to my heart. Embraced with protection, depth of words about Autism, I will return and share my story and always have a special place in my heart for my rosary.

Trying hard to remember all the places I stopped. All the new friends I’ve met throughout the past year & people that have signed our petition. I stopped at each store, restaurant & café to say Thank-you, Thank-you for your support, I am on my way to Ottawa now & this is it. Some stores where open but most were closed. I wasn’t disappointed, I was excited, excited to start my journey.

I started thinking about yesterday. January 14th, 2015. My dear friend Elaine who I’ve known for many years came over to say good-bye. She had many signatures on a petition that she wanted me to bring to parliament! She even brought can’s of nuts, gum, protein bars… an awesome care package with many snacks.

Elaine is an amazing person. She reaches out to so many people with kindness and looks for nothing ever in return.

One day I went over to Elaine’s home and asked her: Could you do me a favor? What is it? Would you help me gather signatures at a Mass at our church for a petition we have that is active in the House of Commons for Autism? “Sure”… what do I need to do? Without hesitation Elaine offered to be at our church for the 9:30am Mass. Elaine ended up stayed for the entire day. I was so grateful for her help.

The cold was brisk this morning. I could feel my scarf stiff below my nose and ice on my eyelashes. I knew today would be challenging because of the temperatures and weather changing from rain, snow and wind. The wind was holding me back. I was against the wind the entire way.

As I looked at my cell phone, I saw that I was early and then my phone shut down again, because of the cold. Always, everyday, my phone would shut down. I was heartbroken. The most important day and no camera! Did I say “Heartbroken?”

I approached Queen’s Park… It felt different today. I had such excitement crossing the park path and road. As I walked around the side of the building I looked at the Lt. Governer’s staircase and recalled my time well spent with many people throughout the year.

I started to think about Lt. Governor David Onley when he talked to me for a long time back in the spring of 2014. Not expecting to have this opportunity I was overwhelmed with the talk that encouraged me to raise my child to his full potential. I had walked to the CN Tower April 2nd, 2014. It was World Autism Awareness raise the flag event with Autism Ontario at Toronto City Hall. For the first time I decided to go to City Hall and see how this raise the flag event was.

The speeches were embracing, unforgettable, encouraging.

I remembered sending out a tweet on twitter that week asking Ontario Ombudsman Andre Martin if he would wear blue to the event. I noticed that he was attending. As I stood listening to the speeches and they ended, Andre Martin asked if I was Dee? Of course I said: Yes. He asked someone to take our picture and he whispered into my ear: “Is this blue enough for you Dee?” I looked at him with a big smile and nodded my head. He had a beautiful powder blue shirt and tie on with a blue suit. I am not sure if he will ever know how much that meant to me on that day.

We were all asked after the event to celebrate in one of the City Hall rooms. As I went in the room, there he was! Lt. Governor David Onley. Nobody was there yet. I took advantage of this moment and introduced myself. We talked for a longtime. He even stood up and we got our photograph taken together. I cried when he talked to me. His story was truly wonderful and the way he told his life story was so embracing. His love for others really shone during our conversation.

That day I walked from my home in Etobicoke North to the CN Tower, then to City Hall and then home. It was my first try at walking over 60kms. I did it! But truly paid for it the next day. Exhausted and in severe pain. But in my heart I now knew that nothing was impossible.

As I turned the corner of Queen’s Parks Legislative Building I walked to the front where I didn’t see anyone! Oh, No… what time is it? Where is everyone? This is horrible… It was only me!

This well dressed young man approached me. I had never seen him before. He introduced himself; his name was Christian and he was from Autism Ontario. I was so honored to meet him and that he was going to be a guest speaker at our Kick Off at Queen’s Park!

Then I saw my friends walking towards me. I could feel my eyes filling up with tears. It was Clara, her husband John, Paola, her husband Roman & Mandy. It was so bitter cold out. My eyes were actually starting to freeze. Sticky.

We had started a parent group for two digit numbers for Autism. Meaning 10+ years old. We found that there really wasn’t much support for older children and we wanted to have a support group. So we started a group of our own.

Our children are so different from each other’s. They range from different ends of the Autism Spectrum. They each have their own gifts, experiences and potential. I truly love being around the many different needs. I can relate so much better to Jacob’s needs and goals. It is so helpful to know that I am not alone on this journey.

When I announced that I was going to be able to speak at our church St. Benedict’s and gather signatures for our petition, every parent in our group said: What time should I be there? They stayed and gathered signatures and even spoke at the Italian Mass! Bravo; Paola!

Then I saw MP Gord Brown Progressive Conservative walking up the Queen’s Park parking lot. It was so good to see him. I met MP Gord Brown back in December 2014 at Tree’s 4 Children & Paw’s for Ethan charity event. The event was at Maple Hurst Manor.

I must say; I was honored to be asked to speak at this event by Lindsay Pennell on Twitter. I accepted the invitation right away. When I saw that a man that I truly admired would be attending this event I jumped up and down!

That man would be Senator Jim Munson. But I will tell you about Senator Munson another time.

Just before the event for Tree’s 4 Children started, I was standing talking to Senator Jim Munson. MP Gord Brown who I had only met briefly came up to me and handed me his business card. He said: “I want to help you!” No hesitation at all. “Please call me.”

Well if anyone truly knows me, I did not call. Everyone knows I never accept help. However, my telephone rang on Christmas Eve. It was MP Gord Brown. I am glad he didn’t see me face to face in conversation. I was jumping up and down with excitement. Have you ever been so full of stress that every door seemed impossible to open, but you still put one-foot in front of the other and carried on? Well that is me. Always trying to do everything on my own, regardless of people reaching out. I honestly don’t know why I am so strong willed, like this?

Within a week, MP Gord Brown had a team of experts from his main branch reaching out to hotels across our South Eastern Province asking for help to get my son and I a room for every night on this Trek to Ottawa. Telephone calls, Emails, Texts… I was planning an incredible agenda. It was no longer a police journey, now it was a lodging journey.

Soft-spoken MP Gord Brown continued to call me often. Checking in to see if everyone had confirmed a night in his or her town/city. Who was this man? Where did he come from? Why would he want to help me? Trust? Yes, I have trust issues.

A taxi pulled up in front of Queen’s Park Legislative steps. Out walks a familiar face. It was Heidi. I met Heidi on Face Book. She happened to see that I was walking to Ottawa in 2015. Here again is the Trust issue… She offered to help me. She said I am an expert at Management planning. (Ok, but why would you want to help someone like me?) I caved and said ok, here is what I need… it was amazing. She exploded with help right left and centre. OMGoodness, where did this lady come from?

Heidi said to me, what are you doing this week-end? (It was the week-end before our big Walk To Ottawa) I said: “We are gathering signatures at our church for our Petition for a Pan-Canadian Autism Strategy. “Do you need any help? But, I’m not Catholic!” Heidi exclaimed. She attended all Masses… as I looked over at her, every time, she was full of tears. Tears of such “Joy”. She embraced all the people signing our Petition. It was truly momentous.

As I turned around officers from Toronto Police 23rd division approached me. They wanted to talk about our route. I was so excited that we were getting an escort! Thanks to Superintendent Ron Tavener for meeting with me and corresponding with OPP and other police chief’s across our province to plan a safe route. Now my excitement was getting to me!

MPP Lisa MacLeod Progressive Conservative came out of Queen’s Parks Building to give well wishes. We hugged and she said: “Be safe, good luck.” It was really wonderful how many people were surrounding me.

MPP Steve Clark Progressive Conservative approached our group too. It was so good to see him again. He is always so positive and smiling. Even in the coldest of weather.

Kathy Carsley founder and director of Unity for Autism approached us next. She was with her wonderful son Lee. Lee announced that he was his mother’s security. Lee was excited that his mother was asked to speak at our Kick Off.

Kathy is really an inspiration to me. I only met her last fall at her annual charity event for Unity for Autism. Kathy asked me to be a guest speaker at her annual Golf tournament where I would deliver my first speech about my family and the need for a Pan-Canadian Autism Strategy. We have since become friends and fight everyday for change.

MP Dr. Kirsty Duncan approach’s me with Chris and his dog Duke. This partial team means the world to me. They made me feel like every step I took for the past year was just as important as each step I was about to take. I have never felt so important as I have by this team in the past five / six years, in my whole life.

Our small crowd gathers and security at Queen’s Park Legislative Building rolls out the podium, microphone with speakers. It is now time… Time to start what we came here for… Our Walk To Ottawa.

MP Dr. Kirsty Duncan Etobicoke North who was the MC for our event approached the microphone. I was overwhelmed with all the amazing speeches being delivered, one by one. Each speech I was truly in aw.

An arm cuddled around me. I looked up and there was my dear friend MaryBeth. How wonderful for her to be here at our Kick off. As I looked over the crowd, there stood my friend Ursula. Ursula and I have spent many days together talking about my walk and sharing coffees often, planning and sitting on the bench!

MPP Dr. Shafiq Qaadri Etobicoke North & Parliamentary Assistant to our Premier of Ontario Kathleen Wynne approached the microphone… as I turned around and looked for my family; Tim was at my side. I felt a sigh of relief and I listened intensely. I started looking at everyone. It was amazing seeing all the people listening, speaking, and standing in the extreme weather conditions. They were just not words… They got it! Everyone was definitely on the same page. We all agreed that change needs to happen for all Canadian’s affected by Autism.

We all gathered for a group photo and then started our journey. It was wonderful having everyone walk together for the first leg of our Kick Off down University Ave.

[walktoottawa]

http://ottawacitizen.com/news/local-news/etobicoke-mom-walks-to-ottawa-in-frigid-weather-to-shine-light-on-autism

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http://youtu.be/DkkgLsQ7MdM

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http://www.parl.gc.ca/Content/SEN/Committee/391/soci/rep/repfinmar07-e.pdf

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http://openparliament.ca/debates/2014/10/29/kirsty-duncan-1/

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Ok, so this makes up for everything. How many [14YO] boys will have their mom as their best friend? #Autism #ASD #PanCanAutism #greatkidsliveonthespectrum #challenging #moments #love

[walktoottawa]

There's always time⏰; to ride! Jacob my Hero, my friend, my son. Never a dull moment...