During my journey through life growing up and moving around I have had the opportunity to meet and admire many inspirational women along the way. I think about these women often. Many have come into my life just when I needed them most and have made an impact on me one way or another. Many haven given me strength in a moment when I most needed it.
None are Nobel Prize Winners or Mother Theresa’s but they are courageous heroes in their own life living passionately day to day. I’ll be dedicating a “Women Who Inspire” feature on my blog to showcase and celebrate these women as they deserve, with the hopes that they and others around them get to know how awesome and impactful they really are.
My first feature focuses on a long-time friend of mine, Jackie Reynolds.
I’ve known Jackie for years. We grew up in the same city and I was very close friends with her older sister. I was often at their house over the years, or accompanying their family on vacations, having sleepovers and growing up.
As friends often do we all grew up and grew apart. I completely lost touch with Jackie for a long time. I believe through Facebook I found out that she, like me had a daughter who was on the Autism Spectrum.
To be honest, when I found out I was glad. I wasn’t glad that her daughter had been diagnosed, but I was glad to have a friend. Here she is, a girl, who I grew up with, from my hometown going through the same thing. I finally had a comrade!
Jackie has been there for me to reach out to time and time again for questions, supports and a sounding board.
I am proud to know Jackie, I am proud to share in a tiny piece of her journey and if there is even just the tiniest reflection of myself in her as an ASD parent I am honoured. I think by virtue of this interview process, and the blog it will also hopefully shed more light and understanding about kids on the spectrum, that every kid and journey is different and how impactful early-intervention and therapy is invaluable.
Q: Where are you currently living and with who?
A: I live in Toronto, ON with my husband and two daughters Addison and Payton, and our cat Buddy
Q: What do you do for a living?
A: I am a compliance advisor for a financial company
Q: What is your passion?
A: Cooking
Q: When and how did you find out that Payton was on the spectrum?
A: We always knew something was a bit off with Payton, she was not meeting the milestones that her older sister Addison was meeting when she was younger. However, we were a bit reluctant to acknowledge this as she was meeting all her mobility milestones (crawling, walking, etc). It was her speech that was the most telling. At 21 months when Addison at that age was speaking in sentences, Payton only had one word, if any.
Q: What were some of the signs that Payton wasn’t “typical?
A: She was very particular, she only liked to sit in her spot on the stroller, in her car seat in the car, she got very jealous if I held another baby in front of her. If I got angry with her, she would self-inflict and bang her head on the floor, she did not respond to her name when called, rarely gave eye contact, limited to none language, she did not point. She was particular of the type of clothes she wore. For example, in the winter we took a trip to Mexico, I did not pack any warm pajamas or long sleeved shirts as it was going to be warm. Payton was not prepared for that transition. Every day was a battle to get her dressed and we had to endure long periods of cries and screams. If she wanted something she would do hand over hand and guide me to what she wanted. She did not engage with her peers nor did she care what they were doing. For example, we had a birthday party for Addison when she turned 4 and a princess was there, all the girls where engaging in the game in a circle, Payton just walked right through the circle not paying attention to her peers to grab a cheesy from the bowl and then she walk away. She constantly walked on her tip toes and would sit in the swing for hours if she could. She was in her “own” world.
Q: What is Payton’s relationship like with the family? You? Your husband? Her sister? Extended family?
A: Payton in the beginning did not have a strong relationship with her extended family as she rarely engaged with them and it was hard for them to try and find a way to get to her. She was close with me, Brent and her sister. She did and still has a special bond with my father, he would always take time with her and he spent many hours pushing her on the swing, doing what she loved, and I think she remembers that and will always appreciate that. She also went through a very stressful phase of attacking her younger boy cousins. It was very stressful at family gatherings because you never knew when she would lash out at them so I always had to be by her side to diffuse the situation.
Q: What is your biggest fear?
A: That she will never be self-sufficient (get an education, have friends, live on her own, hold a job)
Q: What is your biggest challenge?
A: Well, I would like to think my biggest challenge is over. This is why. When we got the diagnosis it was a big blow, but with any challenge for me, I put myself to work to find out the best options for Payton. This included enrolling her in daycare, putting her on the GF/CF diet (that lasted 6 months – it did nothing), setting up speech therapy, signing up for all the programs and finding an ABA therapist.
Our biggest, but I must say most rewarding challenge has been Payton’s ABA therapy. We started her therapy in April of 2013 and never looked back. We have a fantastic therapist named Susan Pike. She is great at her job but she is also tough as nails. As what I learned early on is as parents we need to adopt the training and follow through on the ABA teachings or what Susan works on will go to waste.
Payton is a completely different girl than when Susan first met her. However this change was NOT easy. For the 1st six months of her therapy Payton cried through the whole 3 hour session (she had 15 hours per week then). She was defiant not to learn and not to have Susan take control. It was extremely hard to listen to your own child cry for that period of time. Susan was not hurting her in any way, nor was Payton being harmed. Payton was just stubborn. However, then things changed, she started complying with Susan’s demands, followed the direction of the therapy and that’s when Payton’s world started to become our world. She started to let us is. This happened in the following ways:
- She now talks in full sentences and engages in social dialogue
- Engages in play with her peers
- Listens to her teachers and follows direction
- Potty trained
- Still walks on tippy toes but only 50% of the time
- Writes her name, draws, writes letters
- Verbally communicates her needs
- Adjusts to change and new surroundings
- No more clothing issues
Now, this was mostly achieved with Susan and but it was also on Brent and I and also my daughter Addison to follow through, we took those teachings and followed through at home. That was hard, especially when you are dealing with an episode in public, you want to give up but you must follow through even if it results in stares of pity in your direction.
One note about Addison, the best thing we could have ever done is had Addison first. She has been the best teacher, friend and sister to Payton.
Q: How has this experience changed you?
A: It has humbled me, especially because I know Payton’s story of success is not over and it is only going to get better. That is not the reality for a lot of these kids. Some parents don’t have the resources accessible to do early intervention, some are in denial and wait too late to effectively inflict change, and some are parents of children no matter the therapies you do or what you do at home, their child will not improve. Payton still has a way to go, but I have no doubt in my mind that she will be a successful, independent, strong willed girl.
I feel for those families that will never experience the gains we have, and it makes me feel sad for them that their struggles will continue into adulthood, I don’t think that is fair. Life really is not fair in those cases.
Q: What is the single most defining moment in your life?
A: With Payton? When I quit my job to focus on Payton’s development and meeting Susan Pike.
My personal defining moment, I don’t think that time has happened yet. In a way I feel I have not met that point yet on really defining who I am and what I am meant to do.
But I have one that comes close. My best friend was supposed to go to a sports camp over the summer. She got sick and since her family could not get a refund, I took her place. It was from that experience and talking about that experience with one of my high school teachers that fall convinced me to do something I never thought I could do. Apply to be a camp counsellor. I know it sounds cheesy, but I idolized those counsellors and to think I could become one well, was amazing. I applied, and got the job and was a counsellor for 2 summers. That experience showed me if I worked hard for what I wanted, I can get it. I can become that person.
Q: What are your hopes and dreams for your girls/family?
A: My hopes and dreams for Payton is this diagnosis does not define her, it just shapes her. Like being and introvert or extrovert. Yes Payton is Autistic, but she also has green eyes and brown hair it is part of who she is and she is no different from you or me because of it.
My dream for both my girls is for each of them to reach for their goals in life, if it involves university great, or if it is a trade even better. I just want them to be happy and fulfilled and for them to achieve that fulfillment in their own way. Not in how I would perceive it to be achieved.
Q: What is the hardest moment you’ve ever been faced with and why?
A: You know, I don’t think I can answer that question. Because, after I have gone through something that may be considered hard, I look back and am like, I did it, I survived it, it was not so bad. I hope I am not jinxing myself here…
Q: How have you, if at all had to adjust your lifestyle, hopes and dreams as a family and parent?
A: The biggest adjustment initially had to quit my job; I am not the stay a home type of person. I think fate realized it because I ended up getting offered a job where I could work from home and worked around my schedule. If I did not have this job, I don’t think I would be as happy as I am. I am not the type of person that gets fulfillment just through my family, I need more, I strive for more and my independence.
But one thing I will say, I have not adjusted my lifestyle too much, it is who I am. I still go out on dates with my husband; I take time with my girlfriends; I take time for my professional development; and I also take time for my family.
Q: How has your family’s journey impacted your marriage/ relationship with your husband? If at all?
A: Of course dealing with any child that has special needs is very hard, and our family has been impacted. But what has held us together is we are both on the same page on what needs to be done to support Payton. If we were not unified on that front then we would probably have deeper issues. But again, I consider my story a happy one, our challenges were temporary. Life is getting easier for us and for that we can relax a bit more. Who know what challenges will bring in the future as Payton develops and gets older but I feel confident if we have made through these challenging times, we can do it again.
Q: What is your version of “heaven” or your “happy place?”
A: A clean house and ordering takeout
Q: What is your guilty pleasure?
A: Booze and girls nights
Q: What is your favourite song?
A: It changes, but at this moment, Highway by Audioslave
onthemmmove 