Feb

19

Featured Blogger

Posted by preciouschild

February 19, 2008 |

donna-ross-jones-headshot-2.jpgToday’s featured blogger is Donna Ross-Jones of Autism Day by Day.

Interview:

I am Donna Ross-Jones and I live in Studio City, CA.  http://autismdaybyday.blogspot.com is my blog. I have two children, my daughter Evyn is 14 and my son Nicholas (who has autism) is 9 years old.
I blog about reality. I share our life experiences in hopes that people can connect, know they are not alone, get an occasional laugh and some valuable information. The blog can be a tool to help families who are raising children with ASD, but also to help the people who interact with our children better understand what it’s like to live a day in our lives. I

recently had a new therapist read it when he joined the team, so he could better understand our family and history. His response was “it said so many things I know my other families go through and it put into words and pictures the experiences in a way that it really helped me to understand.” In the blog I document information in what I call “real time.” I describe the experience and then I follow it with what I learned from legal facts to resource information to life lessons. I chose this approach because when Nicky was diagnosed I felt inundated by themassive amounts of information I got from therapists, educators, lawyers, advocates, parents. I wanted the information, yet I was so overwhelmed with my day to day life, I couldn’t take it all in. I want this blog is an easy r

eference for people. I stay away from clinical language and long lists of boring data and tell it like it happened for us. The information is diverse and people can search the blog based on their life experience or questions. “Planes Trains and Automobiles” chronicles our trips to the airport which is filled with perils unimaginable to the neuro typical family.” “Siblings, What do they Understand?” where I talk how I learned that my daughter understood the magnitude of Nicky’s disability and how it would impact her forever. “Can Schools Do That -What Rights Does My Child Have” which details parents legal rights in the school setting in an easy to read format. “Play dates - now that’s Scarey”

talks about our success’s and failures with play dates and my emotions around play dates.

SNP: What do you personally get out of that?

My child had a severe illness, and I was basically sent home to care for him, grieve for him, and learn about his illness ALONE. I felt like I had no control over what was going to happen and I was furious. That anger and frustration could have made me a bitter angry and even ill person. I had to find a way to keep from going to that place and the way I found was giving. So, what I get is I get to give, which gives me a feeling of control over my life. I don’t have the power to take away Nicky’s autism, but I can control how I handle it and how I use the hand we were dealt for good. Again, the first few years with

Nicky were torture because getting information was so difficult. I promised myself, that when I got my head above water, I would do all I could to make the journey easier for other families. I spent hours in waiting rooms with other parents and we shared information. I quickly learned that when I was helping people I didn’t feel so powerless. That is why, together with Areva Martin I co-founded Special Needs Network (the largest organization in CA established to educate and support families in under-served communities impacted by ASD,) that is why I service on the Board of Directors for the North Los Angeles Country Regional Center, it is why I have donated hundreds of hours of service to committees, boards and state and local task forces related to ASD and that is why I began writing the blog. So what I get out of it is easy. Helping people brings me joy and helps me to know that I am not helpless. That makes me a happier person and a

better mom.

SNP: What does a “typical” day consist of for you and your family?

That’s Funny. A typical day. I gave those up when Nicky was born. Now we just have days. Day’s consisting of what happens and handling it. As a single mom, who runs a business, takes care of two kids and volunteers you already know I’m busy. Add to that Nicky’s daily therapy (7 days a week) and my girls busy high school schedule and no further detail is needed.

SNP: How have their disabilities affected the children specifically?

Nicky has one sister, Evyn. Having a child with a severe disability changes the family dynamic, period. Expectations of how things should be and perspectives are shifted because the concept of equality and balance is removed. Nicky’s disability requires a

tremendous amount of attention from therapists to doctors to being watched like a two year old for safety reasons. That is just how it is. Nicky get’s so much attention she feels like she isn’t getting her share. It’s frustrating for her that Nicky has to be watched all the time and that I seemingly respond immediately to his needs, and not to hers. All the understanding of “why”, doesn’t take the place of having equal access to mom and I know that’s a major sacrifice.

SNP: As for the family as a whole?

People often say to me “I don’t know how you do it” or “Wow it must really be hard.” My response is, probably. But I try not to think about it that way. I just stay focused on how fortunate I am, and I remind myself all the time, for as challenging as it may seem there is always someone who has it harder. And, it’s normal for me now, it’s just what I do. I love my family and I know they love me and we have so much that I believe as long as I can help keep our focus on “what we have” and not on “what we don’t have” we will all be fine. Let’s face it everyone get’s something. That’s life.

SNP: What did you do right?

What I do right is I get up everyday and I do the best I can. I try to stay focused on what can be done and not get caught up in the challenges. Lord knows between Nicky’s medical, educational, therapeutic, and social issues and a teenage daughter I am given lot’s of opportunities to practice patience and forgiveness without giving up the fight for what the kids need.

You asked “What do you wish you had done differently?” I don’t have an answer to that question because I don’t think that way, it would not be healthy for me.

I can say that sometimes when I am alone and feeling sad I begin to question my actions, and I have learned to stop myself and if necessary forgive myself. I know I’ve made mistakes, but I also know that I have done the best that I could do and that’s where I keep my focus. Not on what I could of done, but what did I learn and what I am going to do.

SNP: What do you want other parents fighting the same fight to know?

We are not alone, and it’s going to be okay. It’s not what we imagined when we were pregnant, but it will be okay. We will all be okay, we can handle this.

We have to take care of ourselves. I remind myself often that I have to take care of me

too – even when it seems selfish. Caregivers die earlier than other people from the daily stress and strain. We each have to find a way to take care of ourselves, and we can each define what that is, but we have to be kind to ourselves. If we don’t, the stress will kill us and we won’t be here to care for the people we love.

SNP: Anything you else you wish to share?photo-nicky-and-donna-2007.jpg

I know that our lives, day in and day out, defy comprehension to those who have never experienced ASD first hand. People listen, and they try to help but unless they have lived with us, or had a child with a severe special need they can’t totally comprehend our lives our emotions. How could they. I know I could never have imagined this! My hope is that this blog will give those who have never experienced ASD a peek into our lives and with bring a little humor, perspective, and optimism to families to help them feel better while getting valuable information. I hope I am able to do that.

THANKS for listening!

Thank you, Donna for doing this. Go visit her today!


Comments

1 Comment so far

  1. Steph on February 19, 2008 10:14 am

    I may be biased, but Donna really is a wonderful mom. She and Nicky made it easier for me to deal with Matthew’s issues, and eventual diagnosis. She does whatever it takes to get help for her son, and I completely respect her for that.

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