Real Moms Share: Carmen Noonan shares her thoughts about her “learning journey”
Carmen Noonan is a wife, mother, volunteer, community activist and the “CEO of her household”. She is contributing to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her son, Patrick, who has autism. We asked her a series of questions; some serious and some “just for fun”. See what she said….
PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and your family.
CARMEN NOONAN: Patrick was welcomed to our family on a cold evening on February 3rd, almost 20 years ago in Fairfax, VA. He was born 11 days earlier and was very healthy and weighted 10 1/2 pounds. Also, he past the Apgar test with flying colors: a perfect 10.
He joined his brother, Henry, who is graduating from FIU in December 2013, with a double major and sister, Sarah, who now lives in VA. His dad, a retired attorney from the State Department, is enjoying the beautiful beaches in Vero Beach, Fl., and is Patrick’s body-driver these days.
Back in the early years of marriage, I made the decision, with my husband, that once our first child was born, I will switch careers and become the CEO of my household and devote my knowledge, time, energy and love to my family and the community; 22 years later I still enjoy my role and never regret not having a pay check at the end of the month. My new “career” is possible by having a very supporting husband. I am not talking just about the financial support, it is about a working partnership, the emotional understanding and the freedom that he allows me to experience, so I can attain my goals in life and be a better person, therefore better wife, parent and active member in our society.
PSN: Tell us a little bit more about Patrick’s diagnosis and personality.
CN: The best way to describe Patrick is someone with a big smiley face and a heart full of love. He is kind, compassionate, always finds the best in people and enjoys making people feel love and feel important. He works hard since learning does not come easily to him. He is a self-learner and a very responsible person. He is willing to try new activities and has big dreams for his future. His journey with Autism started right after the MMR vaccines; he stopped talking and began hitting his head against the floor, lost eye contact and overall his typical develop milestones stopped or even regressed. For more than two years we visited different doctors in the DC area with no firm diagnosis. At the time he did not meet all the criteria for Autism diagnosis until the word “Spectrum” was added by his 5th birthday. The team of therapies started by his second birthday. The list includes: speech, language and occupational therapy followed by music therapy. By the time he was 6 years old, we made a radical change in his diet and switched to a Gluten and Casein free diet and work with a wonderful allergist, Dr. Layton, for his bio-medical treatment. What a difference the new treatment made in our lives. Patrick slept through the night for the first time in 6 years and the recovery process began. By the time he was 10 years old, we learned about RDI. We added to his list of therapies and it helped tremendously with his social interaction. Last year we attended a training on MNRI but have not yet fully implemented this into his therapies.
PSN: Share with us something YOU, personally, had to overcome by being a mother to a special needs child?
CN: Not sure if this will answer your question… Henry (my husband) and I always wanted to have 5 children. After Patrick’s regression (before his second birthday), we had to postpone our plans for having more children and eventually accepted (and are content) to have a “smaller” family of five instead of seven. At times Patrick’s care, and the extra financial expenses, did not allow us to add more family members as we wished.
I overcame my personal emptiness of completing my family by becoming a very active member in our community. I help other families with special needs, and I mentor younger girls through Big Brother, Big Sisters. It is not the same as enjoying your own children, but, it helps a lot.
PSN: What kind of life do you envision for your child’s future?
CN: Patrick is 19 years old now, next year he will graduate with a special education diploma. He already has earned some credits towards a regular diploma, so he will take full-time online classes and try to earn his high school diploma by age 22.
I envision Patrick holding a job, living independently, getting married, and continuing to enjoy his life and music.
PSN: What has been one of the biggest obstacles/challenges raising your child?
CN: The biggest challenge/obstacle was accepting that typical person might always see the disability in my child instead of the whole child and his abilities. It is very sad when you invite typically developed peers to your home, but they do not want to relate with your child because of his disability.
PSN: What has school/education been like for your child?
CN: It has been a very interesting learning journey, but overall a good one. A lot depends on teacher’s expectations, communication styles and the collaboration of the school administrators. The partnership with the school system depends on the acceptance that we, “the parents,” know our children best, and are the only team members who are present year after year at our children’s IEPs. We as parents must do our part by learning how the system works and keep up to date information about the issues that our children are facing.
PSN: What is something your child does that you’ve come to appreciate as a gift?
CN: I love to wake up to Patrick’s singing every morning. He has such a beautiful voice, I even like when he sings classic country music (not my choice), but I do appreciate his special gift 🙂
PSN: Do you have a proud moment you would like to share with us?
CN: The one that comes to my mind is how well he tolerated his IVIG treatment. He has to have the infusion once a month for about 6 hours at the time (for the past 8 months), to treat a condition call PANDAS, it stands for pediatric autoimmune neuro-psychiatry Disorder Associated with Streptococci.
He cooperates all the time by keeping himself busy watching movies, reading or just listening to music. I would love to share about our experience related to PANDAS in a future issue.
PSN: What has been one of the biggest obstacles/challenges raising your child?
CN: It is a learning process; 19 years ago there was no much information available. I wished I had known more about effects and risks of vaccines, perhaps I would have spaced them over time or avoided many unnecessary vaccines like Hepatitis B, or chicken pox, to name few. To be clear in this controversial issue of vaccines, I am just saying, in our case, vaccines played a major role disrupting Patrick’s neuro typical development, his immune system and cognitive abilities as well as communication.
PSN: Are there any special resources you have found that have helped you on your journey? (local or web)
CN: I joined a local support group for parents while living in Virginia as well as the Puzzled Families of Indian River County, Fl. It is important to share the joys, as well as the challenges, of raising children with autism with other parents. Since becoming a parent of a child with autism was not a choice, I was not prepared. But, I embraced the challenge, and the learning journey began. I read many books on different issues related to autism; I enjoyed attending workshops and national conferences. We built support teams with our private professionals and the school system to make sure everyone was well informed. Recently, I started attending webinars which are a nice way to be up to date with information without leaving your home. The best part of that is that it is FREE.
Challenges come in different types or forms. For us, it is autism. We embraced it, and learned a lot, but, my child is much more than the autism he has. He is a wonderful person with so many gifts and blessings. These days, there is so much more accurate information available about autism. Recovery is possible, or at least you can minimize the symptoms, to have a better quality of life.
PSN: Carmen, thank you so much for sharing your experiences with us and the lessons you have learned raising Patrick.
Read More: Real Moms Share
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This post originally appeared on our November/December 2013 Magazine