What is your name and where do you live?
My name is Deborah Nickerson and I live in Richmond, Virginia
What is your website?
My website is titled “Pipecleaner Dreams.â€
What are your kids’ names, ages, and disabilities?
I have four children. My oldest and my birth son is Chip. He is 17 years old, and an exceptionally empathetic person. I have been a single parent since Chip was 4 months old. When he was 4 years old, I decided to adopt. The first child I adopted is my daughter, Ashley. Ashley is 13 years old and is my wild and crazy child. She is diagnosed with deafblindness, epilepsy, ADHD, asthma, a rare condition called juvenile xanthogranulomas which causes tumors to form (she currently has three brain tumors), and fetal alcohol syndrome because her birth mother was an alcoholic. A few years after adopting Ashley, I adopted my daughter, Jessica, who was 9 years old at the time. Jessica is now 17 years old. She was born healthy but at 4 months of age was diagnosed with brain cancer. She had a tumor removed followed by 2 years of chemo and radiation. That treatment left her with a moderate intellectual disability as well as hemiplegia — limited use of the left side of her body. However, those things pale in comparison to her issues of mental illness, brought on by her frequent moves through the foster care system, moves which I believe included both physical and sexual abuse. Finally, about 3 years ago, Corey, now 15 years old, joined our family. I can’t finalize Corey’s adoption because his birth mother will not relinquish her rights, although she does not want Corey, and because Corey is a member of the Cherokee tribe, and the tribe will not give permission for his adoption. Corey is diagnosed with ADHD and Asperger’s Syndrome.
Do you blog about their issues? What do you personally get out of that?
I do blog about my children’s issues. Blogging is a sounding board for me. So many others in the blogging world have faced issues similar to mine, and I really enjoy reading comments from those people. Blogging and commenting is information sharing at its best!
What does a typical day consist of for you and your family?
My days start very early at 4:30am. While my oldest children (Chip, Jessica and Corey) are capable of getting themselves ready for school, my youngest (Ashley) does require some assistance. The first thing I do is get myself ready. Then I wake the oldest, and finally assist Ashley. Ashley takes a lot of medicine, and that is administered through a G-tube. Medicine prep takes a while as does preparing breakfast. I do make sure the kids all have their school work and backpacks ready the night before, and we all pick out what clothes we are going to wear the night before.
After getting everyone off to school, I head off to work. I am a computer engineer for a state agency, and my day is very busy making sure everyone’s computer resources are available and running smoothly. I rush home about 4pm to meet Ashley’s bus and that is followed by dinner, baths, homework, and if I am lucky, a few minutes to myself before I collapse into bed!
Organization, routine and schedules are key to keeping our household running smoothly. There are so many doctor and therapy appointments in addition to everyday family issues which require me to keep a master schedule close at hand at all times.
How have their disabilities affected the children specifically? And the family as a whole?
Corey’s disabilities are mild, and have not had a tremendous effect on either him or the family. Given his background, it is surprising to me sometimes that he hasn’t been more impacted emotionally or behaviorally than he has. We have had a long adjustment period as he has integrated into our family, but with the help of a family counselor, we are working through some of those issues.Jessica’s mental illness has had a profound effect on the family. She is diagnosed with reactive attachment disorder, a disorder that is common in older adopted children. It manifests with outbursts of rage and aggression. She has caused me many scrapes and bruises but the worst was when she broke two of my ribs during one of her rages. I can never leave her alone around my youngest, and that constant vigilance is difficult for a single parent. Fortunately, my boys are now old enough to help with that a bit. Jessica’s mental illness combined with her intellectual disability means traditional talk therapy doesn’t work very well. I have yet to find what does work, but I will not give up until I do.
Ashley’s disabilities, being primarily physical in nature, have meant lots of home modifications. And, because of the fragile nature of her health, I have to spend a lot of time on personal care for her. I also act as her interpreter since she only communicates through sign language.
Life in our family is certainly never dull!
How have their disabilities affected you as a person and as a mother?
I am a completely different person that I was before my children. They have all taught me so much — patience and understanding to start with — and because of them I have had to become more outspoken, more of an advocate to ensure they have their needs met. I have learned more about their specific disabilities and about disability culture as a whole than I ever believed possible.
As a mother, my children’s needs are so very different, that sometimes I feel pulled in many different directions. But I believe through my example, my children are learning empathy, acceptance and the value of diversity.
What did you do right? What do you wish you had done differently?
Before adopting and bringing home each child, I researched their specific disabilities. I found the right doctors, and put the appropriate supports in place. I connected with support groups and other families in similar situations, and all that has made my job of parenting easier.
If I could do anything differently, it would be to figure out how to work in more family vacations. We’ve only taken two vacations over the years, and that time spent together without the worry of school and work, was a wonderfully recharging experience for us all. But, given the financial, medical, and educational demands we face daily, vacations are hard to come by.
What do you want other parents fighting the same fight to know?
Believe in your children. Never place limits on their abilities. Understand your rights and the rights your children have, and never let anyone undermine or take away those rights. Even though ensuring their rights may require a fight, the final result will be more independent, fulfilling lives for your children.
Thank you, Deborah, for taking the time to do this. The rest of you? Go visit her today!