We were the proud parents of one extremely active baby girl, a child that was up and moving around in her crib at daybreak. She was so active, Joi made us get up when she was ready to start her day.
Three years after Joi was born came Dorothy. I just knew she was going to be a boy as this was my last chance to have that son that every father wants. At least Dorothy favored me and had my laid back style. She however was nothing like Joi. She would lay in her crib for hours and seemed to be content with herself. My reaction was, “Yes there is a God!”
But many months went by and Dorothy was not moving much. Joi continued to be sharp and quick. My wife began to think that something was wrong with Dorothy, and after much pain and knowing in our hearts that all was not quite right, we took Dorothy to the Delaware Curative Workshop to be examined. One test after another we waited to hear the news. At 16 months of age, Dorothy was diagnosed as having a developmental delay.
What is a delay? Why did my child have be less than normal? What did all of this mean to Dorothy and our family? To these and many other questions we would seek answers. For two and one half years Dorothy saw innumerable therapists. In that time many things happened to me. I remember taking part in a parents support group at the workshop. It was there that I and other parents talked about the early pain of having a child that was different. One dad and five moms. Somehow it didn’t seem odd being the only male in the group. Many times a mom would say, “my husband wouldn’t do what you are doing; you are special.” That made me stop and think just what I was doing. All I could see was what had to be done. Would not anyone do what they saw needed to be done for their own child and family? Because I carried Dorothy to most of her appointments, I met a lot of new and interesting people. Soon I was asked to sit on this committee and that board. In time I was appointed by then Governor Mike Castle to the Interagency Coordinating Council for Infants and Toddlers, Birth to Three. Two years later I was elected vice-chairperson; then chair. I have flown all over America advocating for children with disabilities and their families.
I have found my life’s work. I have stopped asking why me. YES ME!
This journey has led to the development of Ability Advocates. Our focus is on relationships. We arm families with hope and the knowledge to cultivate and grow meaningful relationships with their child’s educators.
This story of my daughter, Brooke, occurred two decades ago and I remember it as though it was yesterday. Brooke was born via emergency C-Section when I was 28 weeks pregnant. She spent much of the first year of her life in the NICU and PICU at what was then called the Medical College of Virginia. It was very surreal – going to back to work weeks after the delivery; visiting Brooke at lunch and again in the evening; hanging out with friends…almost as though my husband and I hadn’t just had a baby, when in fact it was a physically traumatic event for both Brooke and me.
When Brooke was about 22 months old and over some major medical humps, we had our first appointment with a pediatrician who was a developmental specialist. After the doctor did a routine check of Brooke, she said two things that have stuck with me for years: 1) you can say “No” sometimes, and 2) describe to me your vision for Brooke at age 12, 18, or 21. The first statement related to her concerns about my exhaustion working two part time jobs so I could have the flexibility to be home during the day to take Brooke to four therapy and doctor appointments every week. This is a common occurrence for families of children with disabilities – one parent works while the other stays home part or full time to provide daily supports. The doctor said that there was no need for Brooke to have that many appointments every week and that it was OK to tell therapists and doctors we either needed a break for a week or two every couple months or we needed to scale back on the number of weekly appointments.
Her second comment about having a vision for Brooke really threw my husband and I for a loop. We couldn’t think past the next day or week; let alone 10 years or more down the road. Brooke was on oxygen full-time, needed 14 pills each day to control seizures, cortically blind; and unable to walk, talk or hold anything in her right hand. We were emotionally, physically, and financially tapped out. But her words lit a flame. And, prompted me to look deep into my core about my beliefs and my biases, and opened my eyes to possibilities. What was our vision for Brooke? What would her gifts and talents be? How did we want the world to interact with her? She made us think and question what we thought about Brooke and her role in our family. But more importantly, she listened. This doctor changed the trajectory of our family’s journey. We had a vision statement that we shared with therapists, health care professionals, child care workers, and her school team. We saw ourselves as partners with professionals and took time at every therapy, doctor and dentist appointment from that point forward getting to know the people in Brooke’s life (their dreams for Brooke, their goals, their biases). What a gift that developmental specialist gave to us – a gift I have passed on to other families I have supported through my work with Parent to Parent and Virginia’s Family to Family Health Information Center.
Communication, it turns out, is everything. In the span of two years the school staff, my husband, and I resuscitated what was a failing elementary school experience for my son. By changing our attitude and approach to communication with the school — and thanks to responsive staff who were willing to listen – things have fallen into place. The communication skills we developed in relation to the school have trickled into other areas. How we communicate with medical staff and our son’s therapists in speech, occupational therapy, and physical therapy is similar to what we found “works” in the school setting: infographics!
Kindergarten was a rough year. Phone calls, folder notes, and emails from school flooded in. They described outbursts, screaming, kicking of furniture, toilet accidents, and a few incidents of running away from the playground during recess. Our son came home biting his nails, sucking his hair, and refusing to talk about his time away from home. Fortunately, a psychoeducational evaluation uncovered hidden disabilities, empowered us with an IEP, and put us on the path to understanding our son.
Turning the psychoeducational report into effective strategies at school did not happen automatically, though.
Here’s what had to happen:
Adults kept record of what worked and didn’t work for the child, both at home and at school.
Adults from home and school learned to use the same language and lingo.
School staff had the opportunity to learn details of the child’s special needs outside of in-person meetings.
Different methods of communication between adults were explored.
After leaving many a school meeting feeling misunderstood and frustrated with myself and the school, I turned to infographics. By focusing and simplifying the description of my child’s uniqueness onto a printed page, I was able to share crucial information with the school before meetings. Instead of using the in-person meeting time to explain and re-explain my son’s challenges, the infographics explained them ahead of time. Time at the beginning of the meeting was used to answer focused questions on the diagnoses. The remainder of the meeting was spent discussing strategies we would try and how we would assess progress.
Creating infographics takes some computer savvy and a little time, but it doesn’t require any training in graphic design. I made ours using Piktochart, and the results have been astounding. I walked out of the last school meeting uplifted, optimistic, and understood. Second grade has been the best year yet! Although my son’s special needs will always exist and the school environment will always be challenging, many of the maladaptive behaviors we used to see have subsided. When a struggling child is understood, listened to, and supported, a thriving child emerges to share his gifts with the world. Learning how to communicate effectively has been key for our family.
I found out I was pregnant three months after my first son was born. It was a complete shock, and honestly I was terrified.
I had no idea what was to come.
Delivery day: My water breaks, but I’m not in labor so I’m taken for my second C-section. After a smooth delivery and surgery, I get to meet my second son, Corbin Walker Caruthers. My very first impression was he was really red, and he looked like a little old man. But I smiled; I was already imagining the joy he would have growing up with his older brother.
Later that day, they tell us they hear a heart murmur.
Shock doesn’t describe what we feel. We instantly turn to the internet to look up what exactly a heart murmur is and if we should be worried. Everyone tells us not to worry, it’s common and will most likely go away on its own.
But it won’t.
4 days later and one of the worst days of my life: we learn Corbin has life threatening heart defects that will require heart surgery. He needs to be rushed to Ruby Memorial to have heart surgery. He can’t go home with us.
I could go on to explain the heart surgeries, the intense feelings you go through when waiting through an 8 hour heart surgery on your newborn, the needles, the tests, the IV’s in your sweet baby’s head, the agony of hearing your son isn’t getting better…I could go on and on. But I will just say I pray; I pray every day of my life that another parent will never have to go through that pain. That complete AGONY. Those knee-buckling emotions of “I can’t do this”, “Why me God? Why my baby?”. It is a terrible thing to see your child that sick.
We prayed. And we believe in the power of prayer. Corbin got better! But then he got worse. Much worse. His third heart surgery was necessary but it almost killed him on the table. It took three hours, after his surgery was finished, to get him off the bypass machine. It was a very rocky three hours.
Corbin made it through surgery, but he would not live to go home again. Our baby died. May 17th, 2011, he was two days shy of being three months old. The PICU floor cried with us as the rain poured outside. The doctors gave us hugs as they wiped away their tears.
But his story isn’t over.
Three months after he passed, I met with two heart moms and together we teamed with The American Heart Association to introduce a bill. Corbin’s Bill. It would require every single newborn in the state of WV to be screened for heart defects. You would think this simple, cheap, and painless test would have been mandatory already, but it wasn’t.
Corbin’s Bill passed THREE MONTHS after we introduced it. The bill is now implemented state wide and every single newborn is being screened with pulse ox because of my son’s short but powerful life. He lives on through this bill.
I hate that something so tragic had to happen in order for something so wonderful to happen, but I am proud of what we have accomplished in Corbin’s name. There is also now a non-profit established in his honor, The Corbin Story Fund, which I and my family and friends are walking under in this year’s March of Dimes walk.