I Hate the Term 'Special Needs'

I hate the term "special needs." I mean, hate it. Can't stand it. I don't want my son to be labeled as such, and I refuse to be called a special needs parent.

That label is reserved for sick kids-- severely sick kids. My kid isn't sick. He's not. He's... not. Right?

That was me, from the minute my son was born, and we knew he was different. My husband could see his right arm, and his smaller, out-of-proportion-from-the-rest-of-his-body, sweet hand flailing about as the nurses cleaned him up after my c-section.

He whispered, "There's something wrong with his hand," and leaned his forehead against mine as I lay on the operating table, slipping in and out of consciousness from the extra dose of anti-anxiety meds I suspect the anesthesiologist pushed through my epidural just then.

Those few days in the hospital were a daze. It didn't feel like we had just welcomed a precious new addition to our family. It felt wrong, off... like a dark cloud hovered over us in the recovery room. The nurses could feel it; they could sense the shock we were still in.

Once we took him home, though, it seemed to get better. To have him occupy the spaces we had been anticipating seeing him in for so long-- in the swing, on the changing table, in his crib with the carefully selected bedding-- it changed our perspective, slightly. The shock still hung in the air, but it was wearing off. The hand would be dealt with, but in the meantime, he was still our precious newborn, and that giddy, new parent feeling began to emerge.

Twelve days after he was born, right as he was starting to get a routine down, we noticed how fast he was breathing... nearly three times that of a normal newborn. We rushed him to the ER, and from there he was flown to a children's hospital two hours away.

It was then that they began taking inventory of all the things wrong with our baby we didn't know he had.

• One non-functioning cystic kidney.


• Two heart murmurs, one of which was quite large and disturbing.


• His small hand.


• A large inguinal hernia.


• An immature 7th nerve, resulting in paralysis of his left eye and eyebrow.


• A partially-collapsing airway.


• Aspirating his foods, which required the installment of a G-button.

All of these anomalies together, according to the geneticist, gave him a diagnosis of VACTERL Association. It is not a chromosomal or genetic abnormality, rather just a name for an observation of body system malfunctions that are often seen together. At this time in the research, it's thought to be due to environmental factors, or lack of blood flow at a certain point of development. Thankfully, thankfully, it's not often associated with any mental deficits.

It was in the middle of discussing with a nurse about us needing a medical supply company for his g-button equipment that I realized... these are special needs. This is what a special needs conversation sounds like. This is his life, and our life, now.

Special needs is not derogatory. It doesn't mean he's defective, or wrong. It doesn't mean he'll be special needs forever... or maybe it does. It just means that right now, there are some things his body can't do on its own-- like, close his left eye, or swallow formula, and he needs extra help, from doctors, nurses, specialists, and his parents.

It's not about the label. It's about getting those extra things, whatever they may be, to help your child grow and thrive.

Jackson is a special needs baby. I embrace that now, and it doesn't scare me. And, my husband and I are special needs parents. New ones, nervous ones, but also determined.

However, above that label, Jackson is our baby; he's the final piece to our family. He, along with his sister, complete our lives.

Traveling Down Life's Road

Hello all, I am one of your older bloggers, I just might be your oldest blogger on this site. So, if wisdom comes through age, then I got that goin on!!

Over 25 years ago, my husband and I became foster parents and were blessed with the ability to adopt three of the 9 kids who walked through our door. All three are girls, they each have dark hair and brown eyes and their middle names each was Ann. They all have different special needs. As the days and weeks go by, I will tell you about each of them and the different journeys each has taken. For now, I thought that I would try to give you some idea of what the beginning of this journey was like. Won't you spend a little time traveling this road with me?

My husband, Bob and I married just about 30 years ago, September 22 is our anniversary. I had one incredibly wonderful daughter from my first marriage, who has issues with dyslexia. One day, shortly after we were married, I shared my desire for more children with my Bob. I truly wanted 5 kids running around the house, but due to my issues with insulin dependent diabetes, having more children was not in the cards. Although it was many years ago, my husband's mom was part of a family of 11 girls, 2 were foster sisters and one was an adopted sister, who grew up to be a "Sister", I mean a Mother Superior. The idea of fostering and adoption was therefore, not strange or uninviting to him.

We had our interview, filled out the paperwork and began the process of becoming certified Foster Parents. Part of the process was for us to take something called, the MAP training, this is a 12 hour, in class training on parenting, in all it's forms, discipline, nutrition, sibling rivalry, behavior and more. We took the classes very seriously looking back, I am so glad we did, those classes and the mandatory 4 hours of yearly recertification was an immense help in handling many of the issues that came up as we negotiated the twist and turns of the road we travel to this day.

In September of that year, I was at work as property manager for a condo in Long Island, NY. I was sitting in my office dealing with a very quiet afternoon, when the phone rang, it was the foster care agency. let's take a minute to set the scene...the policy of the agency was that you were told there was a placement and you had to tell them right then and there if you wanted that child so, true to the directions, I was told there was a two year old girl who needed a foster home, I said YES! immediately and was told she would be on her way within the hour. I hung up, sat there stunned and began to think...leaving in an hour...how long would that be before she would get to us...we needed diapers, bottles, a car seat, would she have clothes, toys, should I get baby food for her. I was reeling. Then my husband called just to check in, I thought he knew, I believed the agency had contacted him as well, so I began babbling, "we need to get a car seat, diapers, milk", I was shaking all over. My husband finally said, "what are you talking about?" I melted at that moment and in a soft voice said, "Oh you don't know!", I told him what was happening. I was just about a big blob by then, "I thought you knew" I said with almost no strength left in my voice. Now we were two puddles, two grown adults, on a phone just sighing. The moment passed and the plans began to take shape, I would come home and he would meet me there, a car seat, yes a car seat was most important, no, diapers, no bottles or sip cups or both!

We went together to the store, running into some women who were shopping and, with their help, as well as, a number of other people who were caught up in our enthusiasm and to feeling the joy, the shopping began. Soon they were all running through the store, even calling out loudly "Marcia, do you think she will need this toy or that brand of diapers!" by the time we reached the register, there were four or five women standing there, smiling and giggling, sharing a part of our awesome experience. It was one of the most beautiful moments in my life. We packed the car with our baby treasures, hugged the ladies and said good bye to and headed home, hoping that our sweet little Nicole wasn't waiting in the driveway!
NO SUCH LUCK!

The evening progressed, we couldn't eat or watch TV or even talk to each other, we sat, then we paced, then we sat some more. Finally the phone rang, it was the people who were bringing this child to us. They were lost, adding almost an hour onto the trip. Finally, at 10 PM I saw the exhaust of a black car in front of our home. I raced to the door, Bob telling me to go ahead as he held our very gentle dog from running out into the street. I made the journey from my front door to the curb just in time to see a lady reach into the back seat, she turned around and revealed this amazing cabbage patch doll for real! The lady said "go to your mommy" and in that second she was in my arms! She was soaking wet, held on to an empty bottle and just looked at me bewildered. Her name was Nicole, now Nikki and this was the beginning of the journey of raising 3 preciously awesome girls, with needs far more than I knew or understood at that time.

All 3 of my girls have disabilities: there are learning disabilities, mental challenges, combined with autism spectrum, cerebral palsy and a thing they once call RAD Reactive Attachment Disorder, an ongoing diagnosis that changes as a person gets older, but become somewhat more complicated, there is short term auditory memory delay child hood seizures and more.

I have spent the past 25 years dedicated to their needs and the needs of other people in our community. I have run support groups, sat on boards and councils, raised funds for people and charities and more. I have experienced much about places to go for services and places NOT to go. I have talked to families facing many issues: SMA, CP, Spina Bifida, Childhood Cancer, Group Homes for adults, and so much more. Hopefully in the coming blogs, there will be some tidbit of information that I have received from my experiences and those of others who have already touch our families lives. I hope that I can continue to be an advocate for my children and others needing the help so that they can experience joy that all of us, as parents and citizens of a deeply pasionate community of people want and need to find for our children. I would like to be blessed with the ability to relate stories, thoughts and information that provide encouragment and might get someone through a dark hour. I am here to share and to learn from you all. Thank you for reading how my journey began...See you again soon!