Special Needs

The first two years after Ainsley was born were very difficult. At the time I didn't really think of her as having "special needs", she just had a lot of medical issues that she might outgrow or overcome with time. In my world we call that "Medically Complex". As time passed my feelings about using the "Special Needs" label changed as my thinking changed. I came to know in my heart that people with disabilities and/or special needs are truly valuable like anyone else and so the term "special needs" no longer held a negative connotation to me. The term simply stated the fact: My child has unique needs that are....special. In fact I can now honestly say I am proud to be the parent of a special needs child because of the amazing person Ainsley is and all she has worked to overcome. In fact now days it's becoming common that people in the Disability Community prefer to use the terms "Disabled" or "Intellectually Disabled" and it is generally not used for adults. In time I believe the term "Special Needs" may become outdated in the same way as the dreaded R word. For now I continue to use "Special Needs" with regular people and more often "Physically and Intellectually Disabled" among people who are active in the Disability Community.

Sometimes when I proudly tell people that I am the parent of a special needs child I can see in their eyes that they are surprised by my pride.  It might seem unbelievable to some people because our society has historically devalued this group of people. People aren't used to other people being proud of having differences of any kind, and especially not that type of difference.

I'm touching on this topic for those parents who may be struggling with whether to use the term "special needs", because most of us parents struggle with this at some point in our journey. We want people to value our children but we've been taught that having special needs means a person is less and that is bad. Often we don't really know what "special needs" truly means. Here is a definition I found that I think is helpful:
What do we mean when we say "kids with special needs"? This means any kid who might need extra help because of a medical, emotional, or learning problem. These kids have special needs because they might need medicine, therapy, or extra help in school — stuff other kids don't typically need or only need once in a while.
Some people think that "special needs" means cognitively impaired. And it can mean that but doesn't necessarily. Understandably we don't want our children to be devalued so we might hold onto all the ways in which our child is different from "those children" and doesn't fit "that group" and be reluctant to consider ourselves to be a parent of a child with special needs.  We as parents have power to change the world by joining together and showing people that it's okay to have differences. It starts with us when we refuse to be ashamed and are in fact proud of our kids and also feel a sense of camaraderie with others who have differences.

I'm also touching on this subject for people who don't have a child with special needs so that they might reflect on their thoughts and feelings and perhaps start to see things another way. Any one of us could have something happen to us that would take away our ability to speak or walk. We would still be the same person. Changed but the same. Every life has value and it is my greatest hope that people everywhere begin to see that and it becomes the prevailing belief of our society. We are all more the same rather than we are different. Ainsley lives a good and happy life. We love her and can't imagine a life without her. That doesn't mean it is easy

This writing, A Trip to Holland, is well known by the community of parents of children with special needs. It gives other people some sense of what it feels like to have a child with special needs. All of the feelings that a person who was planning a lovely vacation that was hijacked from them would feel: anger, rage, a deep sense of unfairness, sadness, loss grief these are the feelings that parents process along their journey, even at the same time that they deeply love their child
A Trip To Holland.............................by Emily Perl Kingley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans…the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

The sooner a special needs parent accepts the fact that they will no longer be "traveling to Italy" the sooner their heart and mind will be free to enjoy and appreciate Holland. Saying that is easy. Doing it is a process.  Most of us get to a place where we are content "in Holland" despite being rerouted there against our every intention. But some of us will hold onto the unfairness and injustice of our situation, feeling that we and our children were shortchanged of the trip of our dreams, and may even struggle to understand how anyone could EVER be happy to be in Holland when they expected Italy. And yet in Holland we remain.

If you are the parent of child who isn't developing typically but aren't "there yet" you might want to read Amsterdam International. There is truth to Dana Nieder's analogy. I've been "in Holland" awhile now and sometimes I find myself strolling past "the airport" and see the unhappy faces of so many parents through the windows. I can see that these parents think they are trapped. They refuse to believe they were detoured on this one way flight to a destination they didn't choose. They adamantly refuse citizenship to Holland and would rather live in exile in the airport then step foot into Holland. We citizens of Holland welcome them with open arms just outside the airport doors.  Some of them even shout stubbornly "You may be stuck in Holland but we will get to Italy someday!". They cling to the belief that if they just stay at the airport long enough eventually they will catch a connector flight that after a few transfers will get them to the Italy of their dreams.

We all spend some time in denial, it is natural and part of the process. But, if you are still stuck I want to encourage you to leave that metaphorical airport. I say this because I remember what it was like living in the airport, always searching for some way to Italy. Holland is a lot better place to live than an airport so sometimes I just can't walk by without speaking up even when I suspect a parent isn't ready. It would be like walking past a person who has fallen on the street without offering to help them up. It really is a choice. Any parent can make the decision that it is time to walk out those doors and live where life has taken them. Right now.

Sadly some parents think this mental shift would mean they would be giving up on their child. It doesn't! When you know your child's life has value despite their abilities it does not mean you stop pushing them to be the best they can be! It does mean that if despite your best efforts they still struggle in areas that you will still be okay.  It doesn't mean it isn't hard or you don't sometimes wish it was easier for your child (and you). Acceptance is a gift to yourself and your child. It is becoming unstuck and and taking a step out of "the airport" doors. When one door closes another opens, and life in Holland is surely more enjoyable than remaining at the airport going nowhere. As you can probably tell, now days I am a patriotic citizen of Holland, not just a reluctant occupant, and I truly hope that all who find their way here will be too...one day.

It must also be said, I couldn't have made it this far in this journey without the support of my friends on the trach forum and other medical support groups. I've copied this here for them and all the other moms of children with special needs out there. We are sorority sisters.
To You, My Sisters.............................by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

In the beginning hospital social workers and other caring people would ask me if I had the support I needed. I really didn't know what that meant. Honestly, I would stare at them perplexed, struggling for an answer. My whole life I was always a rather independent person. I wasn't good at developing a support system but had been able to get by. Even those first few months while Ainsley was in the NICU, with a Kindergartener and a 3 year old I managed to get by. When Ainsley finally came home from the hospital on December 22, 2006 it rocked our world. Things that were once moderately difficult like, for example, grocery shopping with 2 young children, were now practically impossible given the amount of medical equipment I had to drag along. When I was pumping breast milk with 3 year old in the room, at the hospital, that was bad. But pumping at home while Ainsley needed suctioning and her alarms were sounding, that was a nightmare. There are so many ways that things were not easy. 

When Ainsley had a surgery it nearly put me over the edge. Sure I was "lucky" that I was already a stay-at-home mom at that point so I didn't have to quit my job. But the flip-side to that was the despair I felt over the fact I never got a break from the overwhelming amount of care Ainsley (and my other two children) needed. This was compounded by my husband's extremely demanding work schedule for several of those years. 

I would have never made it through those early years without the pediatric tracheostomy support group I was an active member of on the Internet.  They knew what I was going through as a caregiver. In addition they helped fill in the gaps in medical information, that only experienced parents know.  Having others that "get it" helped so much even if they were scattered all over the world. They told me it would be okay. I didn't always believe it, but they were right. Now I am sending the same message to the next group of parents. 

In the beginning I received a lot of help transporting my older children to and from school, something that was very difficult to do due to Ainsley's extreme medical issues early on. My sister Sheryl would come to my house and babysit my older kids when Ainsley had a surgery or doctor appointments. We couldn't have made it through without her support.

In August 2008 after getting onto a Medicaid waiver for children with intense medical needs (Ainsley qualified due to the trach and g-tube and the fact that she has no income) we were finally able to get a day nurse consistently to care for her (our private insurance would not cover this necessity at the time). Although we were approved to receive 10 hours a day of help, 7 days a week, we chose to get by with 2 days. For us that made all the difference in the world. I was able to take care of things that were difficult to do with Ainsley but it minimized the intrusion into our personal lives. The amount of nursing needed depends on many factors. When Ainsley got her trach out in 2014 we lost our nursing. (She still qualifies for a waiver due to her disabilities and special needs but not a nurse.) Thankfully we are now able to get by without that support. My point is support needs change over time

Support looks different for each person. What is helpful to one person is not to another. We all need some help. Parents of children with special needs need it more than you can imagine, especially if there are medical issues on top of that.  Offer your help. If you are a special needs parent in the early stages accept help and develop a support network even if it goes against your nature like it does mine. If it takes a village to raise a child it takes a small city to raise a child with special needs. We can't do it alone.