This is the second part of a guest blog post by my friend Connie Baum where she shares a very personal journey that her family has taken as a family with not one but two special needs sons. To read part one click here: http://www.growingupspecial.com/special-needs-finding-a-place-of-love-acceptance-part-1/
Guy’s health began to deteriorate, however. A surgery from which he did not recover well left him with memory issues, confusion, and lethargy. It was an exceedingly painful decision, but it needed to be made: Guy needed to be placed in a nursing facility for 24 hour care. At the time of his arrival, the staff estimated he might linger for six months. He was weak, thin, depressed, in great pain, and was very confused. He was 29 years young.
It was about this time in his life that his Services Coordinator, who had been a faithful partner in so many transitions in Guy’s life, transferred to a different office. He would be served by a new coordinator. I will always remember the young dark haired beauty who arrived, curls bouncing, carrying in the stack of folders pertinent to Guy’s case. We loved HER at first sight, too! She was a mighty advocate for as long as she worked with Guy.
Over a decade, Guy’s health had significantly improved. Because of what Mom had learned about water, supplements, sleep systems, energy medicine and a plethora of information he was able to participate in another workshop setting. It was with great joy that he became able to live in a Group Home. He would miss his friends at the Nursing Home but a Group Home would mean more opportunity for learning and a more upbeat existence.
Things with the agency sponsoring the group home began to unravel at the same time we parents needed to simplify our lives. We consulted our beloved services coordinators-past and present-for answers to our dilemma.
As we were debating our course of action we learned of a brand new agency with a fresh vision and hopeful philosophy. Could we trust this new agency? Would they let us down?
After a VERY rough start to the beginning of a chapter in life that put those step brothers back under the same roof, we have met the people who will be caring for both guys.
These people WANT our boys. They have a home that is laid out so as to accommodate them. They have children and relatives who will embrace them. They seem to be well qualified and well trained for the job they have accepted. This amazing couple, and their family, came to the agency at THE PERFECT TIME. I am persuaded it is a ‘God thing’!
Nothing in life is certain. But we are feeling mighty elated! We have no control over things like our kids’ lives, so we must TRUST that Divine Providence is at work.
Special needs have become special blessings on so many levels!
This morning we are marveling at the synchronicity of how our boys are enjoying a quality of life we dared to hope might be possible. If it is not synchronicity; if not a God thing, then, pray tell, what IS it?
If you would like to learn more about Connie you can check out her Health And Wealthy site
Are you on a “trip to Holland”?
The poem written by Emily Perl Kingsley was cut out and pasted on refrigerator from February of 1992 until we moved to a new home in 1995. It was titled, “ Welcome to Holland”. In essence, it was a snapshot of what it is like to being unprepared when you give birth to a child who has challenges, such as medical or cognitive disabilities.
There is one section of the poem that I read over and over again, “After 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.”
My husband and I wanted to go to Italy and ended up in Holland on February 7, 1992. I should have known that our trip to second time parenthood would be bumpy as we were told that our second born was to be a girl. “Two girls, so nice”, my OB-GYN told me. Guess what, we had the first boy born in 28 years in my family when he arrived via emergency c-section. Not breathing right. Sugar too low, heartbeat too high. I could already feel the “plane veer” off course.
Days later we were allowed to go home only to notice that our little “fella” was turning the color of a Sunkist orange. Not good. Not good at all. Rushed back to the hospital to be told it was simple “jaundice”. Nope, nothing in the child’s life would be simple, I found out. Days go on and before the first actual tulip bloomed that year we were in intensive care with our young guy. Jaundice ended up to be a “liver problem” – not yet determined, but possibly very serious and could lead to severe retardation. Respiratory syncytial virus/ RSV nearly claimed his life. Reflux choked him every third breath. Our nightmare continued. You know you have a very sick baby when you can’t find room in the isolated PICU suite because of the number of doctors, nurses and respiratory therapists working with your child to keep him alive. You also know your baby is very ill when the nurses come and ask you questions such as, ‘Is there anyone we can call for you?” Does God have a hotline, I wonder?
For any new parent who has a baby you know this is the worst part of the scenario- waiting. You wait to see if the tests are positive for illnesses that are unimaginable. You wait to see if the insurance will cover the rare and complicated blood work, machines that are helping your child stay alive or special therapy sessions ordered. You wait to see if you will ever have a “normal” life again for yourself, your family, your work, etc. Will your child walk, talk, eat normally, have friends, etc.? You begin truly begin to hate Holland.
Then, little by little, the wait can end. Test results come back. Therapies begin. Hospitalizations end and you go home. But, for many of us, this is when you start a new journey in to the realm of Special Education. Here is the most ironic part of this story and the reason I am writing it for this blog. I am a special educator. I am a full fledge, certified School Psychologist that is trained with helping parents and children with special needs. All my training flies out the window as my mind is trying to process the months of evaluations, reports and recommendations from specialists. Ironic indeed. I have now changed teams! Instead of being the intervention specialist I now am the one calling our local school district asking for help from the Early Intervention Team! And I am so grateful when they appear at my door. But, I still have problems with paperwork and understanding all the information. How can this be? I do this job everyday and I am still wading through it because my head is so full of grief and confusion. The team helps me. Everyday gets a little better. Clarity arrives with every meeting or visit from a team member. Family members come on board to help. We get it griethrough it.
Now fast- forward, our son improves with therapy as he starts to talk, walk (actually run) and become quite sociable. He has more hospital visits but he is deemed fairly healthy. His liver has a benign disorder and we are told that he shouldn’t go without food or enter in to the military. We can live with those two stipulations to have a benign liver disorder vs. the alternatives.
I also become a much better psychologist. Often I go to our refrigerator and I read Welcome to Holland. As I do, I imagine my own fears, but also the see the faces and hear the sad, confused and sometimes hopeful voices of countless parents and children I have worked with in the past. I am a better person because I stopped in Holland than Italy.
As for the little “fella”, he is applying to colleges now. He has had his challenges, but nothing we couldn’t handle without the help of school and healthcare professionals.
And guess where he suggested we go on summer vacation this year? Holland. Well, I’ll be!
Hello Readers: I would like to take this opportunity to thank Louise Sattler. Louise is an expert in working with children…as she said…she is a certified School Psychologist. She also heads up a great business known as Signing Families. She has a website that you can access here: http://www.signingfamilies.com. Louise is available to do workshops and she does speaking engagements as well. Teaching sign language helps build relationships and opens doors of communication for those with special needs. Louise and Signing Families has a wonderful DVD which teaches beginning sign language for babies, toddlers and pre-school age children; it has over 100 signs to use.
I can say that she is a very engaging woman who is open and willing to share her expertise and her experiences when it comes to educating and helping families succeed in opening doors of communication for their special loved ones. Thank you Louise for sharing your personal perspective of living successfully with challenges in parenting children with special needs!
Every family is made up of individuals with wants and needs. Every family is different. Add a person…take away a person; and, it changes the family dynamics. Add a need, or take away a need; and again…the whole composition of the family changes. This is to be expected in the life of every family.
Families that are created out of adoption have a multitude of blessings and challenges. The same can be said of families that have special needs children…whether they are born into the family or adopted. The term family falls under an umbrella of accomodations; each person’s wants and needs are accomodated into the family unit (or should be). Your place in the family is guaranteed out of love, acceptance, encouragement and the occasional nudging towards further personal growth. A healthy family is designed to be a personal support system.
My own family has both adopted children and special needs children. We have blessings and challenges like any other family. Those blessings and challenges aren’t JUST related to being a family created from adoption, or of special needs; it is sometimes a mixture of both.
I grew up in a large family and my husband did as well. We are used to understanding that each person is unique. Each person is an individual, as well as, part of a family unit. Often in my sibling group we had wants and needs that conflicted with one another…my husband’s family as well. We had to work out any differences between family member’s expectations. My husband’s family was impacted by some special needs, my family was not. Neither of our families were impacted by adoption. And yet, because we came from large families…some would consider our families to be special needs just because of the number of children. Each person in a family impacts another; that is typical of any family that consists of more than one person. There is no such thing as a “normal” family!
We are blessed with creative thinkers, business minded or logical thinkers, nurturers, artistic individuals, readers, non-readers, free thinkers, outgoing personalities, highly verbal personalities (how come i didn’t get any quiet personality childen?) LOL, musical, non-musical, conformists and non-conformists, high IQ-low IQ, flexible and non-flexible personalities; you get the idea. We are a creative mix of likes and dislikes. It is a balancing act at times trying to meet everyone’s needs. But, it is done because we want to; we desire to recognize each person’s requirements to be successful, to be healthy and happy.
Each family has a story; it has a beginning, a middle and an end. Everyday we are writing new pages to add to the story. Those stories are of interest to others because we can learn from one another. We can share in the laughter, the confusion, the joy, the sorrow, the sense of betrayal or anger that fills a family with a lifetime of experiences. The stories of your family can mingle with other family stories to create a sense of encouragement,failure, discouragement, success, education, or compassion. Experiences can draw people together or set them apart.
Isolation is sometimes a part of family life when you are raising adopted children or special needs children; just because of the lack of understanding; or, perceived lack of understanding, of those in your social circles or community. It is very important to find support in those times of feeling isolated by behavior difficulties or by circumstances.
We must learn to live in the moment…not be defined by labels or expectations. Each day, each moment is open to interpetation. We can stop, we can reread, we can change directions and we can grow and learn. Sometimes people get a label and try to skip all of the chapters in between the beginning and the end…they just want to go to the end of the book and see how the story turns out. It is in the daily living…getting the most out of each and every moment that we are given to live, that we find fulfillment and joy.
So, what’s your family’s story? How was your family created? Is your family life the way you expected it to be? If yes, why? If not why? What would you change if you could? Can you change it? Can you change how you think about it? What impact does your family have on each other; what impact does your family have on others around you? What does family mean to you? What do you love about your family?