Hands Down Hannah

My name is Hannah and I will be 26 years old this week. I am a sister, a daughter, adopted, and I have Down Syndrome and Autism. I have no hearing in one ear and a mild loss in the other. I also have no vision in one eye and an undetermined loss in the other due to cataract removals followed by retinal detachments. I’ve had many eyes surgeries, but I get around well once I know the environment (except in the dark because I can’t see well in low light and become very frightened). 

I am nonverbal, but I make vocalizations, hum, smile, scream, laugh, cry, use some sign language, lead people to what I want, have used communication cards, and have a variety of ways to express my desires or needs.  Some of the signs I know are “more” (works for my love of food), “sorry” (Mom thought this was important due to my behavior at times…go figure!), “thank you”, “please” and a few others.

My family feels I am complex and often misunderstoodand and they have difficulty at times figuring out what I am trying to express.  

I love a routine. It can throw my entire day off by altering my routine, or not fully preparing me for change. This past year I have really come “out of my shell” and am willing to try new activities and go to new places. Some of the places and things that really used to bother me but I’m doing good with now include loud, sudden noises, the dogs barking, grocery stores, shopping malls, airplanes flying overhead, fluorescent lights (I see the flicker and hear the buzz that others don’t), crowds, or places like museums, restaurants, the zoo, and other locations where there are many people, noise and rapid change. I tolerate these things now, many times without much stress.   

I am NOT afraid of strangers and see them as an opportunity to get to do things I otherwise am unable. For example I love hands; I love my hands and other people’s hands. They call me “Hands Down Hannah.” My uncle used to say “So many hands, so little time” and it’s just so true! Hands are fascinating! But, my family has been teaching me to leave other people’s hands alone because they belong to them. I do not like this rule, so when I encounter a stranger the first thing I will do is take their hands, and see if I can get away with it. My mom feels this is dangerous.

I love, love, love music! I like to be in charge of the music which is why I always have my mp3 player with me (with built in speakers). I also like the karaoke machine and will make loud sounds into the microphone. I always wear a necklace because it gives me something to do with my hands and helps keep me out of trouble! I enjoy swimming, horseback riding, dancing and bouncing up and down (on the floor or the trampoline). I also love little dogs. We have 2 big dogs that I don’t pay much attention to, but when my sister comes over with her three little dogs I love them!

I LOVE to eat! My favorite “food” is Pringle’s potato chips (Mom doesn’t buy them because I sneak in the pantry and eat the whole can haha).

From my heart and hands to yours, Hannah 
(This is Hannah’s bio from our website http://mydaughtersvoice.com/ ). Feel free to visit our website and watch for upcoming changes.  More will be added soon in blogs here from Hannah. She joined our family through adoption at the age of eight and has endured much disruption throughout the years. Each person’s adoption story is different and very personal to them. Some share their stories freely while others keep them private. We will be sharing some of the bits and pieces we know that we feel may help others to understand adoption, especially as it pertains to special needs adoption.

Always in gratitude,

Pam

True Confessions

In my attempt to always stay positive I tend to sugar-coat things a bit. I also hide out or shelter myself and my family at times from the harshness and cruelty of the “real” world.  So, what about the “other stuff”—the bad stuff, the ugly stuff, the tough stuff, and the stuff I would rather not deal with— the stuff called reality? These are the things I have been choosing to ignore, to avoid, to talk around and not address.

Today, I am feeling a little bold though, and I’m seeing the shadow side as something that merely exists. We all have shadows, secrets, real-life junk that we don’t talk about or share. As part of my journey here, I am going to share some of this stuff. Raising children with developmental disabilities gets us attention (unsolicited and not always favorable). Many people have asked me through the years, “how do you do it?” or state “I could never do what you’re doing”. Bold individuals have voiced their opinion of our family, and place us in one of two categories: (1) saints or (2) crazy. I prefer neither. I’m a believer in the “law of attraction” or whatever the popular term of the day is that’s used to describe what people have been saying forever. Basically it boils down (in my opinion) to how one approaches life and each situation, how one feels and thinks, and who and what we draw into our lives; basically our choices, outlook and attitude. We can look at everything as positive or negative, happy or sad, or any other range of thoughts, feelings and emotions, good bad or indifferent.

I don’t actually avoid the real stuff; I just don’t share it. I can’t avoid it, because it exists, but the truth is I’d rather not deal with it sometimes (thus officially removing the title of Saint). I started to make a list of such things, and it got very long, very quickly. This partial list includes doing things for my children such as bathing, dressing and diapering, preparing food, feeding and cleaning up (each meal and snack) while at the same time teaching my children to do it for themselves, arranging schedules, setting up therapies (physical, occupational, speech, etc) and participating and carrying out the therapies in the absence of the therapist. Also included on this list are doctor appointments, choosing day programming, lifting Melissa who weighs about ten pounds less than me, and the lack of privacy in our lives due to some professional from some agency checking in on our progress (or the lack thereof).

Then there’s the tough stuff; such as dealing with the fact that some of my children have been abused or neglected and their perpetrators walk free. Forgiveness falls under this category. Also under this group are the scarier moments in life, those that very well could be life or death situations, such as seizures that come one after the other, surgeries, and various other emergency or medical conditions. There are things like not understanding what my children are trying to express, advocating and determining what is in their best interest. One of the tougher arenas we are moving into is becoming aging parents and still having adult children at home that need as much attention and care as infants or toddlers. We are watching friends our age enjoy their new found freedom, being able to explore their interests freely, as their children grow up and move on. They come and go as they please, take extended vacations, classes for fun, sleep in late on the weekends, take up a new hobby, read the newspaper, or go out to dinner or an event—perhaps even on the-spur-of-the-moment. Ah, yes, I recall vaguely that feeling of being spontaneous, and I smile. The serious side of this category is wondering what will become of our children when we are no longer alive or are unable to fulfill our role.

Some of the most challenging things fall into the category of dealing with our children’s behaviors. Here’s a news flash—there’s no manual for this, and what works for one individual may not work for another! I don’t like this category at all. First of all, it comes with judgment and advice, many times from well-meaning friends, family, acquaintances or strangers. Many times it comes in the form of “you’re a bad parent” or “if you had given your child more attention earlier in life they would be well behaved” or “that child just needs discipline”. Putting aside what others think of us though, the reality is that we have an opportunity to teach others about unconditional love, acceptance and the value of each and every human being. We also have an opportunity to help our children use their potential as best they can at home and in the community. I suspect this objective takes a lifetime to realize.

Ron and I made a decision many years ago to raise children with special needs, not fully realizing what we were jumping into. It would mean me giving up my career goals and living on one income as I would be a stay-at-home mom. It has been a journey that has been joyful, fulfilling, exciting, rewarding and uplifting, but also has been challenging, difficult, frustrating and lonely. I’m beyond thinking daily of the things I don’t like, these things I’ve mentioned, and more, are here as part of my true confessions. Some days the realities, the shadows, the dark side peek their ugly head through and I have no choice but to confront them. But, I’ve built a tool box throughout the years, filled it with tools that I have found useful for a variety of situations and I pull out one or more of those tools and do some adjusting when necessary. I long ago decided each day brings a new opportunity to learn, teach, reflect and readjust. The best decision I’ve made is to surround myself with positive people, those that inspire me to want to be the best person I can be.  More recently I’ve added one more important tool to my toolbox; self-care. I’ve discovered if I care for myself, take time to nurture me, renew and refresh by involving myself in things that are relaxing, challenging, rewarding and meaningful, I am much more able to face any challenges that may present themselves. It helps me deal with the bad, ugly, and tough stuff and the things I would rather not deal with; the stuff referred to as reality.

 With truth and love, Pam

Not Just a Sunflower

I love flowers, especially sunflowers. I grew the giant variety when I lived in Illinois where the dark, rich soil combined with the rain, sun and climate made for a gorgeous garden with the tall giants towering over the other colorful array of flowers that lie beneath them. I could walk through that garden and get lost as the plants were about twelve feet tall and the flower itself was perhaps twelve inches or more in diameter. They were marvelous flowers I grew from seeds. I enjoyed planting, watering and nurturing them, and watching them pop their tiny bodies out of the ground as they made their way from seed to mature plant. Even as they reached adult age and the flower beamed with pride and beauty it still held its value. People would stop as they drove past my home just to smile in appreciation of that happy flower, nod and wave with approval. Gravity would eventually take its toll on the giant and it would no longer be able to stand up straight but slightly bent and leaning down toward the ground, still worthy nonetheless. For as the season moved from summer to autumn the flowers now bent from the force of gravity would produce hundreds of perfect seeds and the circle of life would continue into the next year. Some would be eaten and appreciated for their great flavor, and some would go on to be replanted next season. Oh, the magnificence and triumph of the giant sunflower!

I began growing sunflowers again this year in my southwestern desert location with its hard packed soil, blazing hot sun and dry air. I wondered how this plant would take to this environment, and knew I would have to be an active part of its growth if it were to really thrive. I chose what I believed to be the perfect location for the plants, sunny but mostly early day sun, conveniently located where I could water frequently, and in the front yard so they could share their beauty and magnificence with every passerby. It took much effort on my part in comparison to the natural growing environment of the Midwest. With the right surroundings and all the care and attention I showed those sunflowers they began to grow and get strong enough that I could let them take off on their own with a little less attention. They were thriving. One day a group of preschoolers were on a walk through the neighborhood with their teachers and stopped in front of the house to admire, chat and giggle about them. I watched from my window beaming with pride. But, the sun grew hotter as summer progressed and it became more challenging to get those beautiful flowers to keep their heads held upward. Soon the giant flower would grow too big for its under-developed stem, and gravity would take its toll on them. My once happy flowers didn’t look happy at all. I started to neglect them, only watering occasionally and feeling they were not going to survive this environment. They drooped more each day and no seeds developed. Slowly I would start cutting them down so their appearance was not offensive to the neighbors. In a short period of time I decided it was time to give up completely, and sadly pulled each one out of the ground feeling as though they just couldn’t adapt.

On a recent night tour of the Desert Botanical Gardens in Phoenix we were handed a packet of seeds as we were leaving. I stopped in my tracks as I noticed they were the giant variety of sunflowers. I looked, stunned, at the woman who handed me that packet. “I love sunflowers! Do these grow in the desert?” I asked. I’m not sure if it was the sheer delight of the three-year-old that came out in my expression and voice or that it was a slow night with not many visitors, but she handed me 4 more packets and said “yes they thrive here”. Well, then I must try again! Armed with seed packets in hand, a new found motivation and desire within, a little research, and a closer observation on my part I went on to try to grow these beautiful flowers again. I chose a new location, a rich fertilized soil, raised beds, lots of water and nurturing and watched my flowers grow with pride. I stayed with them this time, watched and waited patiently. They were thriving! As I sit here today, following an evening of rain, I look out in my yard on their strong, thick stems and newly forming flower, and I know they are just days away from unleashing their inner beauty to the outside world. The flowers and I will both be very proud in a few days.

The only difference this time was that I sought help, in the form of encouragement (from the woman at the botanical gardens), with planting (my husband), feeding and watering (my husband, son and daughter when I wasn’t available), with information, resources and advice from material I read and people that knew more than me. This time compared to the previous I am able see their strength where I saw weakness, their success where I saw failure, their growth where I saw stagnation and their continuation of life as I will undoubtedly harvest their seeds to reuse next season. For myself I saw a willingness to try again and accept that what was seen as failure may be simply a learning experience. I was willing to take a new and different approach, to solicit help. I refused to see the failure and I didn’t give up,

The sunflower and my family have much in common. When my children were young I saw their strengths, I encouraged them, I advocated for their rights, I nurtured, I accepted and I saw their value and wanted everyone else to see it also. They thrived; they grew, got stronger and more able to do for themselves what I used to do for them. Their inner beauty was beaming for the entire world to see. As we moved to a new location and lost our support system, and found a new system very different from the previous, with different processes and terminology, I began to feel defeated, content with status quo, and let things become stagnant and inactive.

As my girls became adults their achievements slowed and I was tired of fighting the system only to be rejected. Happiness eluded us and I began to see our failures, our unwillingness to try new approaches, and stagnation rather than growth. Recently I grew tired of feeling defeated and having to accept the unacceptable for my girls. As we began to move through the seasons of life, I realized I needed a new approach. I opened up my heart, asked for help from an already existent team, lost some team members and gained new ones. With willingness, continued effort and unending support from a variety or people and sources we are able to see what may have appeared before as failures were simply learning experiences. With patience, love and nurturing we see strength and growth, with the willingness to solicit help and form a team or support network it is easy to see what a difference asking and being willing to receive help can make. My adult children are once again thriving, changing, adapting, growing and continuously evolving, and I see their brilliance and worth. Oh, the magnificence, value and triumph of my beautiful family!

In gratitude,

Pam

Goals and Objectives

Building my website and starting a blog site was quite an undertaking for me. Deep down I knew I could do it if someone just took my hand and gently led me down the right path. I offer my gratitude to Richard Sink for being that person, guiding me, believing in me, and putting up with the hours it took me to just find the right heading that was some shade of purple. Yes, it had to be purple, which had to take an incredible amount of patience on Richard’s part and I truly appreciate his sense of humor throughout.

I was feeling quite proud of my accomplishment, as I expressed what I’d wanted to say about myself and my girls and all was finally complete. Hitting the “publish” key I felt a great sense of pride. The next day I sat back to enjoy my achievement and I was struck by the question of “now what?” Questions began popping into my head and I was hit with one of those aha moments that bring awareness, but not in the soft, warm, fuzzy, sort of way. This was more one of those “what am I trying to do or say?” and “who do I think I am that people would be interested in whatever undetermined message I have?” sort of ways. I questioned how I would define myself and my goal. What was my goal anyway?

I began reading blogs by people who inspire me, and found their writing to be beautiful, the thoughts so well defined, the words carefully chosen, the messages encouraging and uplifting. I was stuck in a place of doubt. I finally sat down to write last night about a quote I had heard earlier in the day, but my phone rang. That call would take me away from my keyboard for more than an hour. Then there were shooting stars to watch, and the evening cleanup routine, and by this time my well thought out, and researched subject, was not coming together. I decided I had been taken away from the keyboard because I had not yet determined my goal, and I should not be writing yet. I needed to define my goal.

Things seem to be changing very quickly around here lately. My personal healing journey has taken a new turn as I work on forgiveness, school begins for Zach on Monday and we’ve got to completely prepare for that almost always stressful event. We are also trying to purchase a new home, and just switched banks and realtors. Melissa has had two devastating events this past month that very well could have taken her life, and took my thoughts to places I’d rather not go. Very good things are happening as well. I’ve got two children that are making rapid progress, Hannah and Zachary. Rapid progress is not an issue our family often faces. Progress in our home, with our children, does not happen quickly. We’ve learned to appreciate the tiniest of things, the small incremental steps that individuals make over a very long period of time. Both kids are becoming more able to handle social situations and group settings that were unbearable previously. Both are making huge strides in communication. Hannah has been gesturing more and is trying to tell me something each morning with the same “sign” she has invented. I do not yet know what she is communicating to me, which is a bit of a frustration for both of us. Zach has put together unbelievably compassionate, kind and complex thoughts and been able to beautifully articulate them. (Zach is not mentioned on our website but he is 15 years old, and has a diagnosis of autism. His struggles are greatest in the areas of communication and socialization).

Ron (my husband), Zach and I were having a discussion about “value” last night, and what makes someone a valuable member of society. We got quite involved in this conversation and each of us had our thoughts on the subject, trying to decide if value and gifts were tied together. I don’t want to quote Zach because I’ll destroy what he so delightfully said, but he went on to tell us what made me valuable, his dad valuable and what made his homeroom teacher valuable. I, of course was moved to tell him what made him valuable as well. Ron and I fought back tears as we realized what went into the thoughts and forming the sentences he had just expressed so brilliantly.

I woke up this morning grateful I had not approached the topic I was on a mission to explore last night.  It is today that I can clearly see my goal. I define a goal as an end result, where one wants to be when an objective is complete. So, my goal is not a goal at all; it’s more about our journey. Our family does not have a goal; perhaps we don’t even have an objective. We are on a journey, together, and I’ve decided my mission is simply about that journey. The journey doesn’t end, it continues on. So, with all the rapid change taking place in our family, bear with me as I get off subject and leap from topic to topic. Just sit back and enjoy the ramblings of a mom who always seems to come to some fork in the road, with a deer in the headlights look on my face, questioning which way to wander.

With love and gratitude to all that have read this far,

Pam

How It All Began

The decision to adopt was an easy one.   The process of adoption was much more difficult.  The bureaucracy, the agencies, the paperwork, the discussions, the classes, the prying into our personal lives, proved to be exhausting.  The final payoff though, was worth every agonizing moment. 

Our Social Worker quietly whispered to my husband and I that she would like to see us in her office after the group concluded.  “Could there be a problem,” I wondered?  “Did we get a negative reference?  Was there more paperwork?”  It was too early in the process for her to have a child identified for us. 

The class seemed to go on forever and the anticipation was growing stronger.  Finally 9:00 rolled around; we helped her straighten up the room and said good-bye to our fellow classmates.  We met in her office where she pulled out a note, which was tucked under other paperwork on her desk.  “There is this little girl I was wondering if you would be interested in meeting.  She is seven-and-a-half years old, and the victim of horrific abuse, which has left her to function as an infant.  She cannot walk or talk, has a seizure disorder, a shunt, and has had a portion of her brain removed which has left her with right hemiplegia, a form of cerebral palsy.  She is not potty trained.  Did I mention she is also blind?”  She handed us Melissa’s picture.  I wouldn’t say it was love at first sight, but it didn’t take long. 

Meeting Melissa changed my life forever.  It was also the beginning of a life I never could have imagined.  I never realized there was a world out there that was so different from that which I was familiar.  It was the real world of the disabled, and it was challenging and rewarding all at the same time.

I am 52 years old, married, and the mother of five children.  Two of those children were born to us, and are older than Melissa.  The other three are adopted and have special needs.  I have learned more from them than I could have imagined.  I learned what it means not to judge others, and I learned what it means to constantly be judged.  I learned empathy and compassion, and to advocate from the bottom of my heart.  I was introduced to physical, occupational, speech, music, feeding, equine, aquatic, and vision therapy.  Acronyms such EIP, IEP, and ISP became part of our regular vocabulary.  There were bath lifts, car lifts, hoyer lifts, various other lifts, and LIFTING!  Overpriced equipment was necessary just to make life comfortable.  Doctor’s appointments, specialists, surgeries, and rehabilitation were part of this strange new world.  I learned to find resources, to find strength in other people, and to listen and support them in return.  I became familiar with the ADA (the American with Disabilities Act) and challenged it on a couple of occasions (you win some, you lose others).

I headed a support group for parents with disabled children, and attended groups for those with special needs children that were adopted.   I learned “the system” as it relates to schools, doctors, services, and making one’s way through the red tape of the bureaucracy.  I joined an advocacy group and became a parent advocate.  Many parents would call me for assistance or a shoulder on which to lean.  I became a strong advocate in the area of the adoption process, special education, the disability community and the ability to locate resources and referrals.  I enjoy helping other people learn to help themselves. 

I later went to school to become a massage therapist, which is what later guided me to study Social Work. I was profoundly moved one day in the massage clinic in the early stages of my internship.  “Touch seems to be as essential as sunlight. In the absence of touching and being touched, people of all ages can sicken and grow touch starved.”  (Diane Ackerman, A Natural History of The Senses).   I began to open up to the concept of touch and truly benefited from touching others and being touched.  It was through meeting various people, listening to their stories, and truly touching them on so many levels that I realized the ability one person has to change another’s focus. 

The most significant experience I had in the student clinic occurred my first day.  My last client of the day was an elderly woman who had Alzheimer’s.  None of the other therapists wanted to “touch” this woman.  I have to admit I was a little concerned but welcomed the challenge.  It was “girl’s day out” and her daughter and daughter-in-laws did not leave her at home but brought her with to experience a massage.  That massage meant as much to me as it did to her and her family.  Although I answered the same question repeatedly for an entire hour (probably about forty times) I enjoyed her company and knew that even though she would not remember the massage, her body would, and I knew her family was a very important part of her life.  I was touched by their thoughtfulness not to escape her for a couple of hours but rather to include her. 

My family has been the main focus of my life and I have not worked full-time in either Social Work or Massage, but I am grateful for the experiences I had during my schooling and my internships. I am hoping to share with you the life lessons I have learned from being a stay-at-home mom for 28 years to children with multiple needs.  This did not at all mean staying at home and doing nothing (I don’t think that title exists), but rather being very active in the community, schools and various agencies. Some of my greatest lessons have come in the last few years as I have been on a healing journey learning the importance of the mind, body, spirit connection as well as taking time for self care and nurturing. 

Thanks for taking the time to read this far and I look forward to introducing you to my daughters, Hannah and Melissa soon! I am hoping to cover many topics in the future, including adoption, special needs, aging parents raising children with special needs, and welcome your questions and comments.

Many Blessings, Pam

Hello world!

Check out our website at http://mydaughtersvoice.com/