As a member of the Baby Boom generation, by now most of my friends have experienced an empty nest. The kids have moved onto college, marriage or their first apartment. Change is afoot and the path of uncertainty begins. Empty nest for parents of special needs adult children like mine is a bit different. Although we share the void, the vacant bedroom and the resounding silence, our adult children have not moved on; for them it’s a changing of the guard. Their care-giving needs change hands. Their new home is a group home with housemates like themselves and caregivers who provide their daily needs 24/7; this is their new extended family. When our children turn 18 years old, parents like me are required by law to shift into the new role of legal guardian where we continue to manage our adult children’s support programs and affairs through nonprofit organizations and government agencies. Like most parents, our nest becomes empty and the inevitable reality of growing up moves our children forward into adulthood, but our responsibility as guardians’ remains for a lifetime. The nest is empty, but ours echoes back the deafening question “who will step into my shoes and watch over my child when I am gone?” Empty nest, for those with special needs children; it’s not just a transitional moment, it’s another leg of the journey into the uncertainty beyond our own lifetime. Note from the Author While shoveling a January snow earlier this year, I looked up and noticed a bird nest tucked into my rose bush. Frosted in a layer of snow, it sat perfectly formed in the middle of the twisted twigs of thorns; an empty nest from last spring. I grabbed my phone and captured the image. It was a perfect metaphor for how we try to raise our kids under our protective guard only to surrender to the inevitable hour glass of time. What once nurtured life is now empty; the baby birds have flown and a new dawn has begun.
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During Autism Awareness Month this past April I decided to create and post a meme each day about autism growing up on my Facebook Community Page, www.facebook.com/Autisminsights/. Each post had a picture of my son at different ages growing up along with a message about autism, a “Did you know?” question or fact to raise awareness of the alarming rate of growth of this diagnosis and need to plan for its aging population. When autism is mentioned to those unaware, their thoughts usually associate it with an early diagnosis, research, or a young child with autism, not the adult. Parents raising children with autism have a trail blaze of questions swimming through their brains as their children grow, like: How will my child be provided for? Who will take care of them as they grow into adulthood while still requiring assistance with simple daily living tasks like getting dressed, eating, brushing their teeth, and bathing? Who will provide 24/7 supervision to keep them safe? Who will continue caring for them when I, as a parent, no longer can? And the most heart wrenching question of all; Who will love my child when I am gone? These thoughts sear the minds of many parents. Like a brush fire that ignites from one match, they watch as the inevitable growth of their child unfolds before them. They face the diagnosis of autism every day, not just during Autism Awareness Month. Even the most astute parents/guardians who plan and meet every deadline, every requirement, are not guaranteed a secure placement for their adult child. It’s not like planning for college; the choices are limited and not always a choice, but surrender to dependence on agencies and what is available; a surrender of your vulnerable adult child into the hands of strangers that you have no choice but to trust will care for them. Reflecting back on all of the messages and pictures I posted in April, there’s one that always grabs my heart. It is the one of my newborn baby boy sleeping, wrapped in a blanket trimmed in blue; a pure image of bliss. The message, however, is quite unnerving “He was diagnosed with severe autism at age 3. He will need lifelong assistance. What will his future hold?” When this photo was taken his future was filled with unlimited possibilities. In a one word diagnosis, autism, he was pushed onto a path that could not be detoured. Together, we navigated the uncharted waters of growing up with autism. Autism Awareness, for those diagnosed and their families, it’s every day. I had been searching for an Adult Day Habilitation program that would support my son’s needs since August 2014. Day habilitation programs for disabled adults replace what had previously been the school day and upon the student’s 22nd birthday they are required by law to transition out of the school system into Adult Services. I recently located two potential programs and contacted both. Each had openings, an unexpected bonus. Most day habilitation programs are at capacity and have long waiting lists to get in. After sharing information about my son’s needs, the Executive Director was optimistic the program would be a good fit for him and to schedule a meeting to tour their facility; which I did without hesitation. A few weeks later accompanied by my friend Nicky, I met with the Executive Director and two other staff. A conversation about their program and my son’s needs ensued. The conversation quickly turned rigid and negative which left me confused. What were they talking about? Why was I here wasting my time if this was not an appropriate program for my son? Had I not provided enough information in the initial screening over the phone? After a lengthy discussion and my repeatedly asking “so you don’t think your program is a good fit for my son”, the response came back vague immediately followed by “I’m not saying no, I will have to speak with some of his residential staff.” I left feeling like I had just traveled two hours under false pretense, false hope. I got back in the car, my friend Nicky took the wheel; I was not up to driving. I felt defeated and deceived. Out of nowhere, a thought popped in my head to visit the other program I had located. I did not have an appointment, but we were in the area and it was worth a phone call. I tapped the number into my cell phone hoping to reach my contact there. She was out for the day, but was I told someone would get back to me. One of their staff called me back within minutes asking if I could schedule a time to tour their facility the following week. I explained to him that I had traveled two hours to get here and would it be possible to get a short ten minute tour while I was in the area. Without hesitation, he said “let me make a phone call and call you right back.” Again, within minutes the phone rang, it was him; he could meet us in an hour. That gave Nicky and I time to GPS their location and get some lunch. Upon entering the facility I could see it was spacious, clean and had a calm air about it. The layout was very similar to the residential school my son had attended for the past seven years and would certainly feel like ‘home’ to him. The energy of the facility was light and positive; you could see it beaming from the faces of the individuals who attended the program as well as the staff. All appeared friendly and happy. Since this was an impromptu visit, I knew it was real. We began our tour. The spacious accommodating space had rooms for puzzles, cooking, eating and a beautiful sensory room for quiet time complete with a cloud 9 bean bag chair, yoga music and soft lights. Our guide was clearly passionate about his work and committed to the cause of helping adults with disabilities. On this day I knew the long search had finally ended. My son is now placed and spending his days in this wonderful, creative, supportive setting. A place where he can be cared for in a safe, stimulating, creative environment that promotes life skills, social and personal growth. This is truly a gift. You see, in March 2015, my son turned 22 and was forced into a temporary day habilitation placement not of my choosing. To say it has been a challenging year is an understatement. This March, he turns 23 years old. A birthday that marks a rebirth; a major occasion that not only celebrates another year, but reaps the rewards of the persistence and fortitude of a mother’s love for her child to experience a quality of life with dignity and sense of belonging. Like any other mother, I love my child. No matter what they do or say or not say, you love them anyway. I heard an interview recently with Father Richard Rohr who described love; he said, “to fall in love you have to take the risk of changing yourself for this person…you have to let go.” We fall in love with our new born babies that radiate pure joy from their tiny frail bodies. We look toward their future with hope and endless possibilities. They cruise the furniture, stumble and fall as they learn to literally stand on their own two feet. The experiences before them will shape who they become and how they grow into adulthood. All we can do is guide them, let go and observe even though they may not always travel the path we had hoped. It can be especially painful to witness challenges that face your adult child. There are no quick fixes, no more boo-boo kisses to make it all better, you can no longer scoop them up and cradle them into your protective arms. You shift, sometimes cringe and change your perspective. You take a deep breath and let go. Come what may, you love them anyway. These are the biggest life lessons every parent experiences at one phase or another in their child’s growth. My child has autism. His communication is limited and he continues to require 24/7 care as he enters into adulthood. The journey so far has been a rollercoaster ride of challenges faced one at a time. Over the years there were many times I was read the doom and gloom list that began with “he will never …” followed by all of the things he would never be able to do. I fell in love with my baby, my boy, my young man, and so I take the risk to continually change perspective of what is possible for him. I let go of the fear of the naysayer guidance and open to the risk of thinking differently on a path of new possibilities of a future with hope. “The secret to life is enjoying the passage of time.” ~ James Taylor I had just returned home from a James Taylor concert held in Portland Maine. A friend had invited me to go on a one night excursion over the bridge to break away from the daily to-do list. It was a fabulous show. James’ voice was powerful and sounded better than ever. He tapped into memories of days gone by back in the 70’s and made new ones with a mixed bag ranging from “Sweet Baby James” to his new CD release “Before This World”. James had touched my heart with his music and when I arrived home I felt energized. This short jaunt was just what I needed to recharge my batteries. I hadn’t been away on an adult overnight for almost a dozen years and it was long overdue. My 22 year old son, Ian, was scheduled to arrive the following day for a home visit. Our visits are only a few days now, but satisfy the “mommy fix” we both need. One of his favorite things to do when he is here is to take car rides and listen to music. Since Ian was little, he always loved music. For the past several years James Taylor has been his favorite and has ongoing air time when riding around town. He does get stuck on certain CDs at times and insistent on listening to the same songs over and over and over again (repetitive behaviors like this are common among those with autism). I tried to trick him a couple of times by offering two different CDs to see if he would choose something at random; without exception he chose the troubadour with the initials JT. He clearly knows his choice. Living with autism changes everything. Your view of the world and how you and your child interact with it, your priorities change, and you define things differently. The universal language of music is a gentle but powerful force that seems to penetrate this isolating fortress called autism. Through the past twenty years, I have watched the effect of this unseen sound, as my son’s body simultaneously swayed and rocked to the beat wrapped in the rhythm that surrounds him, as a magical smile appears on his face. It is said music soothes the soul and may even have the ability to change the way our brain functions. It’s something that fills our ears, our heart, and our soul. It brings us together to share something beyond the sounds of the notes vibrating through the air. As I watch my son rock to the beat of the song, to the beat of his heart, I witness the magic of music reaching beyond the darkness of autism into the light of the joy he wears in a simple smile. “It is well to give when asked, but it is better to give unasked, through understanding.” — Kahlil Gibran A GIFT CARD fell out of the envelope. Through eyes blurred with tears I realized that there were two of them, both from my local market. Our Christmas of 2006 was like no other. My children and I were truly blessed with the spirit of giving. Only eleven months had passed since my life had crumbled around me, when my husband had announced that he was leaving our marriage, without explanation, without delay. He left me with two children to feed, bills to pay, no job and no child support. My son’s autism severely limited my job options. I was in shock. He had adopted my children as his very own, just eight months before he left us. What was he thinking? Had he gone mad? How would we survive? I scrambled to get food stamps and stood in line for government food. There was no room for pride. After two months, child support was finally enforced, but with that came attorney fees and more bills. I felt like I was drowning in legal documents and overdue statements. I was launched into full survival mode. I was frantic, constantly moving, thinking, doing, keeping all the dishes spinning in the air, afraid to stop, afraid one might fall and break, afraid that I might break. I couldn’t afford to even think about it. I just kept moving. Our divorce was final by summer. That autumn, I learned through legal documents that my ex-husband had remarried immediately after our divorce. He had moved on to a new wife, a new life, and he had left us in the dust. I was no longer in shock, but still digging out from the wreckage he had left behind, and Christmas was upon us. How was I going to conjure up a holiday for my children when we were barely making it through each day? My son’s therapist arrived for his usual session one afternoon and explained that his church chose a needy family to donate to each Christmas. He had been providing him occupational therapy for years, had not only become a good friend, but was lovingly considered extended family. He very kindly insisted “you are in need” and said he would ask them to select my family this year. He continued to explain that they not only provided gifts, but also a holiday turkey dinner, with all the trimmings. I was overwhelmed by the kindness of this heartfelt gesture as a feeling of gratitude surged through my body. Instantaneously, I struggled with pangs of guilt, the ultimate acknowledgement that we were, in fact, a truly needy family. If we were to receive this gift, would it declare that I had failed as a provider for my children? We could certainly use the food. I was always trying to get to the next step, through the next day, the next week. I thought of the children. Once more, there was no room for pride. So I accepted his offer with gratitude beyond my expressive abilities. He asked me what toys the children might like, what their sizes were and what they needed. I managed to get a tree that year, and buy a few small gifts for my children. The week before Christmas, the therapist called to say he wanted to drop off the gifts and the turkey dinner. When he arrived, the large box he carried was brimming with food, including a homemade pie ready to bake in the oven! He returned to his car to gather up the finely wrapped bags and boxes, all tied in ribbons and bows. It was all so humbling. I reached out to him with a grateful hug. After he left, my daughter and I stood amongst the bundles we had received. We were surrounded by an abundance of gifts, of food, of love. We were bathed in love for community, for humanity, for each other. That Christmas would not have been possible without the kindness of my son’s therapist and his church. The life lesson of giving, without conditions, would not have been experienced and witnessed by my daughter. This year, I look back at what I’ve been through, and I see where I stand today. I can now give the two gift cards from the market to the next special family who are selected by the church this holiday season. I hope they experience the love and compassion that I felt that Christmas when the gifts were given to me. I understand now that in giving, I have truly received, and for that I am forever grateful. Note From The Author This story speaks volumes of the kindness of someone who went beyond his relationship as a therapist and recognized a family in need, a family stranded in circumstance and limited by choices impacted by autism. He rallied community members, complete strangers, but all willing to give without condition to help another human being in need. These are the ones who lead by example. These are the ones who show us the true meaning of giving. This article was originally published in Cape Women online magazine holiday issue in 2008. http://www.capewomenonline.net/ “Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving.” ~ W. T. Purkiser Thanksgiving is a time of year to stop and reflect on what we are grateful for. Personally, I cannot begin to express my gratitude to all who have contributed their time, effort and compassion to the quality of life for my son and those like him who are diagnosed with autism. You who choose to help those who cannot help themselves are truly an exception to the rule. This world needs more of what you are made of, what you believe in, and what you stand for every day. On this Thanksgiving, I am grateful to those who give of themselves, bringing the experience of joy and meaning into the lives of others who might otherwise be isolated and alone. Note from the Author The photo above is of a knot in the supporting post of the side porch of my home. It is clearly in the shape of a heart. My home was built with energy of the hearts and hands of many Habitat for Humanity volunteers, another group of people who give of themselves through giving back to their communities. It’s a symbolic reminder that we need to take care of each other and celebrate our own abundance by investing it in the opportunity of helping another to thrive. "And the leaves that are green turn to brown, and they wither in the wind, and they crumble in your hand." ~ Simon and Garfunkel Autumn brings the brilliant color turning of the leaves and a cornucopia of harvest. It’s a time to slow down and prepare for longer, colder nights, as the daylight begins to shorten. It’s a metaphor for a time to reflect, go inward, to contemplate where you are in this existence here on planet earth. As part of the baby boom generation, I have no doubt entered this season of my life. Most people my age will look back on where they’ve been and what they’ve accomplished. They will reminisce with friends and family about memories they hold dear, a mixed bag review of triumphs and regrets; hopefully balanced by a mountain of gratitude. Thoughts of to whom they’ll bequeath their house, their dog, and cherished collection of LP’s and Beatle cards will fill their heads. Autumn, it’s a seasonal reminder that time is short. As a parent of an adult with autism, being in the autumn of my life only highlights the urgency to answer a question that has been lurking around my brain for years, “who will take care of my special needs son when I am gone?” As many times as I’ve asked myself this question, the answer comes back the same, like the echo of a voice shouting into an empty cave. No answer, just the hollow echo looping through my head. Joining the ranks of “empty nesters” is not part of the plan. Adult children like mine require ongoing guardianship that includes management of their personal, medical and legal affairs. Ritual rites of passage are eclipsed by questions about basic living needs. Answers are demanded of where will they live? who will care for them? and will they be safe? These decisions are not yours alone, but made jointly with public agencies. Decisions that will affect everything they do every day. Raising a child with autism leads you down a different path with challenges that remain beyond your lifespan. In the autumn of life, time is no longer on your side. You are placed in a position to surrender to what is and plan for an uncertain future. You must trust that the growing need to care for those aging with autism will be met. It requires a leap of faith and a belief your prayer will be answered in hope to bring peace of mind before the first snowflake falls. Note From The Author When I took the picture for this post, I could only see the vibrant color and contrast change of the leaves through my lens. A friend commented how beautiful the leaves appeared against the dark bark of the tree, followed by “you know that’s poison ivy, right?” No, I did not know. The poison ivy was wrapped in the beauty of autumn’s first colorful glow. I quickly realized it was perfect just the way it was. It is yet another metaphor for finding beauty in the imperfections of life. Its nature’s reminder that we are all unique in how we move through this world and no matter who you are the beauty of your own true colors will shine through. |