At age 2 ½ my son still wasn’t speaking, but the doctor assured me “boys are slow”. By age 3 he was diagnosed with autism. I was told he probably would never speak, never feed himself, never dress himself, a doom and gloom list a mile long. Autism was a strange word to me. I was in shock and disbelief at the same time. I quickly became a one-woman campaign in search of supports for my aging son. The challenges kept coming with each passing year. Entering adult services would prove to be my greatest challenge of all. Autism changed everything. “From her kitchen table to the halls of the White House, the author shows the power of one person to affect change... Truly a gem of wisdom that we can all appreciate in every walk of life." -Peggy H. “I could not put it down, a lot of it hit very, very close to home for me. Amazing and a must read for parents of children with Autism ...we are not alone.” – Heartfelt and Amazing Available now on Amazon click here: amzn.com/B07MFQ1JZY
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In March of 2015, my son turned twenty-two. His public-school career ended and he was thrusted forward into the special needs world of Adult Services. Another transition. Another adjustment. Whoever said, "the only constant is change" was so right. Just when my son finally was accustomed to is residential school where he was safe, supported, and happy, the winds of change forced him into another direction. As a special needs student, the law required him to exit the school system and abandon his supports at age twenty-two. Now what?
Fear of the unknown, of what lies ahead for him reared its ugly head once again. There are fewer supports in Adult Services and choices are limited. Most group homes and day programs are understaffed, with many workers under-trained and underpaid. Ian has a below 40 IQ, is nonverbal and will always require 24/7 care. As an aging single parent, I didn’t have a choice but to make a choice of placement for him. I had to trust that wherever he landed he would be taken care of. I've always had to make choices for him based on the knowledge and level of choice I had at the time. It never seemed to be enough. Most parents get to experience "empty nest" and fill it with celebration of their children's moving on into their adult lives and adding more branches to the family tree. They celebrate birthdays, graduations, proms, weddings, and grandchildren. Parents like me just want to know that their adult child will be safe, supported, and happy; and perhaps with a little luck surrounded by people who grow to love them just the way they are. 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 to 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. “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. Originally posted 10/6/15 Dear Friends,
I am in the midst of working on a writing project that requires my total focus and have decided to take a temporary hiatus from blogging. In place of my monthly blogs, I will be re-posting memes I created this past April for my Autisminsights Facebook page. The memes inlcude a message about autism combined with pictures of my son at different ages growing up (he is now 23 years old). Thank you for your viewing support; please share and help keep the conversation going. Johanne |