This Family Services blog was written by a woman inspired by her friend, the grandmother of a young boy with autism.
I sit watching Jeremy always so busy with his repetitive activities while my mind races with thoughts. Oh God, where is the place for an Autistic child in this world? I am at the end of my rope, I don’t know what else to do. I try to be positive and encouraging. I am always helping and seeking ways to make him better. I am so anxious I can’t sleep well at night for thinking about all our dreams for him that won’t come true, what he will not be able to do and ways to change these potential outcomes of his life. As I sadly ponder these thoughts, in my heart I hear these words:
The place for Jeremy is in your heart; it’s in mine. Each of my creations has a unique place in my world, a purpose to be found. Help him find his! Trust me, I will guide you. He was not sent to you to fulfill your worldly dreams. He has come to be a special part of your life.
He has a sweet spirit that lives inside of him, one that can be overshadowed by fear but nurtured by love. Learn to recognize it, see it, savor it and watch Jeremy become what I created him to be. You are loving him the way he was created to be loved, continue.
How can I even use trust and Autism in the same sentence? How can I acknowledge you, God, in Jeremy’s Autism for when I do I’m angry with you for letting it happen! What do I need to know? What good can I do here? If I am loving him they way he was created to be loved, then, Dear God, what can I do differently?
Then I remembered in my thoughts a Bible verse I heard a lot in church as I grew up. “Love is patient, love is kind…love always hopes, always trusts, always protects and always perseveres.” I hear words again in my heart:
To care for Jeremy, to make a safe place for him, and to provide what you can is one of the most life-giving, life-receiving things you can do. For this is love in action. Now, let my love nourish you as your love nourishes Jeremy.
After I hear these words I remember something else from the Bible…. “Be not anxious for anything but in prayer and thanksgiving make your requests known to God and the peace of God will guard your heart . . .”
While these thoughts are in my mind, I have been watching Jeremy line up his trucks. As if on cue, he looks up at me and gives me one of those rare, beautiful smiles. I think from my heart Thank You!
Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.
This guest post is by Nancy Miltenberger, Chair of the, 2011 Lehigh Valley Walk.
As any parent or grandparent knows, hearing that a child you love has autism is devastating. I have heard it twice. My twin grandsons, James and Thomas are both on the spectrum. A few years ago, James was also diagnosed with leukemia. Fortunately, when the oncologists told us about his disease, they also handed us a road-map for his cure. Three years and two months later (and many spinal taps, rounds of chemo, transfusions, and more) I am thrilled to report that James is cancer-free. If James had been diagnosed with the same type of leukemia 60 years ago, his story may not have had such a happy ending. In 1950, the cure rate for acute lymphoblastic leukemia was about 4% and in 2010 it is about 94%. What a difference!
As we all know, there is no cure for autism… yet. But the model for leukemia gives me hope. I am so thankful for James’s wonderful doctors and all the funding and research that went into pediatric cancers over the last few decades. Now, we need to turn our attention to finding a cure for autism. It affects far more people than pediatric cancer, diabetes and AIDS combined. I want to do my part to see a cure for my grandchildren and others like them. That is why I Walk and why I am the chair of the 2011 Lehigh Valley Walk Now for Autism Speaks. I recently heard Dr. Geri Dawson, the Chief Science Officer of Autism Speaks, and I now have some hope for finding help for my grandsons and our family. I feel that by supporting our local Walk I am helping to fund the research that is needed to help pull my grandsons and countless others like them from the isolation that is autism, and help them to lead normal lives.
This is a loving tribute by Jeanette Dakessian about her father. She is the mother of a 10-year-old son with autism, and her father was a huge part of her son’s life.
I have a 10 year old , mostly nonverbal, son who has autism. He was so attached to my dad, who he called grampy for many years, until my dad passed away last November from lung cancer.
My dad would come to my house three times a week to meet Tyler’s van at my house and bring him to daycare because I worked full time, and he was retired. He would get my daughter off the bus as well. Grampy gave Tyler cookies every day for snack and Tyler loved that! He was always very excited when grampy was waiting for him at the house. He would say “Gampy!!!!” anytime he saw a red truck, which is what my dad drove.
My dad would stop at my house multiple times a week to see the kids. Tyler would run into his bedroom to get his small photo album, come back out into the living room, and grab grampys arm pulling him over to the couch. Then he would take his arm and pull it over his shoulders so grampy was hugging him!
Then he would point at pictures of our family and look at Grampy, in the eyes, which he often has a difficult time doing, and say who ever or whatever was in the picture. For example…tree, ball, bus, Dee Dee(my sister) Di Di(my other sister), and so forth.
My dad would take his baseball hat and put it on backwards because Tyler would look at him and say, “uh oh!!” Then he would take it off my dad and put it back on the right way. It was their special thing, and oh so cute!
Tyler would not take anyone else’s hand and pull them to the couch. Only his Grampy. He loved him a lot and my dad loved him right back.
I brought Tyler to the wake last year and Tyler looked at him and said “night night!” He does not understand death and it was bittersweet. It has been a year since my father passed, and to this day, he still says ” Gampy,” when he sees a red truck. He will jump up and down and look so excited thinking “Gampy is back to see me.” It is sad to see that Tyler is disappointed when its not him, but he is so blessed to have had Gampy in his life.
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My beautiful six year old granddaughter has autism. It is painful to even think about it; to even consider that this lovely little girl is a “special needs” child. My heart aches to know that this is a condition she will have to deal with for the rest of her life. The worry weighs me down. How will this condition affect her life and her relationships? How will she live her life as an adult? How will she be able to work and support herself? As she goes through life, will she be able to handle the many thoughtless, insensitive people she will meet who do not understand her condition? She is so lovely; I hope her good looks will have a positive impact on her future. There are so many concerns! I sometimes wish I could “will” the autism away. If I could just close my eyes and concentrate hard enough, then it would evaporate. At times, I have even “bargained” with God. “Take it away from her and give it to me-or give me whatever you want. Just leave her alone!” no response. Actually, I am old enough to know that this is not how God works. Wouldn’t we all “bargain” away the problems and concerns of our loved ones if we could? I also ache for my son and his wife and their two other children. Sarah’s condition demands so much of each of them! The needs seem endless. There are MD visits, MD visits again, therapists, medication, a demand for endless patience, functioning on a lack of sleep, the need for additional financial resources and, then deep-seated compassion; all these issues which must be addressed on a regular basis create huge responsibilities.
Even as I occasionally wallow in self-pity, I realize that we are not the only people on the planet dealing with adversity. Why do I think I should be exempt? Why do I think I should coast through life while others deal with major adversarial issues? What am I thinking and saying with my “empty-headed words?” I cannot see the mind of God-as much as I try.
My concentration on the problem often obscures my vision of the many gifts present within it. I have seen my granddaughter, Megan, Sarah’s eleven year old sister, blossom as a caring and compassionate person. Megan fosters the art of communication with a little girl who has difficulty verbalizing and expressing herself. It really is a wonder to see this exchange of love. Megan possesses a wisdom beyond her years and a heart that has been honed by deep compassion and understanding. Little Tommy, Sarah’s four year old brother, is too young to understand the implications of Sarah’s occasional to frequent aberrant behavior, but he still loves her and is unsparingly generous with hugs, kisses, and sharing-at least most of the time! His extensive language skills also challenge Sarah’s attempts at verbalization and communication. When I hear Sarah say, “Grandma, I love you,” my heart melts. Those words take on new meaning when there is a serious language deficit. Words become more important and more meaningful in the midst of paucity; they are no longer taken for granted. Sean and Sharon are the epitome of selfless, caring, and compassionate parents. I am sure that Sarah’s condition has stretched them beyond where they ever thought they would have to go. No saints have ever worked as hard or loved as totally! Their unending selflessness has become a beacon of light in Sarah’s life. Would all this personal growth and development have happened without the presence of Sarah’s condition? Who knows? Why does one need adversity to grow as a person? But, upon reflection, it seems to me that the human heart needs outside forces (both good, bad, and in-between) to help it stretch and grow. Carl Jung once said, “Out of opposition comes new birth.” I know the full answers are within God’s purview and not within the limitations of my own mind-if only I could always remember that!
My husband and I, now in our retirement years, have always prayed that our retirement would be meaningful. We did not want to just fun and frolic in our golden years. We wanted a deep spirituality in this third phase of our lives. Our years are numbered; we are getting closer to the day when we will meet the Lord and we wanted to continue preparing for that meeting in a significant way. Little did we realize that in our retirement years we would be very involved with helping Sarah and her family! We did not anticipate the challenges, the work, the love, that would be involved in being present to them. We did not anticipate that our own personal and spiritual growth would be expanded and stretched. Ironically, nor did we anticipate the unbelievable joy that we would experience as we journeyed with them! As parents, we did not always fully enjoy our own children because we were young, inexperienced, and filled with anxiety about always doing the right thing. We mellowed as we aged and so, as grandparents, we were better able to appreciate and marvel at the growth of children. We have witnessed the incredible expansion of the human heart in the midst of Sarah’s condition. We have witnessed Sarah’s parents and siblings lovingly interact with her. We have also seen dedicated doctors, teachers, therapists, and counselors strive to break through the barriers so that Sarah will maximize her growth as a person and an individual. We have seen ourselves become more fully aware of the fact that limitations and disabilities are not always visible. There are many disabilities that are unseen, hidden deep within the human heart and mind-even within the body and the internalization of that fact has made us more compassionate people. We have come to learn that there are many gifts to be found in the midst of adversity.
There still remain more questions than answers but, ironically, one can only play the hand that has been dealt to you. This is the only life we have and so the challenge is to do the best we can and know that God journeys with us during the good days and the bad days as well as through our doubts and fears. There is still much uncertainty about Sarah’s condition. I do know, however, that the incredible amount of love surrounding Sarah will help her to grow as a person and to ultimately reach her full potential. And, when I am gone, I will still love her.