Daniel is special to us in so many ways. We waited years to adopt just the right baby for us, and since we chose to go with an open adoption, that meant that our baby’s birth parents picked us from a large group of equally deserving families waiting for babies. We were chosen several times before Daniel’s birth mother chose us, but each time, things didn’t work out and the birth mother decided to keep her child. This time was different, and we bonded with both Daniel’s birth mother, and Daniel himself, before he was even born. I just felt in my heart that he was meant to be our child. That feeling has never gone away, and I’m sure it never will.
Daniel was born in January, 1992, a day that will always be one of my most precious memories. We took him home right away and held him and talked to him pretty much non stop for the first few days, because he didn’t seem to sleep except when I rocked him. Daniel was (and still is) one of the most attractive and beautiful children that I have ever seen. Words can’t describe how much I loved him, and how much I loved his birth mother for choosing us to be his parents. When you adopt a child, I believe that you not only owe the same things you owe to your biological children, but you also owe something extra to their birth parents who had the courage to trust you to be a parent to their precious child. I believe you owe it to them to put forth the maximum effort to insure that their child grows up to their full potential. When you adopt a child, the only way to repay the parents who gave him/her to you is to do everything in your power to guide, nourish, support, and parent your child. There is a trust and a promise given, and it’s a lifelong commitment.
Then, tragedy struck our lives, when Daniel was only 3 days old. His birth mother took him back from us. We never expected to see or hear about him again. I have never lost a child to death, but this was about as close as I can imagine we could come. Our baby was gone for good, and we grieved terribly for him. Eventually, we decided to adopt another child, and started the whole selection process over. This new child would never replace Daniel in our hearts, but he or she would be our beloved second child.
I believe everyone is due one big miracle in their lives. We got ours. Daniel’s birth mother unexpectedly returned him to us on his 5th month birthday. We thought we had our miracle when Daniel was born, but this was an even greater miracle. I still don’t know why Daniel was taken from us in the beginning, or why he was returned to us, but the reason is not as important as the love and concern his birth mother must have had in her heart for him, to give him up not once, but twice (especially since he was so adorable and perfect). Even when Daniel was away from us, I always felt that he was meant to be our child. Now, he is. We have claimed him both legally and emotionally, and he is indeed the perfect child for us.
Perfection, however, has a few rough and unexpected edges. Daniel appeared to be the perfect child in every way. He was adorable, talked (especially repeating everything he heard), walked early (actually ran) and had a lovable magnetism that drew everyone’s attention. He was had such rosy cheeks and and was such an alert baby, that when seen next to other babies his age, they appeared to be ill or dull. He seemed to see everything, hear everything, and notice everything at once. He had (and still has) an amazing vocabulary, although it was obvious that he didn’t understand what he said. He just thoroughly enjoyed talking. Of course, as previous foster parents, adoptive parents, and just being new parents, we had taken countless classes and read countless books on raising babies. All seemed to stress the same thing. All children are different, and mature at slightly different times in different areas. There are easy and hard babies, but these things are normal. So, between all of this advice, and our fear that Daniel might be taken away from us again (unfounded, but understandable given our experience), we adapted to Daniel’s more "strange" baby behaviors, and neglected to mention them to anyone until well after the adoption was final. We see now, that this was a mistake on our part, but at the time it seemed unwise to mention things that troubled us when they were supposed to be normal things that all babies did.
As a very young baby Daniel didn’t sleep. Well, he must have slept sometime, because he would be quiet for periods of time in his crib, but we never saw him sleep (except when being rocked) until we gave him Clonidine at age 2 and a half. Daniel’s motor only seemed to have one speed, and that was "turbo". You could never sneak up on him, because his hearing was so acute. As a baby, Daniel was a "peeler". Anything that could be peeled, was peeled, including paint off the walls,and diapers off of himself. He was also enchanted by overhead lights and fans, and could stare at them for hours. At nine months old, Daniel discovered the "joys" of feces smearing. He was obsessed with it, ate it, played in it, and finger painted with it. We were told that this is a normal stage babies go through. Daniel’s "stage" lasted almost 6 years. Physically, Daniel appeared normal, but he had low muscle tone. There were things that he excelled at, while there were other things that he couldn’t do at all. He could throw a toy (as a small baby) from across the room and hit you right between the eyes with deadly accuracy, but at age 3 he still couldn’t catch a ball dropped two inches into his waiting arms. He either couldn’t or wouldn’t touch a pencil or crayon, or try to draw pictures, yet he could hoard staples from catalogues and put them in every electrical outlet in the house, after removing and replacing the protective covers so we wouldn’t know he had done it. Daniel ran at an early age (10 months) but when he slowed to a walk he toe walked (requiring special shoes). He can climb like a monkey, but will still trip over nothing when just walking, and he can’t swing by himself in a swing. From early babyhood, Daniel would have unprovoked and uncontrollable rages. He was lovable and loved to be hugged and rocked, but only on his terms. Changes were not good, and we rapidly learned to introduce changes very slowly. It takes us two months to both put up and take down Christmas decorations, because it gives Daniel time to get used to the changes slowly. Overall, though, Daniel was a happy baby and toddler, and he smiled a lot, so we just kept telling ourselves that this was normal and he would grow out of it.
There comes a point when you just have to admit that "wishful thinking" and denial don’t make things go away. Daniel was steadily showing more and more sophisticated behavioral "oddities", and we finally admitted, at least to ourselves, that something could be very different about Daniel. My husband and I were cleaning up another smearing mess one evening, and watching Daniel blissfully dismantle his toy cars, talking up a storm the whole time about "You’re not fully clean until you’re Zestfully clean", a commercial that he had been repeating for hours. Being totally ignorant and uninformed, and thinking that autism was something that people had who sat in corners, never spoke, and waved their fingers in front of their faces, my husband remarked, "We have to face it. There is something wrong with Daniel. I don’t know what it is, but at least he’s not autistic!"
So, we hauled him back to his doctor who had been repeatedly telling us that his behavior was normal, and after he turned the light switch on and off the whole time we were talking, suggested that he may have ADHD. She sent us to a psychiatrist, who treated him for some time with a whole pharmacy of drugs, most of which either didn’t work, made him worse, or at best, covered a few symptoms for a few weeks. We never did get a firm diagnosis from that doctor, but he scared us silly by telling us that Daniel had "possible" childhood schizophrenia, "possible" ADHD, "possible" Tourettes Syndrome, "possible" Bipolar Disorder, "possible" Oppositional Defiant Disorder", "possible" Obsessive/Compulsive Disorder. and maybe some other disorders as well,and would probably end up killing us when he got older. He didn’t want to give a firm diagnosis because Daniel was only 3 years old. Daniel’s behaviors became increasingly more rigid and violent. We had enrolled him in a private preschool where they said he was doing fine with other children, but we had him videotaped there and he didn’t participate with the other children at all except to push them out of his way or hit them. Daniel was engaging in even more destruction of property (not out of anger, but because he has a need to take things apart). He had no peer friends, but the parents of the other children loved him because he insisted on hugging and "nose kissing" them when they came to pick up their children and they thought that was adorable. Rubbing noses, or "nose kissing" as Daniel calls it, is one of his rituals and his way of showing affection.
About this time, someone at a party where we took Daniel kindly lent me a book about autism, and said that Daniel reminded her a lot of some of the kids in the book. Denial struck again, and I refused to read it. The "A" word was just too frightening to contemplate at the time, and Daniel was a very smart kid with a huge vocabulary, which just didn’t fit into my preconceived notions. I was feeling like we had the only kid in the whole world like Daniel, when I decided to get on the Internet and see if there was another child like him, anywhere in the world. Just one. Eureka! I searched his symptoms (and things I didn’t even know were symptoms), and repeatedly came up with both autism and Asperger Syndrome, and occasionally the other alphabet disorders that his psychiatrist tossed out at us during our visits. I read everything I could find, and became convinced that he must have something on the autistic spectrum, possibly Asperger Sundrome, since he seemed to be so bright in some areas and had early language talents. Of course, when I brought this up to the doctor, he said that while Daniel wasn’t very smart (he obviously hadn’t been paying attention), people with autism can’t speak, are mentally retarded, and stare at their fingers. I immediately requested an evaluation, by a different doctor.
The new doctor tested Daniel, found his IQ to be 109 (before Daniel suddenly ended the test and refused to answer any more questions), and agreed that he had a lot of autistic traits and that a form of autism may indeed be the diagnosis. Then, upon discovering that Daniel is adopted, he changed his diagnosis to "Fetal Alcohol Syndrome", because he said that, "all birth mothers use drugs or alcohol or they wouldn’t give their kids up for adoption". Daniel has none of the physical characteristics of this syndrome, and I was appalled that the diagnosis would be different just because Daniel is adopted. We met Daniel’s birth mother, and she was under heavy supervision during her pregnancy. We have no evidence that she used any drugs or alcohol. We know why she decided to give Daniel up for adoption, and it was definitely not for drug or alcohol abuse problems.
So, as Daniel became increasingly violent, and his rages lasted for hours at a time, we found a pediatric neurologist who suspected Daniel had a form of autism or pervasive developmental disorder, but that he wanted to send him for a complete evaluation to pin down the diagnosis. We took Daniel to the University of Utah, where after a complete examination of both Daniel and his history, he was finally diagnosed with Asperger Disorder. We knew we were in the right place when one of the first questions we were asked was "Does your child regularly embarrass you in public?" As I flashed back to the afternoon we had to haul him kicking and screaming out of a computer store because we wouldn’t buy him a package of batteries to eat (something he would do if given the chance), I had to answer that one with a "yes".
We were undenyingly relieved to finally have a professional diagnosis in which we could believe. Little did we realize, that this was just the beginning. Before we had the diagnosis we were told that we couldn’t get services without a diagnosis. Now, we had one, and found out that we couldn’t get services because Daniel was neither considered mentally ill, nor was he mentally retarded. The words "Pervasive Developmental Disorder, Asperger Disorder, and autism, had little meaning to people who believed the cutoff IQ for services was 70. People started mentioning phrases like "poor parenting, lack of structure, and my personal trigger, failed adoption". I doubt there are many parents who have had the training we have, Daniel had more structure (we had to have this to survive with him) in his life than any child we knew at his age, and Daniel’s problems were certainly no indication of a "failed adoption".
It was time to go back to the Internet, and to Daniel’s adoption worker. I researched, made phone calls, discovered resources, and learned a tremendous amount about Daniel, the system, and myself. Daniel’s adoption worker informed us about the possibility of adoption subsidies for special needs children, and supported us in applying for one. We pulled together Daniel’s medical records and applied for and got a Katie Beckett Medicaid Waiver, which provided Medicaid, thereby opening our access to community services, personal care services, and speech therapy. Our experience gave us the courage to tackle the school system, who still insisted that Daniel was a normal child suffering from bad parenting. Five weeks after school started, and he had beaten up teachers and students, run away from school grounds and got to the edge of a deep pond where he was all set to jump in so that he could be rescued, and mooned the entire student body, the school district finally began to believe us and moved him to a different school where he was lucky to have the best teacher in the world. The school still refused to heed our warnings about behaviors, but they finally took us seriously when he tried (and nearly succeeded) in jumping out of the back emergency door of a moving school bus. With Daniel’s dangerous behaviors escalating rapidly, we began to wonder if we would be able to simply keep him alive until his 6th Birthday.
Despite all of our efforts, and the efforts of others, Daniel was getting bigger, stronger, and more bizarre in his behaviors. After his PCS aide required medical attention twice in one month because he had bitten her, my husband and I were bruised, battered, and completely exhausted and our house was being destroyed faster than we could fix things, a wonderful doctor came to our rescue and suggested that we put him in an Intermediate Care Facility for the Mentally Retarded (ICF/MR). He helped us find just the right one to suit Daniel’s needs for safety, supervision, and therapy. Putting your child in a group home is a terrifying concept, but we had run out of options to try. Some people who don’t know Daniel may condemn us for doing this, but everyone who really knows Daniel supports our decision totally. We made this decision for Daniel’s safety. Daniel bolts at every opportunity, has no concept of danger, and is obsessed with dangerous things such as electricity, fire, and construction equipment. He has no fear of anything but loud noises and power outages. He can recite every safety rule, and then immediately bolt into the center of a busy street because he sees a sparkle in the asphalt. He’s completely unpredictable and lacks even rudimentary common sense. At the group home, Daniel is happy, a favorite kid because he is so adorable and verbal, and they have enough round-the-clock staff to keep him safe. They also have a controlled environment where they can run behavior programs that would be impossible for us to do at home without the staff. Daniel has an active social life, goes somewhere exciting almost every day, and is making improvements. We didn’t just dump him off and forget him either. We talk to him every day, and get daily reports from the staff. If Daniel sneezes, I want to hear about it, and the group home is being very understanding about my interference. We try to see Daniel at least once a week, and continue to actively advocate on his behalf.
There are still rough times, and there always will be, but we have had, and will continue to have good times too. Daniel functions socially and emotionally at a two year old level, yet his vocabulary is above a nine year old level. Academically, he is at or above grade level, and is entering first grade this year. He still has problems with aggression and violence, and obsessive interests. He is also extraordinarily polite and thoughtful. Daniel is very empathetic (when he’s not raging), loves and is kind to small animals and babies, hates to see anyone hurt and Daniel will always stand up for and protect the underdog. Unfortunately, he can’t understand that sometimes he’s the one who hurts people, but he hates to see them hurt and cries just the same. Daniel doesn’t understand social consequences, and will bully and boss his peers, older children, and adults. He doesn’t understand physical consequences either, and will put his hand on a hot stove or in a fire, even though he knows and can recite the safety rules and has been burned before. He doesn’t seem to feel the sensation of pain in a normal manner. Daniel also never seems to forget a thing. He can remember every road he’s ever been on, can give detailed directions about how to get to destinations, knows practically every type of fire truck and piece of construction equipment made (and what it’s used for), can tell you exactly where he was when he first heard any song (ie. In dad’s truck on the road to our house, or at the shopping center), can’t tell you the name (or maybe he can) but he can tell you the very first cartoon he ever saw when he was a baby if he sees even a snippet of it again. Daniel can tell you where every fire station is in this area, and what kind of equipment they have. He knows who gave him every piece of clothing he owns, right down to his underwear. Last year, Daniel was a local TV hero when he saved our house from a fire in the middle of the night (guess there is an advantage to not sleeping, and no, Daniel didn’t start the fire. Everyone asks that). He’s a real ham for an audience, and charms practically everyone who meets him. No one forgets Daniel. He’s special to so many people, and has touched many people’s lives just by being himself. Daniel has many talents, and it’s our job to see him safely through his childhood while encouraging him to do his best.
We still are, and always will be Daniel's parents, and we will never give up on him. Yes, words like autism and Asperger Disorder are scary to contemplate, especially when you are at the end of your rope and the words sound like just one more bleakness to add to your life. Then, with education and support (which we got in abundance from the Internet and our friends and family, and surprisingly, from the state agencies, once we were able to educate them). Asperger/Autism, and the alphabet disorders are no longer a threat to us, but a challenge and a delight. My son may see and experience the world differently than most of us do, but the occasional glimpses I get of the way he sees the world tells me that he sees it as a lot nicer place than maybe the rest of us do. Trying to see the world as he sees it has given me a lot of insight into Daniel, and into myself, as well as others with disabilities. Daniel's world is full of beautiful things that most of us take for granted, but he notices everything and takes everything in. He sees just as much beauty in the lumps on a frog, as he sees in a perfect tulip. If he has to rub his feet repeatedly on carpet before he will walk out the door, he has an explanation. He says that he runs on electricity and needs to get his power charged up before he goes outside, so that his batteries don't go dead while he is out. Some of his ideas may seem odd, but they are usually charming. Being around Daniel is never boring, although it requires a lot of self control to avoid bursting into laughter at some of the things he comes up with. The other day, he yelled for me to come see the "box" of birds in front of our house. There was a beautiful and very large flock of birds there, and he insisted they were a box, not a flock, because if you caught them all they would fit into a big box. Daniel has generated more smiles and merriment in people's lives than he will ever know. We are very proud to be his parents.
If you find yourself with a child who has been recently diagnosed with an Autistic Spectrum disorder, here is my unsolicited advice. First, take a deep breath. It's not the end of the world, it's a new beginning towards understanding your child's different world. Second, educate yourself, and never stop learning, about your child, the diagnosis, and services available in your community. Advocate for your child, because no one else will unless you keep up the momentum. By the time most children are diagnosed, we as parents have already made major modifications in our lifestyles to accommodate our child's needs. Unfortunately, almost all of us forget to take time for ourselves because we are required by circumstances to spend every moment with our child (due to lack of respite, child care, money). Make time for yourself. It's not a luxury. It's just as important for your family health as a balanced diet. Talk to other parents of children with similar disorders. You will most likely never find another child exactly like yours, but you will find a lot of common ground. Join a support group, or start your own. Help other families in similar situations. Many times other parents just need a sympathetic ear and understanding from someone who has been there. Provide as much structure as you can in your child's life. Always be on the lookout for the special things that make your child so wonderful, and for the small advances that maybe others would overlook. Always let you child know that they are loved, valued, and appreciated, even if they don't or can't respond to what you are telling them. Expect the best from them, even if that best is finally learning to hold a toothbrush. Expect the worst from them sometimes, and love them anyway even if you aren't happy with what they are doing right at the moment. Ignore the unimportant, but possibly irritating stuff they do. You can't change everything, so work on the big stuff. Most of all, look for the goodness in every child and every person and you will find it. Once you find it, hold it in your heart and appreciate it forever. Take heart too, in that our Daniel is severely disabled due to his condition, but most kids with Asperger Disorder are not so nearly affected by it. Daniel is an extreme case, and there is still lots of hope for his future. His prognosis is good. He's made wonderful strides ahead, and we expect that he will continue to learn how to live and function in our world. I know he will make it!
Daniel is still our "Perfect Child", and he and his disability has taught us things about patience, tolerance, commitment, understanding, and advocacy that we may never have learned had we adopted a "perfect child" in the more common usage of the phrase. Yes, Daniel is the most perfect child to us, and the most important thing is that underneath all of the hassles and behaviors associated with Asperger Disorder, is that Daniel has an innocence and a heart of gold, and is an inspiration to everyone who meets him. That is and always be Daniel.
If you wish to copy this for your own use, feel free to do so. If you wish to use any or all of this article, for any other reason, please contact me at twibil@micron.net. Publication in part or in whole by any party, in any medium whatsoever is prohibited without my permission. Permission for a good cause will be easy to obtain, so please take the time to ask. Thank you very much. Lee Podolan, August 11, 1998.
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