Motherhood with an Autistic Child |
Relax. He is the same little boy you loved yesterday. I smiled trying to hold back the tears. "No he isn't. Yesterday I dreamed he would be an astronaut. Today I am hoping he will learn to talk. He is not the same at all. And neither am I."
It was like some sort of cosmic joke. So fearful of having children and certain I didn't want to, I found myself pregnant. Sitting on the cold hard toilet seat and staring at the urine soaked stick in my trembling hand, my life was over. I looked again. Nothing had changed from those three treacherously long seconds ago. A third quick check revealed itself to me for the last time.
"Yes"' it seemed to laugh at me, "You are going to have a baby. Do you understand the concept?"
It was not hard to appear calm exiting the bathroom and entering the bedroom to where Robert, my husband, was. Shock can fool the audience into believing the actor is unnerved. He was watching TV and the light from it gave a somber glow to the usually cheery pink room."Do you think we could turn that off?" I said, pushing the button.
Looking him square in the foot I pronounced, "I am pregnant. No response.
"Did you hear me? I am pregnant. The apartment was so quiet I could hear the faint whirring of the washing machine downstairs. He looked and slowly rose to wrap his strong arms around me.
"Bobby, what are we going to do?"
"We'll figure something out sweetie. We'll figure it out."
Looking up into his green bedroom eyes, lacking the twinkle I had come to expect, I pushed myself further into his body, sure this was a mistake and tomorrow would bring the answer I prayed for.
It was October in Ottawa and the summer breezes had given way to the autumn rainfall of leaves. The snow would begin soon. The crispness of coming frost was in the air. Starting right away, the engine hummed as the road passed under it, the radio staying eerily silent. In no mood for singing or chattering DJs, I went to the doctor to determine my fate.
Pulling up to the office, the rain started. Opening the door and beginning the long climb up the stairs, I wondered why no one thought to put in an elevator. The sign "remove your shoes" was old and faded but did its job and I felt nauseous from the odor of stinking feet. The room was crowded with bare footed people trying to feel normal in their unaccustomed nakedness. The doctor smiled passing the waiting room but I did not return the usual greeting.
She confirmed the results presuming my happiness and was mystified at my reaction."I thought you would love children," she said. "You are married aren't you?"
"No. I mean yes I am married but no we don't want kids. This was an accident. Why do people with children always assume that anyone married wants to breed? "
She felt compelled to tell me that while I did have options, she was not for them and so could not continue to treat me if abortion was a possibility. She would agree however to give me the name of a counseling service if I wanted to go that route. I did.
The building was a heritage site downtown. Robert was holding my hand as we looked at the address. I had spoken to my best friend the day before and being a nineties kind of guy, he reminded me that this was my body and I made the choices. I had always believed that but somehow now it was not a responsibility I wanted to bear alone. This thing, I could not yet say the B" word, inside of me was a problem for both of us. Entering we noticed all kinds of pro-choice signs and birth control literature.
" A little late for that now", I thought to myself.
One night without a condom was all it took. We felt out of place amongst the average age of the clients there. They should have been enjoying high school dances and Saturday night movies not facing the same dilemma I was now in. I had to take another pregnancy test however insistent that I had now performed this act twice and was sure. "Rules are rules" the receptionist said.
I found myself behind the iron curtain once more. The truth be known, I was still hoping that the results would be different and I could walk out a free woman.
"The counselor will see you now."
She was a rather short woman and for some reason I thought to myself that she probably had no kids, lacking the caring, sensitive qualities one comes to expect in a mom. She made me clear of my choices. Everyone seemed to want to tell me it was mine to make. Oddly enough, both Robert and I knew as soon as we had entered the center that the choice was clear. There was no alternative, though we didn't have the courage to say it to one another. or ourselves. We would keep this child.
Time passed eventfully. My parents received the news with absolute joy although Rob's mom was very hesitant about the idea and chose to mention we had options in this day and age.
" No we don't," was my quick response to the rather hurtful innuendo. "We have made up our minds and we are going to have a baby."
Robert's father was bursting with delight. The rest of our families were more surprised than anything else but all were excited by the news. At home we tried to find a way to feel good about our decision.
I resented this child inside of me and the freedom it deprived me of. I would sit in restaurants craving a coke and ordering milk "for the baby". Christmas came and I would smile that artificial greeting I had grown to perfect " No, thank you , I can't drink wine.I am pregnant." God forbid anyone know just how unhappy I was.
Robert left early one morning for a day of skiing without me. I was furious that I couldn't enjoy this favorite past time "cause of this thing inside me". As the car pulled away I watched the snow falling on the already white yards around us. So pure, so tranquil unlike the monster raging inside my mind.
The refrigerator was covered with magazine cut-outs of chubby, happy babies. Some were cuddling their mothers, some were sleeping as gently as the a butterfly flaps her wings. All had the same agenda - to lure me into their intoxicating world.
I didn't go down without a fight. Birthing classes were a bad idea. Coming home after every class, I would burst into tears at the thought of what we were doing. In class I would mumble to myself that I should have gotten rid of it when I had the chance. The sight of all those disgustingly gleeful parents-to-be made me revolt further. I could never be like that. I could never gush at the thought of my child.
Robert was an absolute godsent to me during this ordeal. No matter how much I cried ,his patience never wavered. Complaints about my weight and girth were responded to by compliments, smiles and understanding. Holding my hand through every doctor's appointment and feeding me to make sure my fainting spells were held to a minimum, my partner took such good care of me during that time it was almost worth getting pregnant for.
When my first son was born, the fears did not go away holding him. Will he grow up too fast? Will he be loved enough? Will I be a good parent? The questions of every new mother. Not sure exactly when it happened, I fell in love with Wyatt. In love because to say I love him simply is not enough. It doesn't relay that absolute way he took over my life. Not just a child, he was the center of my universe.
We moved to a new city, away from my mother, father and entire support system, when he was just seven weeks old. Four hundred and eighty kilometers and a long five hour drive away. How would we make it? We just would. That's the way our marriage works. Life was good and hard in our new home. I finished my maternity leave, found someone to care for our precious boy and went back to work three to four days a week. It was a perfect blend of career and motherhood but...
My life was changing direction again. We were heading for Vancouver, a big step from Toronto. Little did I know what it would hold. We chose a perfect spot to call home, a small farming and fishing town called Ladner. It has a large "city folk" population who work in Vancouver and is a beautiful place to raise children. We choose it because of the tranquillity of the village center and proximity to the shore. The recreational facilities were better than any I had seen, the people friendly, down to earth and likable. We could walk to the store, park, duck pond, harbor and village. It offered all the amenities a young family could want and more, so much more.
Many days passed by with Wyatt and I enjoying each other's company and learning about all our new home had to offer. Together we joined a moms and tots group, swimming lessons for parents and babies, a little tikes gym and music classes. We laughed and played together all the time. Memories I will always cherish. On week-ends Robert would join us for a walk around the sea wall in Stanley Park or a picnic by the beach redardless of time of year. Something magical happened when we were all together and we knew Wyatt felt it too. He was always at his best when both Mom and Dad were there with him. That cosmic joke was still around. I didn't return to work, choosing to be a stay-at-home mom. My son and I were learning so much from each other that I didn't want the precious spell to be broken. I realized he was a special child.
"He loves to play on his own for hours at a time," I would brag. "That's how I am able to continue with my painting. He sits in one room and plays with his trains and I paint in the other. He never gets into trouble."
That old adage of don't trust a quiet child didn't apply. He was never up to something. He was just a good kid. Wyatt loved to laugh and roughhouse. Extremely affectionate he gave wonderful hugs and kisses and appeared to most people to be perfectly normal.
Times were tested for us. Loving my new surroundings, I missed my family terribly and resented Rob for moving us away from Toronto, my job, and my relative proximity to my parents. His relationship wasn't as warm with his family as I with mine and therefore couldn't understand the feelings of pain and longing. We drifted apart for awhile. He had the excitement of a new position to fill himself and I was feeling lonely for adult conversation and companionship. At my request, we entered into counseling in our sixth year of marriage resolving to change our ways and stay together. Within a surprisingly short few months our therapist was saying goodbye to us with a smile that left us knowing we were on the right course .
I was pregnant again and going through this nine month celebration alone as Rob grew distant again. His mother,Christa, had taken seriously ill with a disease no one could name. It was quickly, hideously, taking her from us and there was nothing to be done. Wyatt was now a little more than two years old. God was again testing my will. By three Wysie was talking ,yet not the way one might expect. He could recite Bambi from the video and did so with such enthusiasm that I believed he must know what he was saying. In hindsight I know that he has echolalia. I had never even heard the word at the time much less knew it was a problem. Having spoken to his doctor again about the lack of conversation, I was put off with "Don't worry it will come. He's just a late bloomer. I chose to believe him. He was our doctor and we liked and trusted him as people are supposed to. Wysie and I would sit across from each other in a restaurant. I was asking questions and receiving no look, no response "This is normal. He is a little boy who is not talking yet," I thought. Being my first I truly didn't know better. He was certainly capable of playing with other children and in fact had a best friend with whom he played every week. Together they could spend hours on the beach laughing and running and being little boys without a care in the world. Marshall would talk for both of them and Wyatt would do whatever his buddy asked of him. At the same time, he could also be the leader knowing that his friend would always be there on their way to the next adventure. With groups of children he would play contentedly by himself or alongside a particular child. I justified that with the thought that he either didn't like one of the children or was still at the age where children played beside rather than with each other. In actuality that was true. He was about 2 1/2 at that point and was still doing the normal thing.
What surprised me the most was his willingness to share his trains with this one person in his world - Marshall. I longed to be held in that same regard. He would never let family play along side of him or touch his toys. They were sacred. I found that odd but certainly nothing to worry about. On July 22 1997, Christa was taken from us. We knew then that she had suffered from a rare form of ALS, Lou Gerhig's disease, and died much sooner than anyone could have predicted. I drove to his office to tell him in person then came home with him in the car. He was in shocked and realized that the trip next month to see her was not to be.
On July 23,1997 Matthew was born, not twenty four hours later. How the love of my life got through that time I will never know. With the incredible inner strength he holds, he stood by me to deliver our son and then was gone. The first week of our youngest's life, his Daddy spent across the country tending to his mother's funeral and father's grief. I stayed home with our two children and tried not to think about his pain.
In an effort to give Wyatt a break from his little brother and allow us both some breathing time, I enrolled him in a summer day camp program. For 3 hours every second day he would go and play with other children and Matthew and I could relax. That Wysie wasn't toilet trained at 3 was an issue for the teacher but I assured her that we were just down the street should the need arise and we really wanted to let him stay in the class. She agreed. After 2 days she started to comment that he didn't stay for circle time and would rather play on his own. She complained about his not being potty trained although that problem had not yet arisen. Again she said Wyatt didn't seem interested in what the class was doing. I was livid. What was she trying to say? When she mentioned it again I assertively suggested that perhaps circle time was boring or the fact that the toys were in plain view might be distracting for some children. By now I was certain that she had it in for him and would pick on him any chance she had. Finally, she said all he wanted to do was play with trains and perhaps his hearing was not right because he wouldn't answer when called, choosing instead to ignore her. I thought that this woman had no right to talk about my son that way and when she suggested I speak to my doctor about him, I furiously replied that he reassured there was no problem. We left knowing we would not be back. As it happened, Matthew was due for his six week check-up. Casually mentioning to Dr. Martin the comments made the week before, he started asking me questions about Wyatt's behavior, play activities, speech patterns and emotions. I still see clearly in my mind the sterility of the room and all its belongings when the doctor turned to me and said, He almost sounds autistic."
My jaw fell and all too quickly he reversed and said "I'm not saying he is but it sounds like it. We should probably get his hearing tested to be sure he is not deaf."
Wyatt, Matt and I left in haste. I remembered a bus advertisement that showed a boy with his head in a box and the world outside of it. That was 18 years ago on my way to school and for some reason it stayed with me. All I knew of autism was this sign. And that my son didn't have it. After some discussion Robert and I decided to go back and request the hearing test, a visit to a speech pathologist and "whatever test you do to find out about this autism thing." We would do it all and get to the source of the lack of language sure that it would be minor as he was a bright boy who was lovable and sociable and a part of our world. That certainly was not autistic. Within three weeks, we were starting a journey we have yet to finish. An endless stream of tests, assessments, questionnaires, looks, nods, and opinions. None conclusive, all just someone's best educated guess at the situation. Wyatt was put onto infinite waiting lists for more assessments, definitive answers and invaluable guidance. The first appointment of the adventure ended with a suggestion that he start immediate therapy of at least two hours a week if we wanted him speaking by kindergarten ,get him involved in a non-team sport and call the autism society. We were going to need them.
I did that as soon as we arrived home from the hospital and when they asked what I wanted I replied in all honesty "I don't know. My son was just assessed with autism and the doctor told me to call you. He didn't tell me why or what I needed to know. He just said call and so I am. To say I will be forever indebted to the B.C. Autistic society doesn't do them justice.Photocopied page after page of information they mailed to me at no charge, without so much as a donation request. I will be thanking them forever.
When Wyatt was born I gave him to God's care. I prayed that He watch over him and in exchange I would make sure that our son was raised to know Him. As one might imagine, my relationship with God was tested during this ordeal. Surely I had never done anything in my life as to deserve this and even if I had, I knew Wyatt hadn't. I went through the stages with him as I would have with any human who had betrayed me. Hurt, anger, denial of existence all ran through my mind and in fact at one point God and I were no longer on speaking terms. He did not keep his end of the bargain and so I no longer felt a need to keep mine. Besides, I thought, he had no need to know a mean spirit like that anyway. My heart went cold and my belief was no longer absolute.
For eight months a friend and I had been pregnant together with our second children and watching our sons play alongside one another. The boys were six months apart and the next two would be even closer. We exchanged baby-sitting weekly to gain some quiet time until the pregnancies didn't allow for us to take on each others' child anymore.
Once I had learned about Wyatt my life was upside down and she couldn't relate. I remember her saying, "Relax. He is the same little boy you loved yesterday."
I smiled trying to hold back the tears. "No he isn't. Yesterday I dreamed he would be an astronaut. Today I am hoping he will learn to talk. He is not the same at all. And neither am I."
After that our friendship quickly dissolved. I knew then that this was entirely my doing. A while later I called her to tell what had been going on in my mind. "I can't be around you anymore. It is too painful. Don't you see? You have the life I was supposed to have, a normal boy and a brand new baby that you can love and enjoy. I want that ."
I later read a passage by Jane T McDonnell that fit my feelings perfectly. It is a complex and ambiguous grief parents must feel when they must mourn the loss of a child who might have been, while at the same time struggling to care for the child that is. (news from the border: A Mother's memoir of her autistic son)
It had occurred to me that now even though he was old enough to be sent to pre-school, the timing might be wrong. With a new baby in the house Wyatt might feel as though he was being pushed aside when he needed to be held close. On that assumption, we decided to wait until January. I felt that pre-school wasn't a necessary step in the educational journey anyway. I remembered what that recreational teacher had told me a while back. Some center out in the east side of town worked with speech delayed kids. I gave them a call hoping they could tell me what to do next. They suggested I come out and visit the center and bring the kids with me.
The Delta Association for Child Development turned out to be a wonderful place, not nearly the clinical arena I was expecting. It is in fact 2 pre-school centers with a host of support systems built right in. I was informed that one school taught children with all special needs except autism, mixed with a balance of children who were developing typically. The other was more specialized in that it taught typical children and autistic children only. I couldn't believe what I was hearing. Here in the small rural town of Ladner, British Columbia was the only pre-school of its kind in Canada. My heart leapt prematurely.
After meeting with Joanne, the director of LEAP, as it is known, she told me that the school was full and there was no way to get Wyatt In. I swear I could almost hear God laughing at his own hurtful games. Whoever said the Lord giveth and the Lord taketh away was bang on. That universal puzzle was still lurking. Joanne led me down a hallway that led to another office. There I was introduced to yet another section of the group, "This is Stacey del Fabbro. Her son needs supported child care." She briefly filled in Linda of the important details and left promising to help me any other way she could. Neither one of us could have known how this brief encounter would change my life.
Leaving the association that day I had a list of new contacts to make and an agenda to fill. Wyatt was to start pre-school as soon as I could find him a spot. This being October, I wasn't sure how that would go. I knew that I would drive to Hell and back everyday if that was what it would take. Suddenly the urgency of school was all consuming to me. I saw it as therapy for him rather than a play group and he would get it.
The next day we stood outside the doors of Animal Crackers Daycare. This was the only spot open in our town and only one was available in the next one. A friend told me that it was a good school and her daughter had attended there. That helped calm my nerves a little. Once inside it didn't matter what anyone else thought. Wyatt ran into the ongoing class and started to play with the toys. He was perfectly at home. I met with the owner and teachers and I too, felt at ease. We came from the same hometown. The best part was that it was a very small class of 8 children so he would get a lot of support and attention. I had accomplished my goal for the day. The next few months were spent reading every thing I could get my hands on concerning anything remotely connected to this new subject in my life. I had a beautiful new baby to care for and I couldn't allow myself to become close to him for fear that God would take him from me too. It was quite a while before I realized that I was unconsciously doing that. I don't know how he remained happy because my level of tension and sleep deprivation was high. While he slept, I read. While he nursed, I read. While I cried, he watched and that was often. The lack of sleep, hormonal imbalances and misery had become too much. My temper and my patience were short. Every nerve ending felt as though it was on the outside of my skin and every noise was rubbing against it. I could no longer tolerate things that most people wouldn't notice. Begging for help from anyone who would listen, people either didn't take me seriously or didn't realize the depths of my despair. At one point I hit rock bottom.
At the park one day I was watching Wyatt, he was different from the other children. They were playing together or in small groups huddled around a sand pail or toy truck. He was playing games that no one else could conceive of, let alone join in. He was happy, and no doubt wanted to be there, but it didn't matter whether others were there or he was alone except for wanting me to push a swing or tickle him. That was the part the was confusing. He did laugh at our games, did watch out for me and would join another child who was running wildly across the park. He just ran to a different drummer.
Suddenly I noticed he was licking the chain fence. I couldn't believe my eyes. I had just put out a picnic lunch that was quickly refused and now I was watching my three year old boy licking a cold metal snack that no mother would provide. I couldn't cope with that picture in my mind. I had to run to get away from this all too painful place that was reminding me of what was to be my child's life. Strange.
Grabbing up our belongings fast I called to Wyatt that we were leaving. He was not happy. Since Matthew had come along ,we never seemed to make it to the park and now we were leaving almost as soon as we got there. I took the cooler, the baby bag, and the car seat with Matt in it, a heavy load I could manage except that Wyatt would not leave willingly and I would have to carry him too. The car was about 150 yards away. He was screaming madly and hitting me on the back as I hoisted him over my shoulder. I started the trek when I heard from behind me a lady's voice, "You dropped your blanket about 10 feet back." She didn't offer to pick it up for me which meant I could leave the blanket or put Wyatt down. I didn't think it through. I should have. He ran as fast as he could the minute I let go. I had to drop everything to chase after him then bring him back and pick up the bags, Matthew and the blanket. We headed home.
I threw down my weights and unlocked the door. As Wyatt stepped inside he was told in no uncertain terms he was going to bed and I immediately started to take his clothes off. It was like I was peeling away layers of him. I couldn't stop. Off came every bit of clothing. At this time in his life, he couldn't stand to have his clothes removed so this was a traumatic event. I knew it and I didn't care. I wanted to hurt him and this was inflicting more pain than any spanking ever would. I threw him into his room, onto his bed. He was crying hysterically and all I could do was slam the door. He begged me to come back and hold him but I couldn't. I was almost as afraid of him as I was of myself.
Matt was still in his car seat. Knowing he was safe, I walked out on to the balcony, shaking with anger and frustration too intense to control and called our family doctor. The receptionist was told to take him away from his patient.
"I have to speak to him right now. This is an emergency. Doubtfully, she said she would. A moment later Dr. Martin took the phone. In my hysteria I managed to inform him of what had happened. "I need help. I am afraid I am going to hurt my children."
It was difficult to make this admission for fear that someone would take them from me but at the same time I almost hoped that they would. I had asked a few professional people before and I knew that this time I was being heard. Unfortunately the answer was not what I needed to hear. Ultimately I was told that I would have to hang on til January before a therapist could see me. It was October.
By the Beginning of November, my mother could hear the panic in my voice and asked if she should fly out from Ottawa. In my heart I was dying to say yes but pride wouldn't let me admit to my family how bad things had gotten. Instead I answered that we would be there in six short weeks for the holiday. I could certainly last that long. Could I? I really didn't know. The mind, of course, is strong and the will of a mother is stronger still. I made it. When the plane touched down in Ottawa after the flight from hell, I fell into my mother's waiting arms and cried "I thought we would never make it."
I meant the flight - and the six weeks. The holidays were difficult. Wyatt had a very hard time making the transition and yet never had a problem before. We didn't know what to do or how to help him. We could only leave the house in a certain combination or he would go into hysterics. He fought getting dressed taking an hour at a time. Admittedly there are ways of calming and easing him into the transition by giving him a 15 and a 5 minute warning then one 4,3,2&1 sometimes he wouldn't fight the issue at all graciously getting up and following your lead. Sometimes not. Consequently, I didn't always feel like going through all of that without knowing the outcome. I recall one day my father opening the door to the den where I was wrestling with Wyatt. He was hitting me and screaming as though I was inflicting deadly pain on him and I was screaming back that he would get dressed because I said so. My father stared at me with utter disbelief. What was I doing? My response was a simple one.
"I just didn't feel like playing the game today."
It was that easy. I wanted to have a normal boy who would get dressed when told and I could ignore the fight and pretend that's what I had. I could see the pain my son was going through and it hurt me deeply. I couldn't figure out why he wasn't adapting as he always had before and I didn't know how to help him through it.
As happened many times before, the answer just came to me. We have to bring him home."
Quickly, filled with the knowledge that I was doing the right thing, I ran to the store and picked out several Thomas the Tank engine videos. If anything was to make him feel as though his world was right this would. We had thought to bring his trains with him but not the movies. In his mind they are living , breathing, friends. It couldn't have been more on target. Miraculously the transformation of a distraught, anxious child back to the happy go lucky boy happened almost instantaneously. As soon as he heard the opening music of a world he knew so completely, all was well again. I know now that all of Wyatt's troubles and situations won't be worked out that easily. It has been a long, hard battle to get him to this point, expressing his wants and needs without resorting to violence in frustration. In fact, each new day brings out a new set of challenges for all of us but together we have learned a lot about fighting this thing called autism and we now know that Wyatt will beat it. Yes, he was lost to us for a while but with love and patience we have found the beautiful, happy boy who would teach us more about parenting in four short years than many learn in a lifetime.
And that is the solution to my cosmic riddle. I didn't have anything to fear in parenting. I had everything I needed all the time.
Anna Colson | November 27, 2007 at 7:04 pm - §
I cried so hard when I read this. I was just told that my three year old son may have autism. I cried for the fact that I don't know what's going to happen or how I'm going to feel when I know for sure.
Lyanne Lavigne | July 25, 2008 at 3:47 pm - §
I truly enjoyed reading this straight-forward, emotional and candid account of a mother's struggle with her autistic son as I have felt exactly the same in many situations with my own autistic son. Reading this account, I felt unified with this mother and my solitude was broken for a short while. She was able to put words to emotional, inward lived situations that are all-encompassing. Thank you!