I am writing this for my daughter who is 34 with Autism. She became my daughter in 1980 when I was living in Norway. We returned to the USA in 1983 but my daughter even after 30 years is still not an American citizen. Here’s part of her story….
My oldest daughter, Maigunn was born on January 10, 1979 in Hammerfest, Norway (the northern-most city in the world). When Maigunn was 5 months old, she was sent to an orphanage across the county in a town called Vadso near the Russian border. There she remained until my now ex-husband and I received her at 23 months as a foster child. We were told that she was stiff like a doll and may be mentally retarded but the staff also thought it might be just the orphanage environment. Norway like most “Western” cultures believes that children should be raised in a home and not an institution. Most of the orphanages in Norway have only severe mentally impaired children with very strange behaviors. The staff felt that if Maigunn were part of a family that maybe she would be normal once she wasn’t exposed to these behaviors. When the woman in charge of adoption in northern Norway called and requested that we come to Vadso and see Maigunn; I was visiting my family in the USA; not having been back for 3 years. So my ex-husband went alone to see this little girl. When he arrived, he immediately fell for this little toddler, called me and it was agreed that we would take her. She would be our “long-term” foster daughter, just like an adoption. (This has come back to haunt us even today.)
So my mother and I began buying clothes, shoes, toys and other toddler supplies. I sent several boxes to Norway, prior to my return and remember that my ex-husband was in tears upon opening them.
My first impression of Maigunn when they brought her for a visit was that she was blind. She looked straight ahead with no eye contact. The other thing I noticed was that she loved spinning objects. (These are two of the classic signs of Autism) At the time if someone had said, “Do you think she has Autism?” I would have responded with “What’s that?” Even as a physical therapist, I had no exposure to this disability and very little was known and there were very few treatment options.
Maigunn at 2 years had no language, had just begun to walk so she had that abducted or teetering gait that is so typical in babies just starting out on their own feet. So the first task was to get language. I don’t know why but it seemed natural and was an international word so we started with, “Baby”. Phonetically and developmentally, I think “B” is an easier consonant to say than many other consonants. Well it took 9 months where she studied our mouths and felt our lips with such intensity that you’d have thought she was discovering the contents of the Rosetta stone. I remember one morning waking up to Maigunn’s chatter of saying and half singing “Hakke” which is Norwegian for chin. It must have stimulated me for after that I began singing songs to Maigunn with the word “Baby” in them; everything from “Rock-a-bye Baby to “I love you and don’t you forget it, Baby”.
As a physical therapist, I knew that we only had a limited amount of time to catch up. When she was almost 3 years old, she was evaluated at Mary Free Bed Rehabilitation Center. At that time, she was 1 ½ years behind and the gap would only increase if she couldn’t make significant gains in a short time.
The summer of 1982 was a turning point in our lives. My mother was very sick in the hospital with hepatitis, and Norway had no services for Maigunn until age 7; so we decided to return to the USA. Even then it took another 2 years until she was diagnosed with Autism and placed in special education through the public school system.
The negatives have been numerous.
Like the first pediatrician we encountered in the U.S. who upon doing a preschool check-up, found that Maigunn was in the 75 percentile for height and weight and told us that we should consider institutionalization since she was bigger than most kids her own age and therefore could be dangerous to the other children.
Like the time at a playground when a mother hit Maigunn for choking her child in the same manner her daughter had just done to Maigunn. Unfortunately Maigunn thought the other child was playing a game with her and didn’t understand that the little girl was being mean to her.
Like the children who chased Maigunn on the way to her school bus stop, so that she ran out into the street, almost got hit by a car and lost her new pair of glasses. And when I tried to get the school to change the bus stop just three blocks down the street, they refused.
Like the neighbor children at the end of the block who chased and teased Maigunn every time she road her bike past their house until she got wise and began taking an alternative route which of course was on a busy street.
Like the teacher who misplaced Maigunn’s lunch money envelope on her messy desk and blamed Maigunn for being forgetful (the underlying idea was that she was handicapped and therefore couldn’t remember her lunch money). Only later to find out that the lunch money was on her desk after all. However the Principal did call and ask if Maigunn wanted a formal apology. Of course she didn’t since Maigunn just doesn’t hold grudges.
Like at the Middle School Formal Dance where a bunch of students egged one of their group to ask Maigunn for a dance. He then made faces behind her back the whole time, while I stood by watching, debating whether or not to step in and deciding that these things are going to happen. But once again thanking god for Autism since she never realized that they were mocking her.
Like spending time and money to have Maigunn trained to take the city bus only for the bus system to change the bus route numbers the following year so she ended up taking bus # 5 which instead of going to our neighborhood, now went to the airport. So rather than getting home at 4:30, we got a call at 6:30 that the bus driver left her at a gas station 3 miles from our home. (Of course from 4:30 until 6:30, I had been driving around frantically looking for her.)
Like the time a boy made sexual advances towards her after she was done with a running workout at a high school track. But again she was saved by her ability to run away and fast.
Like the neurologist who sees her briefly, diagnoses her with schizophrenia and negates all the current literature and research on Autism even though as a parent, I have done more reading and researching on the topic than he’ll ever do in his lifetime. But still unwilling to listen to me.
But there have been positives
When I went to the first school Christmas pageant that Maigunn was in and watched as the children marched in line onto the stage. Then it was Maigunn’s turn to go on stage with the other students. She stopped at the entrance, stared out in to the audience and didn’t move until the student before her came back, took her by the hand and led her to her place. When they sang she stepped forward and sang with her whole heart. At the end of the performance she mimicked the audience and clapped her hands along with them. Friends who knew Maigunn and me looked my way and smiled. It was one of those priceless moments that I wouldn’t have missed for the world.
When the Brownie and Girl Scout leader, Sharon, had no qualms about including Maigunn in their troop and treated Maigunn like one of the girls. And Maigunn wanting to be just like the other girls was the first one to approach the principal and sell a box of cookies.
When her piano teacher, Maxine, was not a stickler for learning how to read the notes but let her enjoy the beauty of playing the music. Maigunn plays the piano by ear.
When my daughter says; “Mom you need a hug” when she really means, “I need a hug.” And realizing that we conquered the sense of Touch, which is extremely difficult for people with Autism.
When she succeeded not only in being on the High School Cross-Country and Track teams. But by being able to participate as a regular student in a regular Ed sport and achieving MVP (Most-Valuable Player) Junior and Senior years for Track and received “All-City” for Cross-Country her Senior year. She accomplished what most kids with Autism rarely get: the acceptance and respect of regular Ed students as one of them.
When one of the girls who, along with her friends, mocked Maigunn behind her back at the Middle School dance, now admired her in High School for her running ability since she could never run as fast as Maigunn even though she was not handicapped.
When at a track meet, a parent from another high school came up to me and told me that my daughter was an inspiration to their team. We had talked a year or two before about my daughter and her handicapped condition and he and his team had watched her develop over the years and used her as role model for their team.
When I know that living and raising Maigunn has made me grow both personally and professionally. I’ve become a more realistic therapist and now have more empathy with my patients and their families.
When I remember the wisdom, Maigunn has expressed. Like the time I asked her during her freshman year in high school if she wished that she didn’t have Autism and she replied that she thought it was part of her. Later in her junior year her response was that she wished that she wasn’t Autistic. And now she tells me that she has to get use to this Autism.
Then there are the challenges.
Such as the years of being on the Parent Advisory Committee for Special Education in the Public Schools then on the board for the local Autism Society and finally on the state Autism board.
Such as my many job changes to accommodate my children’s needs
Such as the numerous letters of thanks and concern sent out to try to get better understanding by the public and the politicians.
Such as the loss of a marriage
Such as the hours of running with my daughter so that she would be familiar with the cross-country running courses
Such as the hours of job coaching so that she wouldn’t loose her job while she was going through a rough time.
Such as taking the chance in signing up Maigunn with the G.R. Jaycees and watching her be able to be part of a group where she is not ridiculed for being handicapped.
Such as attempting to set up private housing for my daughter so that she is in a safe and secure environment before I die. Only to find that many parents of handicapped older children do not want to talk about it. And that they are content with letting the state take over when they die and not realizing how devastating their death and change in housing will be on their adult child.
Such as the wish that we as a society would be more handicap accepting. Knowing that most of my friends would not want their sons to date my daughter. And many of my friends would not consider living in a house with a ramp even if it were aesthetically pleasing.
And thanking God for good professionals who have an uplifting approach to disability and see that they have rare talents that the rest of us do not.
And finally, the Reward
When my daughter says: “Mom, you’re the best mom this girl ever had.”