Elizabeth and I first connected on Twitter, then via email, and quickly realized the similarities in our personal journeys. I’m excited to share my recent conversation with Elizabeth. I’m confident her intimate words relative to raising her son Stone will touch your hearts and resonate home as they did with me.
Anne: How old was your son Stone when you suspected something wasn’t quite right?
Elizabeth: Stone was two-years-old when I realized something wasn’t quite right. The realization came about after a conversation with his pre-school teacher, Kathy, when we were living in Pittsburgh.
Kathy absolutely adored Stone. Stone at that time was, and still is, very lovable, fully of energy, and very affectionate.
However, Kathy noticed that Stone preferred playing alone. She said he preferred not to interact with other children, and didn’t want to join in group activities. He especially didn’t like loud noises and didn’t like music and singing. Kathy told me in a very loving way that Stone was “just different” from the other children. I didn’t worry very much at the time about what Kathy told me. I just assumed this was part of my child’s personality.
Anne: How old was Stone when he was officially diagnosed?
Elizabeth: Stone was officially diagnosed with Asperger’s when he was nine-years-old. It took twenty-three experts in three states to finally get the diagnosis. Prior to that time, we were dealing with inaccurate diagnoses and dual diagnoses. It wasn’t the easiest of times. With many cases of autism, there are often dual diagnoses involved which can make things more complicated. When Stone was four-years-old while he was enrolled in a pre-K program at a Catholic school, I knew by that time that there was “something going on.” I kept telling my pediatrician that we needed to find out what was going on. But, he told me that Stone was “fine,” “just behaving like a boy,” “that because I was from a family of five girls and a single mom that I didn’t recognize ‘normal’ boy behavior,” and that I was simply “overly protective.” The doctor was quite dismissive of my concerns and told me not to worry so much. Meanwhile, Stone was getting disciplined at school for not being able to learn the alphabet, for not being able to learn how to read, and for not wanting to participate in group activities. I had noticed at home that Stone had no interest in learning how to read, had problems identifying letters, and did not like having me read to him. He also had what seemed like an obsession with vacuum cleaners. (I would later find out what that was all about.)*
I pressed on with the school, anyway, and asked where I could get Stone tested. I was told by the school’s counselor that there wasn’t a good place for testing for children with L-D in Columbia, SC (where we were living at the time) and just to get him tested when we moved to Gainesville, Florida. We had already made plans to move there.
*Vacuum cleaner obsession: an o.t. told me that many kids on the spectrum really like vacuum cleaners because the vibration stimulates the neurons in their bodies and helps to get them moving. It’s often difficult to get children with autism to be physically active. There’s a lot more research on this….
Stone is now five-years-old. I’ve enrolled him in a Montessori-type school, as was recommended by the counselor at the Catholic school in S.C. During the enrollment process at Jordan Glen, I meet with Stone’s teachers and others at the school. I tell them that I suspect that my child may have a learning disability and possibly “something else” going on. I tell them that I want to get help for Stone, and to please be honest with me in their assessments. I tell them that I realize it may take weeks to get back to me on their observations. Several teachers and the headmaster meet with me after Stone’s first day of school. They tell me that they suspect that there is not just one, but multiple learning disabilities. They also think there is “something else” going on. They advise me to get Stone tested by a clinical psychologist who specializes in L-D and related problems. They tell me that I can go through the public schools to get Stone tested, but that: (1) there’s a long waiting list of about a year for testing, and (2) I will most likely not get an accurate diagnosis because the state of Florida will not want to pay for the services Stone needs. They urge me to get him privately tested, although it national credentials.
The testing sessions with the specialist are long and gruelling (for Stone), but I feel like we are going to get answers and then, I’m going to be able to get the help Stone needs. The psychologist brings in a team of experts to test Stone: a speech therapist, an occupational therapist, a physical therapist, etc. She also tells me that she is going to have to test in a specific way because otherwise Stone’s actual I.Q. will not be accurately reflected.
It takes several weeks to get the test results. The specialist tells me she’ll have a twelve page report for me, and she’ll go over the results.
After meeting with her, I feel so many different things: stunned, relieved, sad, concerned, overwhelmed, alone, and like a knife has just been stuck through my heart. I think back to all the parents of special needs children that I’d interviewed for a TV special for PBS. I’d reported on the pressures that parents with special needs children face and on the different world they and their children live in. I could feel their pain at the time I was interviewing them (before I had children), and I feel it acutely now. At the same time, it’s helpful because I don’t feel so alone in the world. I remember their responses when I asked them how they felt when they got the initial diagnosis for their children. I’m feeling exactly what they were feeling.
The specialist goes through the report with me in a very clinical way. I feel like she’s forgotten that there’s a human being; a mom who loves her son with all her heart, sitting across the table from her. I attempt to stifle my feelings and stay in intellectual mode, so that I can fully understand the results.
On the outside, I appear calm, cool, and rationale. I ask follow-up questions. Inside, I’m hurting and feel like I’m going to start crying and will never stop.
The specialist tells me that Stone has multiple L-D, OCD, ADHD, anxiety, depression, and PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). The PDD-NOS has me stumped. I’d never heard of that one. She explains it to me, but makes no mention of autism.
She goes on to tell me that Stone needs lots of interventions, specialists working with him, and needs to be in a special school, but there isn’t one in Gainesville that will meet his needs. She tells me that life is going to be very difficult for both Stone and for me. She tells me I must advocate for him at every turn.
Meanwhile, Stone’s sister, Jamie, has adjusted beautifully to her private school in Gainesville. She’s in a special “gifted and talented” program. The school is meeting her needs, and she’s made a lot of friends.
For Stone’s best interests, I know we must move from Gainesville. But, for Jamie, I feel a tremendous sense of guilt. I also have a great deal of trepidation, as I’m wondering “what next?” “Where do we go?” “How am I going to afford all this?” “How am I going to get everyone’s needs met?” The world feels like it’s crashing in.
I do a lot of research. I find out about a leading L-D pediatrician/researcher who has started “The All Kinds of Minds” institute in Chapel Hill, North Carolina. I find out more about the program and the specialists in the triangle area (Raleigh, Durham, and Chapel Hill) of N.C. I research schools for Jamie and Stone, and start a job search. We end up moving to Raleigh.
In the intervening time, there are many more specialists that we see. Stone also has sleep problems and some other behavioral issues. We see neurologists, psychiatrists, psychologists, occupational therapists, etc.
Meanwhile, I’ve enrolled Stone in a very good private school for children with L-D. The class ratio is 1:5 (one teacher for every five students). The environment at the school is very nurturing, very supportive, very caring. I feel very good about the school.
There’s a lot of support from the teachers and from other parents. We (the parents) are all in the same boat. The school is excellent, but doesn’t provide o.t., p.t., speech therapy, and all the other interventions our children need even though we are paying a hefty tuition fee.
Every day after school, we all run into each other at various specialists’ offices. That’s how we spend the afternoons. We’re all exhausted, many of us are also working outside the home, many of us have other children to take care of, too, but there’s a tremendous feeling of support and camaraderie. We all feel a sense of community. We are all struggling in different ways, yet we remain hopeful for our children and for each other. We cheer each other on and are compassionate with one another.
On one particular day, our children make a presentation at school before the entire student body. They each get up to read a poem that they’ve written. We all know each child’s histories, and we all have tears of joy in our eyes at the end of the program. This is because when each of our children started the school, not only could they not read, but they could not write. And, our children did not do well in front of groups. So, this day feels monumental for each of us.
In the meantime, Stone still has not yet been diagnosed with autism. However, I am beginning to suspect that he may be on the spectrum because of the other children with autism that I’ve gotten to know at his school.
I hear of an organization called TEACCH (Treatment and Education of Autistic and related Communication Handicapped children) in Chapel Hill, NC that does excellent diagnostic work. I turn to TEACCH for testing for Stone to find out if he does have autism, and if he does, where he is on the spectrum. The clinicians are excellent to work with; they are very kind and nurturing to Stone. (Not all specialists we saw through the years were as compassionate and understanding.)
TEACCH offers a variety of services, in addition to diagnostic work. They also know of the best referrals in the triangle area, and most of them are in Chapel Hill or Durham. Additionally, TEACCH offers seminars for parents and a great deal of support.
In the meantime, Stone’s private school has gotten a new headmaster. Nearly three quarters of the teachers resign, and parents start pulling their children out of the school. What had been a nurturing environment where our children were once thriving has turned into a punitive, harsh environment filled with unrealistic expectations of the children. I know that I need to make a change for Stone.
So, we move to Chapel Hill (about an hour’s drive with traffic from where we were living in Raleigh). I make the false assumption that if there are so many great services such as TEACCH offered there must also be very good schools which work with children with autism. We move there, as do dozens and dozens of other parents from all over the country, expecting the very same: good schools will go with excellent services.
It was an amazing community to live in. But, the problem we all struggled with was the schools. There was a total disconnect there. We were all working hard to improve the schools for our children and others, but it was like another full-time job in itself. During that time, the schools were not very responsive to our children’s needs. Many parents made the decision to leave Chapel Hill for that very reason, or ended up home schooling their children.
Anne: Do you feel confident that the diagnosis was accurate?
Elizabeth: Yes, once we finally reached it! But, what a journey that was….
I do want to add that two psychologists along the way to a diagnosis suggested that I put Stone in an institution. The first one said that if I were a truly caring parent, looking out for Stone’s best interests that I would put him in an institution where he could be better served. The one she suggested was located over a thousand miles from where we lived. I learned an invaluable lesson from this expert/psychologist: they aren’t always right and you need to follow your heart and trust your own instincts. You know what is best for your child, and no one knows your child as well as you.
This particular psychologist told me that “she could never deal with such a multitude of problems.” She did not have any children. I later realized she was projecting onto me. I learned to watch out for that type of personality/behavior and to take it with a huge grain of salt. I told her that I’d never place my son in an institution. I most certainly did not feel it was in his best interests, and if it was tough for me to handle as a single parent, then so be it. To me, it felt like she was asking me to put my child up for adoption. It was all I could do to make it out of her office. I immediately burst into tears as soon as I hit the elevator, and sobbed all the way home. What she had said to me was unexpected, insensitive, and seemed cruel.
Anne: When Joey was diagnosed, very few people had heard of autism. Being in a new town coupled with an autistic child, I found it easier to isolate myself. Did you seek support and if so, where did you find it?
Elizabeth: I think it is so easy to isolate yourself when your child is first diagnosed, or at least it was when our children were diagnosed. There was not as much support, understanding, or resources at that time.
First of all, as a mom, you are going through a lot emotionally and have so much to process. You have a great deal of responsibility on your shoulders, and most people don’t have a clue, and there are some that don’t bother to care about what you are going through. Also, when your child is first diagnosed, the learning curve is steep. There is so much to learn about autism; like where your child is on the spectrum and what services he needs, and so much more. Additionally, you quickly learn the aphorism is true: “You meet one child with autism and you’ve met one child with autism.” It’s not a one size fits all diagnosis, and the interventions needed for each individual child vary widely.
But, I did feel very lonely and isolated. Fortunately, when we moved to Chapel Hill, I became a part of a whole “auti community,” as it was called. We’d go to parks and playgrounds, and just about everyone had a child or grandchild with autism. We were all supportive of each other, and exchanged helpful information about specialists, coping skills (for our children and for us), and schools.
I joined a Thursday night runners’ group of 200 women; many with children or grandchildren with autism. More support there. I then join a group of eight “auti moms” who meet for dinner once a month. We are a diverse group from all over the U.S.; some of us married, some not, with our children being all over the spectrum.
The first night we meet, I asked each mom about their reaction when they finally got the diagnosis for their child. Most of our responses were very much the same. We had all decided to get the best interventions possible for our children and to advocate for them at every turn. We were there for each other. We’d called one another for advice—to vent—or to share a joyful moment.
Anne: What role did Stone’s father play in Stone’s life? Are you married?
Elizabeth: It’s so sad for me to answer this question. It still hurts to this day. Stone’s father and I were divorced when he was three. Stone’s father has chosen not to play any role in his life. He will not even acknowledge that Stone has autism. I think Stone’s father has missed out on more than he’ll ever know. He’s missed knowing his son, who is an extraordinary human being. He’s missed out on all the best that life has to offer. And, Stone has missed out on having a dad in his life.
But, at the same time, I remind myself that it’s probably better for Stone to have not been around a person who was angry most of the time, who displayed narcissistic behavior, and had his own unresolved issues. In a perfect world, who would not want a caring, compassionate father involved in their child’s life?
Being a mom to a child with autism or any special needs child is an exhausting process; even more so when you are a single mom and when you are trying to balance everything, including the needs of your other child (not to mention work and all the other responsibilities we all have in our lives). I was a single mom for thirteen years. I never thought I would re-marry. And, then life changed for me a year ago. I met a wonderful man who loves and cares about my children. We are now married. He considers Stone his son, and Jamie his daughter. He would do anything in the world for them.
When I first told Chuck about Stone, he wanted to learn more. He wanted to hear all about my experiences, our experiences as a family, and all about Stone. He wanted to know what it was like for Jamie having a sibling with autism. He also wanted a recommended reading list. He has and continues to be tremendously supportive, and it makes all the difference.
Elizabeth Jackson is an American journalist, writer, and advocate currently living in Canada. She is married to Chuck Jackson and has two children, Jamie and Stone.