The Diagnosis

This is a long one, but it seems like a logical first post…

As many of you know, we have had concerns about Maya since she was 2 years old, mainly concerning speech and language and her anger and frustration. She qualified for early intervention when she was 2 and a half and then for developmental preschool when she was three. Since she is going to be in kindergarten next year, they began doing a "full evaluation" of Maya in December to determine if she would be eligible for special services next year, and if so, which ones. This included an evaluation and checklist from her speech teacher, an evaluation from the psychologist and checklists from the teacher and I. We knew that we would receive the results of the evaluation at a meeting that was scheduled for the end of January. Anyway, the weekend before as I knew the meeting where I would hear the results of the evaluation loomed, I was increasingly tense, wanting to know more, but not really wanting to know at the same time.

The Monday before the meeting I left school to run an errand at lunch time and got a call from the school psychologist. She said she had the results of the evaluation, and wanted to let me know before the meeting on Wednesday that Maya scored in the autistic range. I don't really remember what all she said after that, other than letting me know that she wanted me to know before the meeting so that I didn't first hear about it in a room full of people. The emotions that I felt at that point were overpowering. I guess the most upsetting thing for me was the permanence of the word "autism". I have always heard that there is no cure for autism, and while the increase in autism cases is staggering, no one knows what causes it. I talked on the phone to Rick who helped me to calm down a bit.

Then, I drove back to school and called our school's Student Services Coordinator (like a counselor) who had already come with me to one of Maya's other meetings and was planning on attending the Wednesday meeting also. Just a little side note about her, this is her first year at my school. For many years she has taught and coordinated services at Chandler's Developmental Preschool, so she knows all about it. She offered to come to the meetings for Maya because as of early January, the plan was that Maya would go to Humphrey (where we both work) next year. Also, she has a 4 year old daughter who was born very prematurely, so she fully understands what it means to worry so much for your child. She has been wonderful for our school and wonderful for me personally, a really solid support. So I called her when I got back to work. I was a total mess, and looked like I had been crying for hours, and was scheduled to have kindergartners in the lab in 25 minutes. So our wonderful Student Services Coordinator came down to the computer lab, and said the most calming things to me and really made me feel 10 times better. She explained the difference between an educational diagnosis and a medical diagnosis. There are a limited number of educational diagnoses and they need to fit each child under the best one to qualify him or her for the right types of services. She also explained that while there is no cure for autism, a lot of kids who are labeled as autistic in the school system make lots of progress and then no longer have the label a few years down the road. Just to hear from someone that it may not necessarily be a permanent thing felt calming. She also emphasized that she was the same person who she was the day before. Nothing had changed about Maya as a result of the evaluation. Amazingly, I pulled it together for my afternoon classes.

Being a gatherer of knowledge, I immediately ordered 5 of the best-reviewed books that seemed to fit my situation on Amazon. I still wasn't looking forward to the meeting on Wednesday, but felt calmer knowing that I had already heard the results and I wasn't going to be blindsided by unexpected news. Looking back, I realized that I had always been very nervous about all meetings and teacher conferences regarding Maya, because I was always fearful that they would say they thought it was something more serious. I was relieved every time I left when no big concerns were brought up. Now the biggest worry that I had pushed to the back of my mind for the past two years had been brought ruthlessly and instantaneously to the forefront.

The Wednesday meeting was in a conference room with me, my school's Student Services Coordinator (even though she knew then that it was very unlikely Maya would be attending her school next year), Maya's teacher (wonderful), Maya's speech pathologist (also wonderful), the school psychologist (she coordinates all of the evaluations), the self-contained classroom lead teacher (Maya's placement for next year) and a regular kindergarten teacher (bless her heart, they always have to have a regular education teacher sit in on special education meetings even if the child will never be in his/her class. I've done that many times...)

The meeting lasted 2 hours and was basically a detailed description of all of my daughter’s deficiencies. Everyone was very nice, but the meeting was taking place because of all of the things she can’t do, not because of all of the things she can do. In spite of everyone’s kindness, it is very unnerving to hear detailed accounts of all of your own child’s weaknesses. Every number, score, percentage and bit of anecdotal information broke my heart a little bit more. I felt physical pain while I was sitting there. I can’t imagine walking into a meeting like that not knowing the outcome ahead of time. As I sat there, I was grateful for the strength to hold it together in front of the 6 people who were sitting with me at the conference table. I knew that would not have been possible without that Monday phone call from the psychologist. It was a very difficult meeting, the most difficult of my life so far, but I left knowing that all of the people in the room were good people who had/have Maya’s best interests at heart.

As I started to reflect back on the past few years, there were a number of “clues” that I brushed to the side or excused for one reason or another. The mind is a very powerful thing and when a person wants to convince him or herself that everything is going to be just fine, all kinds of evidence can be found to support that idea. All other evidence can be discredited or pushed aside.

The next two weeks or so were a blur. I read hundreds and hundreds of pages out of many books into the late hours of the night. I searched for and read all kinds of information on the internet. I couldn’t sleep. My mind was going a hundred miles an hour around the clock. When sleep eventually came, I woke in the night many times and lay in my bed, unable to stop crying, thinking and worrying about what the future held. I alternated between feeling slightly relieved that some of her behaviors could now be explained, and being completely and utterly devastated. The feeling that I wanted to physically shield her from the rest of the world, and not let anyone look at her or judge her or evaluate her became more intense. Although we had made an effort not to talk specifically in front of the kids, we realized that the stress was clearly showing when Shayne said to me one day, “Mom, there’s nothing weird about Maya.” The two of them have always been like two peas in a pod.

Then, as I read, and as a few weeks passed, the pain dulled a bit, and I was able to look at the information from a slightly less emotional perspective. It was truly fascinating. I began to be able to see things from her perspective. I felt an overpowering sense of gratitude to the families and the doctors who had dealt with autism long before most people even knew what it was. There is a huge body of research and knowledge out there that was unavailable even 10 years ago. The enduring energy, passion and sacrifice of these doctors and families have given us so much more knowledge than has ever been available about autism spectrum disorders. This better understanding has led to many different approaches to treating autism that have shown remarkable results.

To summarize, it isn’t a hopeless condition bound to stay the same. Some kids do recover. Some kids show huge improvements and go on to lead normal, productive lives. Some kids don’t improve as much, but their families and loved ones can learn a great deal about how they think, feel and process sensory information. There are so many factors and each child on the spectrum is so unique.

Our next step was to take Maya to a developmental pediatrician. The doctor we took her to is also a licensed psychologist. He spent about 90 minutes with us. First he spent time with Maya and I, then just me, then just Rick. His conclusion at the end was basically inconclusive. He said he wasn’t totally convinced she was autistic. He said that clearly she has some autistic traits, but that anyone can have autistic traits and not be autistic. I asked, “Can she test as being autistic now and then not being autistic in a year or two?” “Oh sure,” he said. This gave me a huge surge of energy and some much-needed optimism. Then, almost immeadiately I felt the requisite guilt for parents who are not told anything hopeful. He said since he wasn’t sure, he would go ahead and say that she is autistic so that she can get speech and occupational therapy through the Department of Developmental Disabilities. He said either way there is “a lot of hard work to be done”. There is a lot more that has happened since that doctor’s visit in February but I will post those things separately. This is getting pretty long!

I want to close this post by expressing how truly grateful I feel for having such a connected child who is good at so many things. In fact, I feel so fortunate that it upsets me to think of other families have far more difficult situations. With all the research and case studies that I have read, I realize how truly detached and unfeeling some kids with autism can seem. Maya has always had a great connection with us. She loves our attention, she plays with us and jokes and gives hugs and kisses and eye contact…so many things that mothers of children who are severely autistic do not get. And I know any of them would give anything to have a day where their child wanted to play chase or gave them a great belly laugh while being tickled or said the names of family members or looked into their eyes. We get all of those things and we do not take them for granted. I read accounts of these families with tears in my eyes, in pain, both for the children who are not usually understood and cannot communicate and for the families who feel the pain of not connecting and watching their child walk through life fearful and confused. Many autistic children never speak, or tantrum for hours, every day, or can never go out of the house without risking huge meltdowns. Many of them feel sensory overload and physical pain from things like bright lights and loud noises. Many, many families have far more difficult challenges than what we face.

The other thing that I thank God for every day is that she is in reasonably good health. Most if not all kids with autism have underlying physical problems, which Maya has had and continues to have sometimes. But, overall, she is happy and in reasonably good health. The reason it took me so long to share this is because I wasn’t sure quite how to do it or when. Then there was finding the time to set it up and write it down. The time feels right now. I will post more about what we are doing to treat Maya and how it is going soon. Thanks for reading :)