Hello, everyone. Since we had our last post, the new autism numbers were released. 1 in 54 boys in this country now have autism, but what the media fails to report, is that this figure represents 8 year olds from 2008. Not today’s children in 2012.
My name is Mary Therriault and this is the story of my son Logan. They are my heart soul and the purpose in everything I do.
I knew Logan was going to be a boy from the minute I found out I was pregnant. I just knew. Logan was really our second child. My husband, Al and I lost our daughter Lauren at 22 weeks into my pregnancy. So it was like walking on egg shells waiting for my son to be born. I was considered high-risk and had a cerclage put in at 13 weeks. Otherwise my pregnancy was pretty average.
Logan was born on Thursday, March 25, 2004. On the Tuesday before, I went to the hospital experiencing contractions. They never moved me beyond three centimeters. My husband and I stayed in the hospital for hours hoping this was going to be it, but I was sent home. Logan finally arrived at 12:30 pm on the 25th. His birth took a long time. I had an epidural that only worked on the right side of my body. He decided to hang out in my birth canal for what seemed forever. The nurse could see his head and play with his hair, but then, he’d shoot back up. Like he was playing peek-a-boo. By the time he started crying, both he and I had high fevers. I was put on anti-biotics and told not to breast feed until my fever was gone. His apgar scores were normal to almost perfect. As I cared for him in the hospital for 48 hours, three things were clear, he didn’t sleep at night, he wasn’t breast feeding, and he wasn’t pooping. I was told, not to worry, it was “normal”. On the day we were discharged from the hospital, he developed jaundice. It was mild and other than a follow up with the doctor no treatment was given. I was also sent home giving him supplemental formula feeding along with trying to breast feed him. No, this doesn’t work well. It took him seven days to poop. I ended up pumping my milk for almost three months and adding it to his formula. It took him almost six months to sleep at night.
Logan was the happiest baby you could ever meet. Not only was he happy but he was charismatic. Complete strangers were drawn to him. Not just the way people are drawn to cute babies but people would come over and play with him. Waitresses at restaurants would hang out by him for an entire meal. I had to be mean and ask them to leave while we ate. And Logan loved them. He was drawn to any female with a bright smile. I never had trouble leaving him with a girlfriend while I went to a doctor’s appointment or with the childcare people at the gym. He was always happy. He hit most of his developmental milestones. The only thing he didn’t do was crawl. He preferred to be in a walker running around the house or scooting along the couch by himself. At 11 months, he was walking, at 14 months he was singing the alphabet and identifying letters and numbers. At 15 months he continued to gain new words. He talked mainly in one word utterances. By 18 months all this slowed down, if not stopped. He would gain a word and use it for a week, then it would disappear, never to return again. I went to his doctor for a routine check-up. He told me it was fine and because Logan was a boy, sometimes they take longer to talk. I didn’t think much about it. This was also do to the fact that I was waiting for Logan’s brother, Luke to be born any minute. Logan continued to struggle with words and at his two-year check up, I got a referral for Early Intervention Services.
Early Intervention or EI, came to evaluate Logan in several areas. Speech, occupational therapy, developmental, and social skills were found to be delayed more than 30 percent. Some as much as 75 percent. I was shocked and felt so guilty that I hadn’t acted sooner. We knew there was a speech issue but now there was a host of problems. My husband was very supportive but also felt that it was the evaluators’ job to find areas of problem. Even if it wasn’t a big problem. Logan received services in speech, occupational, and developmental therapies form 28-36 months.
As far as Logan’s behavior went, there were some odd things but some of it seemed like he was just being a two year old. Logan put everything in his mouth but while most toddlers mouth things, he was actually ingesting them. Dirt, Windex, anything with a rubber or foam texture, were among his favorites. He never sat in one place. Logan would stand while watching television and would walk around the house while scripting his favorite shows. He was also starting to become a white food junkie. This would only get worse. Logan loved crackers, cookies, breads, cakes, cereal, and dairy products. Milk, cheese, ice cream, yogurt, pudding, and more milk and cheese. It was as though he couldn’t get enough. It would later make sense and add another piece to the puzzle.
EI services for us were very good. One benefit was that it was in our home. Having a four month old baby, I didn’t want to drag both kids to appointments and hang out in waiting rooms. I sort of wish I had. Partially because Logan would have done better in a clinical setting to separate the home space from work space, and I would later learn that in those waiting rooms are some very dedicated parents from whom I would get a wealth of information. During those seven months of EI services is when we first came fact to face with the word autism.
Logan’s OT was very good with him. She was one of the best Ots we had. However, when she brought up autism and Logan it didn’t come with much support or anything else. It was said, “I really think we are dealing with autism here, go see a developmental pediatrician”. I remember thinking, “What the hell is a developmental pediatrician”? I did the only thing I knew how to do, took him to his own pediatrician who, we like and trusted on every level. I feel that his pediatrician did the only thing he could do and did what he believed was true. Looking back now, that doctor’s appointment caused us to lose a lot of developmental time with Logan and I should have pushed for more answers. The doctor told us that, “Everyone wants to think they’ve found a case of autism. It’s the in thing right now. Even if Logan has autism it won’t change the course of treatment he’s on now. You’ll still do therapy for him”. Boy was he wrong. If I had good information and guidance back in 2006, it would have very much changed the course of treatment for Logan.
Logan transferred out of EI and into the school district right after spring break. I found the school team to be very caring and good with Logan. School was an adjustment for him but the routine was good for him and the two and a half hour break was much needed for me. At every meeting, I was told that Logan was making progress and he was doing fairly well. All until the November parent-teacher conference before he turned five. He was set to go to kindergarten the following August. Every time I had asked if that was still the plan, I was told yes. Logan would do an integrated readiness program that was a five and a half hour program. Kindergarten in the morning and special educations in the afternoon. There he would get all of his services and a review of what he learned in the morning. This program was housed in his neighborhood school, where he was doing early childhood. However, at the conference I was told, the school just couldn’t handle Logan. They didn’t have the resources to effectively teach him. The option was to go the special education cooperative. This coop taught students from five area districts. The classrooms were held in different buildings among the districts. They had an autism program.
Logan’s early childhood teacher told me to visit as many programs as I could and check-in with Little Friends, as they seemed to be the local experts in the autism education area. But, when I started to inquire about visiting programs with the school administration, I was allowed to visit two classrooms. Both were in the Coop. One was the autism program that Logan ended up attending and one was a cross-categorical classroom housed in one of our district’s buildings. When my husband and I went to Logan’s principal to inquire about visits to private school, we were met with, “Parents really don’t shop around for programs”. I replied with, “well they certainly should”. After a lot of pushing and pulling between ourselves and the school district, and many tear-filled nights for me, Logan ended up at a Coop program. It was housed 40 minutes away by bus. He had the one of the best teachers I have ever met. She understood Logan. She loved his goofy sense of humor and knew what songs he was singing, even the ones from Fraggle Rock. Don’t get me wrong, it was a battle at first. Logan was not prepared to be in school, let alone all day kindergarten. His early childhood career, taught him nothing. He wasn’t even able to sit at a table and work for three-four minutes at a time. In the end, Logan spent two years with this wonderful woman and her team. He showed the most growth I had ever seen during this period. He continues to be with the coop in a new building with many of the same kids he started with. His teacher is very different than the previous one but he seems to do well with her as well.
Through out all this educational stuff or crap as I like to call it, we continued with traditional therapies as much as possible. However, with a full day of school and almost 90 minute commuting, we cut back on private therapy. We started pursuing biomedical intervention. At first, I wasn’t so sure about these types of therapies but then I realized that Logan wasn’t getting very good nutrition and thought a multi-vitamin couldn’t hurt. Within two weeks on a multi-vitamin, I saw Logan improve. It wasn’t anything specific but he seemed more alert. That’s when I started reading and researching and never stopped.
When Logan was four, almost five, while we were battling with the school for his kindergarten placement, I decided to seek a formal diagnosis. Through a referral from the pediatrician we went to a pediatric neurologist. He only spent about seven minutes with us. Then he said, “I do see autism here”. By this time, we already knew that and were coming to an understanding that it was what Logan has but not who Logan is. I didn’t particularly care for his bedside manner but he gave us what we needed. A diagnosis to get insurance coverage and additional services from the school. About a year and a half later, we took Logan to the University of Illinois to a developmental psychologist specializing in autism. He was again diagnosed with autism but this time we had reports and suggestions to support his diagnosis.
My husband likes to tell me that a lot of knowledge can be a dangerous thing. I do agree that it can lead me to being obsessive and overwhelmed. However, I don’t think I will ever have enough knowledge about Logan and his autism. Soon after I put Logan on the vitamin, I met a mom who’s son also had autism. His diagnosis was PDD-Nos. We started talking and never stopped. She shared so much information with me and I will always be grateful. As a result, I put Logan on the gluten-free, casein-free diet. I had known about this diet for at least a year but had all kinds of reasons why I shouldn’t put Logan on it. I discussed it with my husband, family, and friends. They all gave reasons why the diet sounded crazy. One day, Al came home from work and said, he met a guy whose son was on a diet and it did wonders for him. We both decided to try it. Again, within two to three weeks on going on the diet, we saw changes. Logan was much more alert. He would look at us when we called his name. He wanted to cuddle more and more, the horrible eczema rash on the back of his knees disappeared. His speech improved a little. His attention span was longer. Though he still preferred and still does prefer DVDs, he would even play with a toy. We have kept Logan on this now for three years and will most likely continue with it as long as we can. We do let him have special treats but only when planned on.
The next step in our discovery was the holistic health practioners or DAN doctors. I admit I was skeptical about the whole DAN protocol. But the more I researched I found that most of these doctors were in mainstream medicine but left after having their own children diagnosed. Frustrated by the lack of information and adequate care for their kids, they branched out to provide treatment that is scientifically based and used by kids that have spectrum disorders. It took us a while to find what worked for us. Just as it takes a while to find the right doctor for a typical child or family. We are working with Doctor Brown in WI. Logan has been diagnosed with a number of medical issues. I don’t think his body has ever worked correctly and I believe that he is in constant discomfort. Because of his easy-going personality and the fact that he had never felt anything else, he is often able to cope with his misery. He comforts himself with his stimming and echoing behaviors.
Medically, Logan has a digestive system that is completely out of whack. Too much bad bacteria and yeast, not enough good bacteria. Swelling in his intestines and brain. Levels of vitamins and minerals that are super low even with his supplements. We discovered he has allergies to many things. This winter he also picked up a bacterial infection that he never showed any signs of. He continues to battle constipation on a regular basis. He still wants to eat non-food items.
However, we have also had some big improvements. He learned to urinate on the toilet. He will some times have his bowel movements on the toilet as well. He is verbal enough to ask for what he needs. He plays with his brother and he still loves to cuddle with his mom and dad. Every once in a while he will sit and listen to a story or watch TV. But he stills prefer to bounce around. His computer skills went through the roof. And he is learning to type to find his favorite shows on You Tube. For Logan, it’s all about the motivation. He also taught himself how to swim under water. And every once in a while he will go out to eat with us and sit for the entire meal. This was a huge victory!
We will continue biomedical care and start looking into some other medical issues, mitochondrial disorders, cerebral follate in the brain. I am also looking into neuro-feed back therapy that I believe will someday become a more mainstream therapy.
As far as other interventions and therapies go, we are doing equine therapy. Logan loves the horses and does well with them. It is not covered by insurance so we try to save money from the tax return to use on this. This is also the first year that we aren’t sending him to summer school. He will do camp through special recreation instead. Another big expense but I think it will let Logan have a better summer.
Autism has taken a huge toll on our entire family. There are times when my husband and I don’t agree on the treatment or programs to out Logan on. Our bank account has dwindled to nothing. Our credit scores plummet as we make choices to pay for Logan’s treatments or keep with other debts. The emotional roller coaster is the hardest to bear. I ride it daily being thrown between the highs of what Logan is able to do and the lows of worrying about what he can’t do. I get sick to my stomach wondering who will care for him if anything happened to us. I worry that we don’t have enough money to care for him as an adult. I am concerned about the quality of his future.
I still regret past decisions, and the present is so busy, I wonder what happened to enjoying life. I spend so many hours vigilantly monitoring his education and therapy. Countless hours are spent deciphering insurance policies and medical billing code. I refer to my tax guide book so often, it is on my night stand. Then the added “fun” of rushing home to mix supplements in a way that makes them palatable enough for Logan to drink. His nose is better than a blood hound’s at sensing something is different. I try to slow down and I try to remember I can’t do it all. My parents have been a huge help for us. They often help pay for therapy and equipment we otherwise couldn’t afford. My mom cuts out newspaper articles on anything autism and sends them along to me.
I no longer worry about the diagnosis or what to call what Logan has. I continue to read all I can on the disease. I got to conferences and log on to chat groups. I seek out other parents to share ideas with. This is as much about my growth as a parent and a person as it is about learning about autism.
I try to share the knowledge I have gained with other mothers new to this battle. They often don’t want to hear much of it. But I know I was once the same way. We can’t wrap up our experiences and give them as a gift to someone else. This kind of knowledge is something we often have to find on our own. I don’t know where this journey will take Logan or us but I know that as long as I am here, I will continue to fight and speak for my son.
Thank you Mary for sharing your family’s story with us. We have more moms lined up, but I want to publish as many of these as possible.
Please read the other story in our series: