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Being the mother of a child with any disability is immensely difficult. It's hard to describe or even find the right words for all the emotions that surfaced. It overwhelmed me. In almost every article that I've ever come across, there is rarely a mention of what goes on behind the scenes of an autistic child's family, especially with regard to the mothers – first, for what we go through to bring these children into the world, and second, for what we do to give them the best possible life we can.
I want to let my mom know how grateful I am for her and what she went through having my sister, my brothers, and me. She sacrificed so much for us. I appreciate how my parents raised me, how they stuck by me and gave me love and support through all of the trials and tribulations I went through in my young life. Thank you.
Through genetics, I was lucky enough to receive an incredibly strong will and ability to persevere. Thanks, Mom! However, I also learned how to “hyper” stress about things. Thanks, Mom! :)
As I said, dealing with Jamie's autism was overwhelming. Problems with his breathing meant numerous trips (twenty-two) to the emergency room, most of the time in the middle of the night. So, in addition to not sleeping, I was overly stressed about my son's life. Jamie did not sleep through the night for more than four years. His internal problems caused him to wake numerous times screaming each night. After he started sleeping through the night, I still couldn't sleep because I would wake up several times each night with my heart pounding, waiting for something to happen. My adrenal glands became completely overworked and after several years of this, I developed adrenal fatigue. Even after time passed, I continued to feel really bad. It was difficult to explain to the doctors how I felt. At times it was so bad I felt like part of me was dying.
With my health disintegrating, I had to find help for me. This came only after I felt like Jamie was well on his way to recovery. I went from one doctor to the next getting blood tests, checking to see if I had some weird disease. I went to an endocrinologist in Denver and was told that I was just depressed. I tried to explain that I didn't feel depressed, but I was given a prescription for an antidepressant anyway. An internist said the same thing and also wanted to prescribe an antidepressant.
Finally, I went to a psychiatrist and told her the story. She said she thought I was anxious and needed a drug to calm me down, maybe a low dose antidepressant. I thought , Well, I guess I'll try one and see what it does. It was called “Serzone” or “Nefazodon.” ( Sale of this drug has been discontinued.) After taking it I thought I was going to jump out of my skin. I was dizzy and more anxious. It was terrible. I never took it again.
When we were working with Bill Cunningham, I told him about my experience. He said he knew someone who could figure out what was wrong with me -- Dr. Gary Klepper. At my first appointment, he did some initial tests. When he came back into the room and sat down to go over the test results with me, I asked him if he thought I was depressed or crazy. He explained clearly that I was neither and showed me that my body was just very tired and burned out. Dr. Klepper confirmed that I had adrenal fatigue and low cortisol levels. He suggested that we start slowly to restore my health by rebuilding my body from the cellular level through acupuncture, supplements, cranial sacral therapy, and homeopathies. It took awhile, but after about six months, I was feeling really good. I will always be grateful to him for what he's done for my family and for me.
What I learned is that it's hard to find the best doctors who won't just tell you to take an antidepressant. We need doctors to look deeper for answers. If we start taking drugs, we take one, then two, then next thing you know we're taking one drug for another drug. Pretty soon we're drug junkies. Sometimes it's just a matter of needing a good night's sleep, or a date night with your husband, or dinner out with a friend, or maybe you just need exercise. I know all that can help because it worked for me -- along with a doctor who prescribed things that were beneficial to the body.
Finding doctors who knew about autism and how to help me was very difficult. Most doctors had the attitude that you were unlucky and there was nothing you could do about it. This led me to putting a great deal of effort, practically every waking moment, into finding doctors who understood and could do something to help us. It was very frustrating running into so many roadblocks at a time when I didn't need any more. Not many people or doctors shared my same attitude about the ability to change what afflicted my son. I wanted people on my team who felt the same way I did and truly believed that I could get Jamie back. I really learned to listen to my instincts at that time because it meant sometimes not listening to well-educated and well-intentioned people who didn't share my same vision or same beliefs about my ability to help my son recover.
This time was also very difficult financially for our family. We spent thousands and thousands of dollars finding the right people and the right places to help Jamie. No place was too far to travel. No treatment was too costly not to consider. Most of us just don't talk about this to our friends or family, but it can be a huge burden and difficult to survive. To use our medical insurance, the doctors had to be “in the network.” As you might expect, about 95% were “out-of-network” so unfortunately we didn't get a lot of coverage from our insurance provider. For example, our insurance covered thirty sessions of speech therapy and occupational therapy combined…per year! Just one session per week still meant that our insurance covered only ten months a year. With Jamie, we did therapy four to five days per week, so you can imagine how quickly the costs began to accumulate. Fortunately, our insurance did cover hospitalization and pediatrician appointments. |
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On top of your financial burden, can your marriage survive? The focus of your world completely shifts and the only important thing becomes getting your child well. Our marriage took a back seat to everything -- dates, alone time, and romance. If we hadn't made the decision to seek out a marriage counselor we both liked and could work with, our marriage wouldn't have survived. James and I have worked very hard over the past five years with our counselor, Lynn Heitler, rediscovering the love and intimacy of our relationship. She has been a tremendous help in keeping our marriage together. She is amazing.
This is a small picture of what we've been through. I wanted to write a little about myself because I think many families can relate to our story and perhaps it will give other families hope that they can make it through these extraordinary events.
In my twenties, I thought about having children, but I was too busy with my career. When I was around children, I felt like I didn't do very well with them, nor did I think they liked me. I honestly didn't think I would be very good at being a mom.
When I met James, I started a completely different career. We worked very hard to accomplish our goals for a business. During the five years before Jack and Jamie were born I lost three pregnancies, and at that point I thought I would never have children. I believed fate was telling me I wouldn't be a good mom. Then I discovered Dr. William Schoolcraft, a reproductive specialist, who was instrumental in helping James and I conceive our boys. I never imagined that I would have twins, let alone know how to take care of two babies at once. There better be a book , I thought. Once Jack and Jamie were born, my motherly instincts kicked in. That lioness that everyone talks about being within mothers really did come out in me.
Although this has been one of the most difficult times in my life, I have grown more in the past seven years than I had in my entire life. And after everything I went through with Jamie, I still wanted one more child. Dr. Klepper must have given me the wrong diagnosis. I was crazy! Again, thanks to Dr. William Schoolcraft, I was blessed with another set of twins, girls this time. In preparation for that pregnancy, I worked with Dr. Terry Grossman to do a mercury detoxification through use of glutathione and DMPS. I knew I didn't want to pass on any mercury toxicity to any future children I would have.
Wow! I thought my experience with Jamie was hard. During the pregnancy with my daughters, I had a placental tear complicated by placenta previa that lasted the entire seven months I carried the girls. I was on complete bed rest for seven months. What a nightmare this was for me. I couldn't help but feel ‘why me?' After everything I'd already been through with Jack and Jamie, I thought I'd already “paid my dues.”
The story has a happy ending… or better said, a happy beginning. At thirty weeks, ten weeks early, my beautiful daughters, Sofia and Gabriella, were born. They remained in the NICU for ten weeks while I visited every day with Jack, Jamie, and James. It filled my heart with joy to see Jack and Jamie so proud to be big brothers. Jamie seemed to handle his new role as older brother very well. We were all excited to bring them home. Jamie and Jack are very kind and loving to their sisters and they help Mom whenever they can.
Life has been quite incredible and I am still recovering. I eat healthy and do the best I can to speed up my recovery. Everyday I get up and make a choice about how I will feel today. Everyday I am completely filled with love and gratitude for my children and husband. I can't help but giggle and laugh out loud everyday realizing just how lucky I am.
I don't want to overlook my husband and all of the other husbands and fathers out there. We all take different roles in our marriages and that's a good thing. My husband, James, has always been incredibly supportive in everything I chose to do. He may have thought I was a little “out there” at times, but he still stood by my side. I will never forget what he's gone through with me. Together we made it. |
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