My life leading up to Owen’s diagnosis was a series of events. Life seemed to just happen to me; most of the time it felt as though I was just along for the ride. I didn’t put much thought into the why’s or how’s of life. I took for granted that the next step would be mapped out for me. It’s not that I’ve always had an easy life its just that I didn’t look too deeply into the meaning of things. I was a rule follower and people pleaser. I figured out what kind of person you wanted me to be and I would do my best to be that person for you. I was in no way perfect but I tried my hardest not to let anyone see the cracks under the surface. I followed directions and didn’t ask too many questions. Honestly, looking back, life was a lot easier living that way but less meaningful.
I accidentally got pregnant with Owen six months after meeting my husband, Jeff. Neither of us had a good track record with dating. The fact that we both committed to this relationship so deeply is a miracle. Jeff moved in the night I told him I was pregnant mostly because I was feeling vulnerable. The plan was to get married after the baby was born but once those pregnancy hormones kicked in it was suddenly very important to me that our baby be born with the same last name. So at eight months pregnant I squished myself into a dress, waddled down the aisle and married my best friend (I just didn’t know it then).
Once born, Owen followed all of the newborn baby rules. At least those I read about in the What to Expect the First Year book. Things were going so well with Owen that shortly after he turned one we decided to try for a second child. Two months later I became pregnant with Eli.
Life just seemed to fall into place for me. I wanted something, would put in a small amount of effort and got it. I thought that’s how life worked. Until tiny cracks began to show in my perfect world. Owen was beginning to stray from the rule book. Then I brought Eli home from the hospital and two months later Owen was diagnosed with autism. He had such a severe reaction to his little brother’s cries that we could not keep them together for more than a couple of hours at a time. The strain of having a newborn, a toddler newly diagnosed with autism and the inability to function as a family began to take a toll on our happy marriage. Life as I knew it began to crumble. See Life After Autism.
The year following Owen’s diagnosis and Eli’s birth was a difficult year for our family. Once the fog cleared and we came up for air, we found that we had come through it stronger, wiser, and more confident. The world looked different to me. People looked and acted differently. I started asking why to things that I would have taken for granted in the past. Initially I thought the world had changed but I soon realized that I was the one that had changed.
After Owen was diagnosed troops of therapists started coming into my home. I felt confident that these smart folks were going to fix Owen. I soon realized that although smart, caring and good at their jobs they weren’t parents of an autistic child. There were some things that I intuitively knew how to handle better because I was living autism 24/7. Of course, I didn’t speak up because I felt intimidated by their education and wanted them to like me. So I would continue to try their suggestions, some worked well but others didn’t. Each time they made a suggestion that didn’t sit right with me, I would go against my instincts and follow through with their suggestions anyway. Very often it would fail miserably. Little by little I learned to trust my instincts and began to find my voice.
I began asking for specific services or speaking up when I didn’t agree with their suggestions. I was far from perfect. I was like a toddler learning to walk. Some days I would take big steps and assert myself too much, coming off as pushy. Other days I’d continue to crawl allowing them to walk all over me because I was afraid to rock the boat. Instead of discussing things that upset me in person I would send long emails outlining my concerns. I needed to experience these growing pains in order to gain confidence in myself. I had to grow a thicker skin in order to shrug off negative comments and accept that not everyone will like me or agree with me. Not a very comfortable lesson but a necessary one.
When Early Intervention ended and we transitioned to the Intermediary Unit (IU) it was an abrupt change. Early Intervention came into our home and worked very closely with Owen and I. The IU services are provided outside of the home in order to prepare the child for preschool and other life skills. I was expected to drop him off at his therapy appointments and wait for him in the car. At our first meeting it felt like they were saying, “You’ve done a great job Mom, we’ll take it from here.” I felt that familiar, uneasy sensation in my stomach and spoke up. I asked to sit in on his speech therapy sessions. I wanted to meet his therapist and see how she’d work with my son as well as to continue learning myself. I was fortunate because his speech therapist was fantastic and welcomed me to join in her sessions anytime. For the first 6 months I went to every speech therapy appointment with him.
Next was the meeting to discuss preschool. We planned to enroll him in a preschool class for autistic children. The class was held in the middle of the day during Owen’s nap time. That made me uneasy. The van ride to and from school was a 45 minute ride one way. That made me uneasy. Instead of speaking up I just continued to nod and agree with everything that was being said. All of the smart folks were telling me so. They said, when your child turns three it’s time to send them to preschool. I followed dutifully.
Once home, I still couldn’t shake that uneasy feeling and talked with my husband about it. We decided to wait until Fall to enroll Owen in preschool. I waited until our next meeting to inform the staff at IU. I told them that I felt we were setting Owen up to fail by starting him in the middle of the year during his nap time and that it would be best to reevaluate things in the Fall. They were very understanding and accommodating. I walked out of that meeting feeling like a big girl even though my knees were shaking and my chest had broken out in hives. That was the first time I actively advocated for my son.
Through the rest of that winter, spring and then summer I worked diligently with Owen, weaning him from his nap and preparing him for preschool. We read social stories about school and visited the classroom several times before his first day. That Fall, during an IEP meeting I told them of his progress as well as my concerns with him wandering off during class. We had had a couple incidences where he wandered off during a sports class and people found him wandering the halls alone. One of the therapists at the IEP meeting responded with, “It’s time to let him go. You need to give him wings and let him fly on his own.” Her comment immediately made me feel self conscious about my parenting and instead of speaking up I agreed with her and signed Owen up for preschool. He was three years old at that time.
Owen was as prepared as he could be for his first day of preschool and it went really well. His teacher and the aides in the classroom were wonderful. He would leave just as I was putting Eli down for his nap. Suddenly, I had two hours to myself in the middle of the day and it was wonderful. However, little by little I began losing touch with my son. I would spend most of the morning preparing him for the school day ahead. Using visual schedules and social stories to help prepare him as best I could. He was so tired when he got home from school that he needed an hour of downtime before we could do anything. Unable to tell me about his day I’d search through his backpack looking for the note from his teacher. She always filled out a picture schedule and circled the things they did that day. The items circled were frequently the same. I would try to get Owen to elaborate but of course he couldn’t. I didn’t know what they were working on or how they were teaching him and I felt at a loss. Suddenly our days were filled with waiting. We’d wake up and wait until it was time for Owen to go to preschool, then we’d wait for the bus, then I’d wait for Eli to wake up, then we’d wait for the bus to drop Owen off, then I’d wait for my husband to come home, then it was time for bed then time to wake up and do it all over again. I didn’t like it. I continued to feel uneasy and decided to look for alternative solutions.
That’s when I discovered homeschooling. I read a couple of articles and discovered that it wasn’t anything like my preconceived notions of it. I soon realized that there was an entire homeschool movement our there from all walks of life and for a variety of reasons. The more I read about it the more I felt that this was the right decision for our family.
I pulled Owen out of preschool the moment my husband hesitantly agreed to it. To others I used excuses like the bus ride was too long and that he wasn’t getting much socialization in the autistic based classroom. I wasn’t confident enough in my decision yet to tell them the truth. That homeschooling was the right fit for our family. I was intimidated and scared taking on the added responsibility of my children’s education. However, since starting homeschooling I haven’t once felt that uneasy feeling. I have faith that we are on the right path.
Deciding to homeschool is the first time I made a decision that goes against societal expectations. It was a decision that I made and then stood behind when my husband and close family had their doubts. I didn’t waver, I didn’t back down. I was doing what I know in my heart is best for Owen and I was ready to fight. Fortunately, I have a very loving and supportive family that may not always agree with my decisions but do their best to understand and support me anyway.
Finally autism is teaching me patience. I’ve always been an, “I want what I want when I want it” kinda gal and never had a lot of patience. Since Owen’s diagnosis, I’m learning to be calm, to quiet my expectations, and to let Owen guide me instead of forcing him to conform. If it’s not working, I’m learning to let it go, for now. I used to get stuck on wanting him to do certain things. I would harp on him and do hand-over-hand until we were both in tears. It didn’t teach him anything except to dislike being with me and I him. Now, when I see that I’m pushing too hard, I send up a prayer and let go. This is life. We aren’t in a race to the finish line. Strong, healthy relationships and self esteem are the main goal. Everything else is just icing on the cake.