At this point in our life, when our daughter was 6, it was 2015. Our daughter just started grade 1, and her behavior was increasingly difficult at home. She still had a lot of friends at this point, she was social and everyone loved her. She was going into her second year of playing hockey, and this came very natural to her! She was doing great with academics, and her teachers enjoyed having her in class. She didn’t created any issues in class, and was very respectful with any of the teachers at her school. However, as the year went by, her teachers “noticed little things; Such as our daughter being rude to her classmates during free time, lunch, or recess. She didn’t do well when she didn’t have structure. However, people saw it as her doing this because she thought she could get away with things if teachers were not as observant as they are during scheduled classes. During this period, it was usually the other children’s point of view that was told to the teacher. Bailey seemed as if she didn’t care when spoken to, but at this time she could not communicate her feelings or thoughts, especially not enough to defend herself to an adult, after being accused of something.
During this year, I gave birth to my third daughter. Things were busy at home with the new baby but our daughters loved the baby and helped out anyway they could! Our oldest daughter really cherished the baby and they bonded right away. However, things between our middle child and our oldest (with asd) were not the best. Things my middle child did started to really bother my daughter with asd (all normal developmental things, however our daughter with asd could not handle it). We had to teach our daughter (with asd) how to play/ talk appropriately to our middle child.
Parenting my oldest daughter became a challenge. She wanted to do things her way, and if she was told no her reaction could go from yelling and screaming/ saying rude things to us, or just cry and become very emotional.There were also lots of melt downs, and time outs didn’t work. Also, Her interests were a different than her friends. She loved all of the same toy/ games her friends liked, however she had lots of other interests, and these turned into obsessions. Her friends didn’t understand why she would like these interests, and they did not share the same excitement. Around this time, my daughter really became obsessed with woman giving birth. I will add this- my daughter had a strong interested in birth and the anatomy of women since she was about 2. It did not start when I was pregnant. She had these amazing thoughts before she was even a sister! But when she did become a sister, the obsession became more intense.
At this point, it was very hard for our family to take our daughter for long periods of time. Or, situations would occur with family and they wouldn’t know how to deal with it properly. Because of these situations, our daughter would come back from a family visit and sometimes be upset because she was accused of being a ‘certain way’. Or others would interpret her thoughts and ideas as ungrateful…this was frustrating for everyone. I began a lot (and I mean a lot) of research. I knew these behaviors were not “normal” and slowly, I was finding it very difficult to parent my daughter. It was hard for family because my daughter “looked normal”, so she was expected to “act normal”.
I took my research to the community mental health worker from our local Children’s hospital, who worked at my doctors office. She thought I was losing it. I actually made the suggestion of Autism at some point, she thought this was very far off, and suggested for me to stop all the research. Of course … I didn’t! I needed to figure out how to parent my daughter, so I researched her behaviors and ways to parent kids with the behaviors she was showing. It was so difficult.
Trying to have someone take us seriously was frustrating and draining. I felt as if I was the only one who knew something was not right with my daughter. I saw my daughter slipping away and regressing, I knew that the way my daughter was, was not her fault. The pain in her eyes when someone didn’t understand her, the hurt I heard in her voice when she couldn’t explain herself but wanted someone to listen. I felt horrible that I couldn’t get her the help she needed, because the professionals didn’t think anything serious was wrong. I was still being told what I should do, to be a better stronger parent. I listened, and did the things they said to do… but we needed more. Much more.
Towards the end of the year, my daughter’s grade 1 teachers started noticing some issues, socially. It was noticed that she couldn’t tell her side of a story because she just couldn’t express herself to the teachers. This became very frustrating for my daughter, and she increasingly felt as if her teachers hated her. She felt as if everyone was out to get her. I had a couple of meetings with her teachers and principal so we could work on better communication between Bailey, her teachers, and myself. Things would happen at school and there would be no record of it in my daughter’s communication book she had to bring home daily. I would actually get upset because the schools communication was terrible. My daughter would come home and tell me a huge story about something that happened, and the school didn’t think that information needed to be shared with me. Thankfully after the few meetings we had, the school did end up sharing a lot of information with me, and I was able to use this to get us started with the help we needed.
One thing that I learned from this year, trying to get help we needed, talking with professionals… is that- you do not have to listen and take their direction! Your child will most likely act differently in a room, in a hospital or doctors office. My daughter knew she was expected to act a certain way in these places. How can professionals see a child for 30 mins and really get much of anything out of them? It is okay to question the professionals working with you and your child. You are the parent, and you know your child best. I encourage any parent to speak up if you feel the professionals in your life are not making the recommendations you feel your child needs. If you talk loud enough and long enough…someone will listen!