My Daughter at age 6- Grade 1.

 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!

Social Masking And Girls With ASD.

My daughter knew how to fit in from a very young age. This is one of the many amazing things my daughter can do. I can talk positive about all of this now because I have so much information and my daughter can now communicate a lot of her feelings. Also, we see a very amazing autism team at our local children’s hospital. But trust me; up until this year things were still extremely hard to understand, and very overwhelming for my daughter and our family. 

So what is social masking? Social masking is where a person, like my high functioning autistic daughter, can “act” and make themselves fit in. It is not forced, and looks very natural. Which is the goal. Girls are amazing at observing and seeing how people act in a social setting. My daughter knew there were expectations, socially, so she would watch and observe what others did, and she did that too. This is why she was so successful in daycare. She took on the role of a teacher. This is what she also did in school, however, when the school friends turned a certain age they did not appreciate Bailey’s leadership qualities. 

My daughter would mask herself whenever she had a play date, out with a family member she wasn’t close with, or social functions. I would be extremely nervous if my daughter was going somewhere without me just because her behavior was so unpredictable. However, I only received amazing compliments when she would return home. She knew how she was suppose to “act” while she was out of the home, and she did it. But it took a lot out of her. This was extremely confusing at the time, and this is where a lot of negative comments about my parenting would come in. I heard, “She acts perfect with me.” Meaning… I must let her get away with everything because she was great when out. I couldn’t have possibly done anymore with my daughter, I didn’t know why this was the case, it just was. I didn’t have answers for people. And I knew I was being judged. Either I would hear it directly from someone, or hear that there was talk about my parenting. 

Social masking took everything out of my daughter. I know this now. But for 6 years, my daughter used social masking as a way to have friends and fit in- do the “normal” things kids do. But it was confusing to others when she would be wild at home and calm out of the home. When my daughter was finished with a play date, or came home from school-it was a nightmare. Looking back, knowing what I know now… it is so heartbreaking how hard she had to work to fit in. She would have migraines after playing with friends or being in school; come home and explode. She had to hold herself together for so many hours during the day. She would still experience sensory issues, people were extremely hard on her, all of this she had to keep inside until she got home. To her safe place. At home, she could explode. She knew her parents would love her no matter what. She is a social masking pro now, and she is getting really good at controlling her emotions. She learned to do a lot on her own because she was not diagnosed until age 8. It amazing me how smart and resilient my daughter is. I think things are challenging for me, as her mother, (which they are), but I can’t even begin to imagine how she feels on the inside. She once told me it felt like there was a storm inside of her (before she was diagnosed). I feel like that is an amazing description because when she explodes- it is one of the most terrifying, draining experiences I have ever had. I couldn’t even begin to comprehend what all of that would feel like, holding it all in when gone from home. My daughter is the strongest person I know.