My daughter at age 5: 3 years away from becoming diagnosed with Autism Spectrum Disorder.

The summer before my daughter started school was extremely challenging. She didn’t  know how to play by herself. Actually, she didn’t want to do any form of entertainment on her own. I even sat down and watched shows with her. Also, I was pregnant with our second child at this point. I remember being so tired.. just playing with my daughter because her type of play was so intense. She had/has an amazing imagination, however at this age she could not use her imagination for self entertainment. My daughter would say huge sentences about our role play, then ask me to repeat exactly what she said. I wasn’t allowed to be creative playing with her, it had to be what she wanted said, word for word. Then, she would role play, then again say, “Okay mom, now say this”. I would sit and play with her because it seemed as if this was the only way she could play. She would become frustrated if I wanted to say my own thoughts for the game or change what she said. It was a long summer. Lots of fun times had as well, however! I was thrilled to spend the summer with her as I was off on maternity leave. We worked on spelling her name, learning her address and phone number, things of this nature. She learned everything like this before school started! She is such a smart amazing girl! I was/am extremely proud of her. 

The first day of school came and my daughter couldn’t have been any happier! She was so excited for school. When she got home, she shared about her amazing day, new friends, she loved her teacher, and she was so excited to go back. The rest of the year went like this, in school. However, at home… it was completely the opposite. Because of this issue, there were people that thought because she was great in school, clearly I was doing something wrong at home. Comments like this, or unwanted recommendations towards my parenting, hurt. Why couldn’t anyone understand that I did not allow my daughter to act this way. I would get comments such as- she acted this way because I “let” her, I don’t give enough time outs. This was always a good one- she’s spoiled and gets whatever she wants (totally not true). But because nobody could “see her disability” and at this time I had no real help professionally… I had nothing to back up my way of parenting. It was such a battle. People expected my daughter to act a certain way because she looked a certain way. Throughout the school year she met so many nice friends, always had someone to play with, and everyone LOVED her. At the end of the school year, her teacher contacted me and told me that she noticed Bailey (continuously) being mean to her friends, like … really mean, and for no apparent reason. She thought this was strange because she was always so happy and social. This was when she really started to regress socially. It was now noticeable. She also started regressing with motor skills she already had, as well as her focus in sports/groups. 

The summer after the first year of school was very challenging. She (what I now know is regression) didn’t want to bathe herself much, she was getting very frustrated with her clothing and frequently needed help. Lots of (what I now know is anxiety). Also, so many sensory issues. I didn’t know this term then, it seemed as if she was trying to control situations, but looking back, she was trying to create an environment that was comfortable for her. She Wasn’t sleeping well at all, and would usually wake me up by 6:00 am, if not earlier- this was after she was already up throughout the night. It was getting increasingly harder for family members to deal with her. If someone told my daughter they were doing something with her and canceled, or told her one thing and then did another- my daughter would completely lose her mind. She couldn’t cope emotionally. I didn’t know this at the time, but she didn’t even know what she was feeling. A lot of unwanted advice came with that as well. People expected her to behave appropriately, and when she lost control of herself, instead of people being respectful and thinking of ways they could help- she was yelled at and made to fell as if it was her own fault. No one understood her besides me, and I didn’t even completely understand. She would only open up to me, so whatever she told me, I trusted. Most of the time- all of the time- she would tell the truth. It would be the other people adjusting the story. People would say she’s lying, but it was just how she interpreted the situation. One of the millions of things that amazes me about my daughter is that she is compelled to tell the truth! She doesn’t lie. (she is kind of learning how to know, however. But nothing serious)! She even tells on herself! The summer came, we had some challenging days, we had some amazing days. My daughter’s birthday is in the summer, so that summer we had a fun party with friends and family. I kept on her about her manners (words- she did great with, such as please and thank you, and your welcome). Unspoken rules about social interactions is what she was really struggling with at this point in time.

Although age 5 was a hard year, my daughter was happy. We dealt with issues as they came, she had lots of friends, she loved her new sister. I tried my best to teach her right from wrong, and to be there when she needed me. I thought this year was challenging- I had no idea what was in store for us over the next couple of years. 

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