Lauren had recent cognitive testing done at school. Legally, public school districts must do an evaluation every 3 years to ensure proper services are being rendered. For some parents, hearing the breakdown of data and the numbers can be frustrating and sad.
This time, for me, I found hearing and seeing the data to be empowering and validating. It doesn't make me sad to hear these delays because it's part of our life every day. It's empowering to see the data back up our experiences and the data is validating when the behaviors and abilities we see at home don't match up with her chronological age.
Lauren's age equivalents for her cognitive assessment were all around the 4 year old range (save for her fine and gross motor skills which are lower). Things like working memory, processing speed, and comprehension all tested right around where one would expect to see a typically developing 4 year old. Her lowest score was fluid reasoning, which is her ability to problem solve through a situation and draw inferences. This part of the evaluation was helpful for me! I am not a super patient person and there have been times recently where I can't help but think along the lines of "WHY don't you understand this?" Seeing the data that supports what we see at home is helpful to me.
We're in a really hard phase right now. It's just plain hard being Lauren's mom sometimes. And I often feel like I can't express this because I fear it coming off as complaining or like I'm somehow saying it's not worth it. Because we chose her and we chose this life and I'd choose her again and again. But, honestly, this is hard. We had an elopement scare last week. She left the (usually locked) backyard and got into Greg's car to play. He didn't see her in the car, so he and Ryan searched the neighborhood and didn't find her. I was out to dinner. I called 911 on my way home. They found her in the garage. She saw Greg and Ryan leave on their bikes to look for her and thought they were going on a bike ride without her. So they found her trying to strap herself into her adaptive bike. Then yesterday she dumped a full bottle of yellow mustard on our white couch and cream carpet. It's difficult to discipline something like that because there aren't any natural consequences. I understand that some people spank, but studies have shown it's not helpful for children with cognitive impairments and I fear her not understanding the why and just thinking I'm hitting her. When asked why she did that, she just repeats, "I don't know". So we took away her tablet for the rest of the day, which I don't even think bothered her much other than it minimally disrupted our normal bedtime routine.
It's hard for me to know how much to share about this parenting journey and my feelings surrounding it. Like all parenting, some days are fantastic and some days are really hard. But in a lot of ways it feels like we have a perpetual toddler and honestly it can be mentally, emotionally, and physically exhausting. The way Greg and I experience life as parents and as people are just different. Different from other parents and, quite honestly, different from each other. We camp (okay, it's glamping) a lot of weekends over the summer and the socializing I'm able to do is vastly different than what other parents of an 8 year old and a 10 year old can do. At 8 and 10, other kids at the campground are super independent and might need some food here or there. Lauren's needs are really more in line with where her skills lie, which is age 4-ish. I often can't sit at the campfire without her because she's lonely, afraid of the dark, or needs supervision. Sometimes she just doesn't want to be social (not surprising to all who know her). I hate to think of life in terms of what we can't do because of Lauren because she is amazing and wonderful and I wouldn't trade her for the world. But the truth is, life is different.
As she gets older I'm trying to lend myself grace and give permission to admit that this is hard. Full stop. It's also worth it. Full stop. And it's okay for these two ideas to coexist.
