Warning: Here is a "Kim Gets Real" post

So I may or may not have mentioned here (who knows what I have said here and what I haven't these days) that I joined a Facebook support group for parents of children with 1P36 Deletion Syndrome. I can't tell you how great this has been for me. There are 750 other parents there who have children who are like Flor in many ways (in one major way for sure-- the same genetic diagnosis). I have learned so much from the sharing of experiences, venting, asking questions, etc. For example, one of the major questions doctors couldn't answer for me about Flor was the big life expectancy question. The group has a mom whose daughter is currently 47 and the group also has members who have lost their 1P36 kids in childhood. So, while that doesn't really give me an answer, it gives me a much better idea. It all just depends. This is just one example of the kinds of things I have learned from the group.

Another major way the group has been a support to me is that I feel like I am getting free group therapy or something. The information shared there validates me and normalizes my experiences with Flor.  While we have been dealing with the pooping and spreading issues with Flor (which has happened a few more times- UGH), the group there has been a huge support as some of them have faced similar things with their kids. They have given me ideas to help her, but even more than that, just knowing that they "get it" is huge.

A recent question that was posed to the group was about behaviors in their 1P36 children. This was so great for me to read, not because I am so happy that these poor parents are dealing with so much, but again because it normalized some of my experiences with Flor. It's that questioning that I always do with her when we are facing particular behaviors that we don't understand: Would I understand this better if I had been able to be Flor's mom from the time she was a brand new baby? I am beginning to learn that the answer to that question is no, I would still question, I would still wonder, I would still not "get" her, and I would still be frustrated by the lack of ability to know what she needs/wants.

Here are some of the parent's comments that were posted on the FB page about their child's behaviors (I made sure to take off any identifying information, just in case anyone was worried)-

Yells, hits herself, hits others, bites herself, bites others, throws things, she put her head through a lead glass window, has tried to jump out of the car, runs away, holes in the wall, pulled off toenails, take off clothes in public and at home.... I am sure there is more.

Yesterday at 1:42pm via mobile · Like

Tantrums, crying, hitting (self & others), kicking, head banging, slapping own arms, hair-pulling (self & others), throwing... Putting hands in mouth was huge for many years--now much better. At school this year, they've decided to track 3 behaviors: hitting, kicking off/throwing shoes, spitting.

We have screaming tantrums that the entire neighbourhood can hear, broken windows, head banging, self mutilation, pulling hair out, running away, holes in wall, pulled door off hinge.

she bites her arm, hits herself and hits me. We are constantly working with her behavioral therapist trying to find ways to help her stop but nothing seems to be working. She thinks it's funny.

Rocks back and forth sometimes, gnaws on his wrist, or moans/cries when upset

Many of these are familiar to me because Flor does them too. I know it is hard to believe sometimes because she really can be such a sweetheart and a loving girl, but she also has some pretty difficult behaviors. The only ones who probably can vouch for that are the neighbors who have heard those awesome screaming fits. :) Tiny little Flor can throw a tantrum like nobody's business and can scream like she is being tortured when she is upset. While some of her behaviors have decreased since we have had her home (sucking her hands, for example), others seem to be increasing- the screaming, the poop stuff, and recently she has taken up spitting. What's hard is that she thinks things are funny sometimes, especially with other people (like at church with her Primary teacher- she has taken up spitting at her. Awesome, eh!?) We really can't leave Flor alone with other kids, even Hallie and Jace, because it turns into a big hair pulling, biting, scratching war (Jace is a big instigator of that too-- let's give him credit where credit is due!).

So, the point of all this is just to share what I am learning. I am learning that learning about Flor is going to be a lifetime pursuit. I am glad that I get the opportunity to have her in my life, because she sure teaches me a lot. I can't wait for the day when I can actually have a conversation with her that we can both understand. I know I will have a lot of apologizing to do, because I am certainly not a perfect mom. I handle things wrong all the time. But at the same time, I am learning to cut myself some slack. I am trying to let go of some of the guilt that I have carried around that I should understand her better or know how to handle her behaviors better. I am trying to lose the expectations that I will be able to comfort her every time she is upset or that I will be able to discipline her in just the right way that she will not continue to do certain things. This group has helped me see other moms (and dads) who are battling the same things and sometimes have the same feelings, even though most of them have been able to be their child's parent from day one.

And, on particularly rough days, all I have to do is look at her little face and remember that it is the same little face that I fell in love with 8 years ago. I dreamed of having her in my life for so many years and my heart ached constantly when she wasn't yet mine.  Just looking at her little face in this picture brings up so many feelings- reminders of what I felt and what I knew about our connection when she was just a tiny baby. Those things are easy to forget when times are hard. The miracles that have led to Flor being in our lives forever are easy to overlook in the midst of poop and tantrums, but that is exactly when I need to cling to those feelings even more. I need to remember that she needs me, but just as much, I need her. Without her, I know that I wouldn't be able to reach the potential I was set out to achieve. It's an uphill battle and I think I fail more than I succeed, but I am grateful to be Flor's mom.

Nowadays. This was per a suggestion from some of the FB group members. They suggested that we should let Flor "smear" in a controlled environment to see if that sensory experience helped reduce the poop smearing. So we tried baby lotion on a cookie sheet and she had a ball, until she started eating the lotion that is. When she wouldn't stop eating it with prompts, she got the fun smearing experience taken away.  That led to a tantrum. So, it may have been a good experience, but I am not eager to try it again quite yet...