Monday, December 7, 2015


As a parent I am always struggling between honoring my child's feelings as well as doing what I feel is best for them.  I am pretty certain a lot of other mom's and dads feel the same.  For example, it happens to be neither healthy nor appropriate to go outside in 40-degree weather without a jacket and wearing "fip fops", despite the fact that my two year old would disagree.  My son would love to stay home from school every day and jump around constantly eating candy, yet that is definitely unhealthy and would not be beneficial socially or educationally.  My oldest would enjoy staying up late playing with her dolls in her bed or looking at books, but I have to tell her she needs to go to sleep or else in the morning we will all suffer.  Then there is the Sonze, she who would love to sit in her bouncer and suck her thumb all day yet I want her to work on her developmental skills and I cannot for the life of me figure out which is the most beneficial option for her.

We have been told that kids with CDKL5 have severe to profound developmental delays.  In reality, as hopeful as I am for Sonzee, despite the amount of time she spends working on her skills; she will always have a delay.  It is truthfully a more severe delay than I am currently able to accept at this point.  I think more severe than any of us parents with kiddos with this and similar diagnoses can ever accept.  For me, this is where I face my conundrum.  If Sonzee is not ever going to be as typical as I would have once thought she would be, and she is perfectly happy sitting in her chair, taking in the sights and sounds, do I take away her clear joy?  Do I make her spend her time doing things that might help her?  Am I actually giving her the best by making her do what I want for her?  Am I being fair?

We know there are children with CDKL5 who can learn to do basic skills.  These skills are typically attained after that of typically developing children.  In my conversations with other parents there is such a wide spectrum of ages that children can learn to perform skills, it is hard to pinpoint where, and if at all, Sonzee will fall on the scale.  There are children who can sit, crawl, walk, and sign/communicate a few words verbally.  There are also children who do not do any of the above-mentioned skills.  Not knowing what Sonzee will do makes this all the more difficult.  It is so hard for me to take the 5-10 minutes she is finally awake and happy and make her work on skills that she is so uncomfortable and angry working on.  I tell myself it is what is best for her in the long run, but is it?  Is making her miserable during what could be her only enjoyable time during the day really worth it?  Am I just ruining what happy time she could be experiencing for my hope, or is she ever going to look at me and "say" thank you?  

I know that my two year old might be upset at me for making her put on socks, shoes, and a jacket, but she will get over it, and when she is older, she will agree that not wearing flip flops and short sleeves during the winter were for the best.  I know my son will thank me when he graduates from college for making him go to school.  I know my oldest will be happy when she wakes up on time in the morning and gets to school on time without tears.  What I don't know is will Sonzee be more thankful for me letting her enjoy her simple pleasure of sitting in her bouncer sucking her thumb or for me making her work her little tushy off?   

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