Developmental Ups and Downs

Let me first say that if you did not read my “Why I Blog” post, you may want to go there first as this post is going to be very much a venting and whining session.  This is one of those times when I feel it is necessary for me to post something for the exact purpose of getting it off of my chest.  In a way, it may help other parents who have to deal with developmental delays with their own kids, but my sole purpose really is to get it out of my brain so I can move on.  Here goes . . .

We were dealt a blow yesterday.  Katie is behind.  When Andy was on insulin so many years ago, we knew he was behind.  He wasn’t doing anything he should be doing right on track.  As a parent, you always want the best for your child, but you also instinctively “know” when something is wrong.  Andy didn’t walk until he was 2o months old.  He still wasn’t really saying any words at age 2.  We knew what to expect when he was evaluated.  His first full evaluation was at 27 months old and he tested at the age of an 8-9 month old.  He was more than a year and a half behind.  So when Katie was born with the same genetic mutation, we immediately put her on glyburide.  It was hoped that with getting her on the proper treatment early, she would not have any delays in development.

At 7 months of age, I had her tested for the first time.  Her fine motor skills were just slightly delayed by about a month to 6 weeks.  The early intervention team gave me some games I could use with her at home to help stengthen and encourage her fine motor development.  At 9 months old, she was testing at 9-11 months across the board.  At a year old, I was ecstatic to find out she was so much on track that she didn’t even need to be checked again until 18 months.  During her 15 month well-baby check-up, I voiced some concerns about some of her feeding habits and lack of speech.  The doctor said to not be concerned, that she seemed fine. 

Yesterday was our big evaluation.  The Bailey test that covers all areas of development.  As it turns out, she was testing at about 14-16 months so she is now 3-5 months behind in her development.  I’ll admit it, I cried.  Before I even knew the results, the evaluator told me she would probably score low.  So between the evaluation and meeting with the neurologist, I had 30 minutes to get some coffee in the cafeteria and the tears came like a flood.  Of course, being the kind of person I am, my mind went immediately to blaming:

  • “I didn’t read to her enough”
  • “I didn’t talk to her enough”
  • “I didn’t play the right games”

Hold on, hold on, stop it.  Really?  Could I really be blaming myself for something that I may have no control over?  The fact of the matter is we don’t really know.  The facts are that at least 80% of children with the V59M mutation have neurological symptoms of some kind or another.  The facts are that we don’t know if getting on glyburide earlier will help with development of the brain.  We are the science experiment.  We are the pioneers.  The doctor tried to reassure me.  Who knows if things would be different if I had “Done More”?  Maybe she was having an off day.  She did wake up 3 times during the night and she woke up with a runny nose.  Her blood sugar was pretty high just before we drove to Seattle (274!).  She was putting EVERYTHING in her mouth (teething much?).  I’m not saying that if she was more “on her game” she would have tested perfect, but maybe she’s only 1-3 months behind instead of 3-5 months.  It’s just a snapshot of that day.

So now what?  Now I get her enrolled in Occupational and Speech Therapy to help encourage her development.  I read some books and apply what I know as a teacher and what I’ve learned from working with Andy to help her get back on track.  Now the real work starts.  I wanted to join in research for this rare condition.  Well, I got my wish.  Am I heartbroken?  Sure.  Does it mean the end of the world?  Absolutely not.  It means, time to get to work.  She is still very young and not nearly as behind as Andy was.  She may get back on track very quickly and be fine down the road.

Now for the good news.  The title of this post is “Ups and Downs” and we had a wonderful UP yesterday with Andy.  THE HAIRCUT.  Since Andy has Sensory Processing Disorder, one of the things that has been a headache has been haircutting and fingernail clipping.  For a child that is super sensitive to the sensations on his face, a haircut can feel like razor blades on the skin.  We have had to restrain, use bear hugs, and sit through screaming and kicking for so many years that haircuts are often put off for months at a time.  Last year, he started getting better when we found a kids’ salon that we went to with another child in his class.  That seemed to help a little, but I still had to hold him down when it came time for the buzzer and he still cried and batted the scissor away in the beginning. 

Then came yesterday.  I have been trying a new technique with Andy when I notice some sensory input is putting him in overdrive.  Lately when the wind is bothering him on our walks to the school bus, I’ve been teaching him to use distraction and redirection like singing a song instead of focusing on the wind.  Most of the time it works.  So yesterday, after climbing into the police car salon seat, I grabbed a toy from their toybox that had songs on it and spun when you pushed a button.  It worked.  He was distracted by the toy and the haircut didn’t bother him as much.  There was no crying (although he did cringe a little).  When it came time for the buzzer, I braced myself for a fight, but all I had to do was put one arm around his back and shoulders and he sat still.  Finally, SUCCESS! 

See?  Things do get better after all.

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About Christy

Christy Vacchio is a former teacher and now Science Instructional Coach in Cincinnati. She is an avid reader and researcher. While she has her bachelor's and master's degrees in education, she plans to get her PhD in Neuroscience in the future. She hopes to participate in research on Neonatal Diabetes and Developmental Delays one day.

6 thoughts on “Developmental Ups and Downs

  1. Seriously I have a knot in my throat- both for the up and the down of your yesterday… I know the happiness I feel for Andy’s success is multiplied by many for you 🙂 Every little or big step is so grand for our kids and mostly us 🙂 I often “try” to remember that a wonderful silver lining to all the delays is that unlike my friend’s and/or family members’ kids- I really , really get to appriciate the little moments – we don’t take a “sitting down in a chair by themselves” moment or a “picked up the spoon and put it in his mouth” moment for granted! It’s a celebration everytime 🙂
    And as far as little Katie is concerned – you are great! I think you are right in every word you said- it’s not the end but time to get started— but I will not lie to you when I say I truly understand your feelings about the recent eval results- because I have been there- and only time will tell if I will be there again- but if I am I hope I have your positive perspective and strength during the rough patches 🙂 XOXOXO

  2. Thank you so much Ailyn for the encouragement. Sometimes I think writing it down just helps me to appreciate it even more. I pray every day that you have a healthy baby, but just know that if it does happen again, it will not be the same. I was on a whole new learning curve when Katie was born and she is totally different from Andy. I am here for you if you need me. That’s why I do this.

  3. oh wow. i can relate to the flood of tears in the 30 mins at the cafe – almost like being a mummy requires you to ‘schedule’in some time to have some grief.. a safe moment to exhale all those worries and anxieties we have for our kids.
    please dont blame yourself. theres parents and kids that have none of the medical issues your family faces, and the kids are developmentally behind – go figure. just know you are doing your best. those kids are beautiful little individuals and they are lucky to have a great mummy who loves them very much. ((HUGS)).

  4. You are doing a fabulous job! I realize that I need to spend more time reading your blog because when I read your post about developmental ups and downs (as well as “why I blog”) I felt like I was reading some of my own thoughts! Our kids are so unique and I feel so misunderstood by other parents at times. I also blame myself, worry, cry, you name it! My parent conference at preschool which was really no big deal left me crying in the car because I saw some of my kiddo’s work as compared to others in his class. Whenever I have a bad moment or day dwelling on these things, it seems like God plants a very sweet or rewarding moment right in front of me, to remind me of how very blessed we are to have the miracle of glyburide. And to have these other wonderful parents to share with on our journey. Thank you for your blog!

  5. One of my non-D daughters had a speech delays so we don’t know if my D delay is caused by the mutation or it is just one of those things. She is almost up to speed on motor things. Not using cutlery consistently yet. Not real words.

    Congratulations on success at the hairdresser. Distraction is great.

  6. Kristen, you are so right. We have to sometimes remind ourselves that we have a miracle with our kids. They may be delayed with development, but we don’t have to give multiple shots or have to hook them up to an insulin pump. Except for the occasional blood sugar swings, they are relatively stable most of the time. We have it much easier in some ways than our friends in the Type 1 community. But we also have our own struggles. It’s hard NOT to compare our kids to others. That’s just something all parents do I think. Someday, maybe with all of our stories, we will learn how to lessen the impact of the delays. I am always here for support and encouragement.

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