Something’s Not Right Here

I wrote yesterday about how I discovered that my daughter was born with Down Syndrome.  Needless to say, my husband and I were devastated!  All of our hopes and dreams for her kind of went down the toilet.  We didn’t realize at the time, but she was very healthy for a child with Down Syndrome.  She only had a small hole between the upper ventricles of her heart (ASD,) while many children with her diagnosis have many other health challenges, heart problems, duodenal atresia, etc.  So she did well.  However we didn’t realize this, so we were crushed.

We brought her home after about a week in the NICU, and he first night was spent in a dresser drawer with blankets covering the bottom.  She WAS almost four weeks early, so we had nothing ready for her.  I hardly slept that first night, keeping an eye on every breath and movement she made.  But the one worry I had about not being able to bond with her vanished.  She immediately had me wrapped around her finger!

Months went by, and the flood of various therapists began to trickle in.  We had Physical Therapy for her gross motor development and to help resolve her torticollis.  We had Occupational Therapy, Speech for feeding issues, as well as Developmental Therapy.  We also got connected with Gigi’s Playhouse in order to connect with others in our situation.  The biggest help for me was an online Trisomy 21 forum.  It was there where I found a great deal of support from mothers in my exact situation.  It was my lifeline.  In that forum, we compared strategies, therapeutic approaches, our joys and trials.  I don’t think anybody told me about this thing, though:
standerThe purpose is to help a child to support their weight on the feet.  However she bore a striking resemblance to this:

hannibal lector

We STILL laugh about that one!  But I digress………..

M (we’ll call my daughter that) was developing as well as I expected for Down Syndrome.  And she seemed to surpass other children in terms of walking.  She began walking at 2, four months earlier than my youngest and younger than many of the other kids with her diagnosis.  She was having sleep issues, though, not napping for more than 20-40 minutes at a time and later on, waking up for hours in the middle of the night.  We had a sleep study done, which did not find anything.  She also had constipation and had been on a ton of Miralax per the doctor’s orders.  A about 2 and a half, she was still not playing or showing much interest in playing.  She would roll a ball back and forth a little, and she liked musical toys, but that was about it.  And I noticed that the few push button toys that she operated, she kind of drifted away from.  She discovered Barney and began obsessively watching that.  I went online to other mothers and asked them what they did, and they kept saying, “You have to TEACH them how to play.”  Well I was trying, but nothing was happening.  I went online and googled “child with Down Syndrome does not play with toys.”  I got lots of links, but none of them were for Down Syndrome.  They were for Autism.  I decided to google the diagnostic criteria, and I was shocked.  My daughter had traits that fit the DSM IV.  She had repetitive movements, no eye contact, seemed to not hear her name, didn’t pretend play, had no joint attention and other traits.

With this knowledge, I approached her therapists and shared my concerns with them.  They were not as sold on it, but the developmental therapist said that she would tell our coordinator to set up a meeting with a team of their specialists to evaluate her.  When she was almost three, she was met by a psychologist, a developmental pediatrician and a speech therapist who worked with her for a couple of hours.  Their observation?  It was just the delays of Down Syndrome.  We went home that day with the idea that M just needed more time to develop.  That one day, she would start to blossom and we would see these skill emerge.  So we waited…………..

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