sometimes there is NO regression

Many autism stories we hear are about children who seemed to be developing normally, but at some point they experienced a slow or sudden regression.  The parents relate their confusion and panic at watching helplessly as their children “slipped away” from them.  What we don’t hear as often are stories of the children who never developed normally.

My daughter is one of those.

I had a very normal pregnancy – pretty bad 24 hour-a-day sickness for the first trimester (which I had even worse with my firstborn), normal weight gain, no complications.  The only issue with my daughter’s delivery was the presence of a little meconium, but she was checked by the pediatrician and she was fine.  Her early days were normal, but in early days all an infant does is eat, sleep and fill diapers.  After the first few months, when babies start to pick up their heads, kick their legs and reach for toys, we noticed she didn’t seem to be interested.  I brushed it off as her just taking her time.  But then she wasn’t rolling over.  I told myself, “each child is different.”  By six months my husband was starting to worry that something might by “off” but I was in denial.  By nine months he was annoyed with my inability to see that something was wrong with our baby, annoyed with my making excuses for her lack of meeting basic physical milestones:  no pulling herself to all fours, still not even rolling over, no interaction with toys other than “staring” at them.  She was alert, her eye contact with people seemed acceptable, and her ability to “look into” objects was actually very intense – as if she was solely experiencing things with her sense of sight (which makes sense since she wasn’t reaching out to touch anything).

Her 9 month well-baby checkup was the turning point for me and confirmation for my husband.  The pediatrician said, “Something is not right.  Her legs are like jelly.  Her overall muscle tone is extremely low.  I think she needs to be evaluated by Early Intervention.”  I felt like someone had punched me in the gut.  My head was spinning.  A trusted medical professional was telling me something was wrong with my baby.  I wish I could say my husband “rose above,” but he was so frustrated with me that he couldn’t resist a few “I told you so’s.”  I don’t blame him.

Early Intervention came to our house to do an evaluation when our daughter was 10 months old and their assessment concluded that she was more than 33% delayed in ALL developmental areas (the “more than 33%” was what she needed to qualify for services).  When you consider that she was only 10 months old, 33% put her at around a THREE MONTH OLD developmental age.  Another punch in the gut.  It’s hard enough to hear a medical professional tell you something is wrong, but when you see it written, in black and white, in a multi-page evaluation that goes into excruciating detail about what your child cannot do – well, that’s a whole new level of pain, fear and grief.

When she was 11 months old we started having physical and occupational therapists come to our home several times a week to torture her.  I say “torture” because that’s what it sounded like.  She would cry and sometimes even scream the whole time they were with her.  They were forcing her to move her body, forcing her to touch things (her hands were still “fisted” like an infant).  My four year old daughter hated those therapists for the longest time because she thought they were hurting her sister, and she was angry with me for letting them.  This four year old was also angry with me for learning the exercises the therapists were doing with her little sister, and doing them with her myself when they weren’t around.   It took constant explaining for my four year old to learn these therapists (and her parents) were actually trying to help her little sister.  Help sounded a lot like hurt.  I wasn’t surprised at my four year old’s confusion – sometimes I felt confused myself and would cry along with my baby as I forced her to do the exercises.

I started learning a whole new vocabulary – hypotonia, sensory processing or integration, sensory defensiveness, sensory diet, proprioception and vestibular systems, motor planning.  I had to immerse myself in a whole new world, the world of “special needs.”  Toy shopping changed from looking for “fun” toys to searching out toys that served useful functions.  I lived trying to parent my four year old typical child and my one year old “different” child.  I lived an existence of balancing their needs with my own PROFOUND grief and worry for my baby.  Thank God there was a woman at church who had a five year old with autism.  Our daughter hadn’t been diagnosed yet, but it helped tremendously to have another “special needs” mom that I could bounce questions off of and with whom I could share my tears.

I asked all the typical questions.  Did I DO something to cause this?  Could I have done something to prevent these problems?  What should I be doing NOW to help her? The first two questions would never have answers, and the third had SO many answers I was often overwhelmed with trying to sort out the wise from the ridiculous.  I felt tremendous guilt, tremendous grief, and at times tremendous anger.  We all eventually adjusted to our life of therapies and interventions, but even now, 11 years into this journey, that “punched in the gut” feeling still pops up, more often than I would like…


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4 thoughts on “sometimes there is NO regression

  1. qwietpleez September 15, 2014 at 11:40 pm Reply

    I have two boys on the spectrum, they are now 22 and 25, like your daughter, they did not regress, there was simply a lack of progress. We began early intervention very early as well, I thank God I pushed and pushed, 20+ years ago, there wasn’t talk of a *spectrum* and much of what concerned me was initially shrugged off . . .

    I love seeing blogs and articles sharing the other side of autism, it shows it truly is a spectrum, each child beautifully different :o)

    • lisaleben September 16, 2014 at 7:37 am Reply

      Thanks for reading and for your feedback! It’s comforting to find other parents out there like us. And good for you at being such a good advocate for your sons!

  2. The Biopsy | Lisa's Leben September 22, 2014 at 5:29 pm Reply

    […] my last post about autism I shared how my daughter never experienced any regression, that she was delayed almost […]

  3. EEG | Lisa's Leben September 25, 2014 at 1:51 pm Reply

    […] third chapter of my daughter’s journey to her autism diagnosis.  In the first post “sometimes there is NO regression” I wrote about being forced to realize there was something wrong with my daughter.  In the […]

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