Tag Archives: early intervention

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…

“G” birth to age 3

“G” celebrated her 11th birthday in December.  When she was born her life seemed so full of promise.  We think that about all our kids don’t we, that they can be anything they want to be.  I was always one to say, “I just want my kids to be happy,” but truth be told I DID expect more than that.  Deep down I guess I expected the children I brought into this world to be “good” people, productive members of society, contributing to their community, wherever that community was.

Many children with autism develop normally, and somewhere around 2years they start to regress.  That was not the case with G.  She never developed normally.  By the time she was 9 months old her pediatrician referred us to Early Intervention because she was failing to make physical milestones.  She did not roll over, she did not grab for toys or interact with them.  The pediatrician said, “Her legs are like jelly.”

By the time G was 11months old she was receiving physical therapy (PT) and occupational therapy (OT).  Months and months and months of both, listening to her cry as the therapists would try to get her to move her body when she was content to just lay there and stare at things.  MAKING her crawl against her will, MAKING her catch herself when she would start to fall (she had no protective instincts).  Then later on speech therapy (ST) was added because she wasn’t talking, wasn’t even able to chew food properly and would gag on everything (she would eat baby food till she was 3 1/2 years old).  Developmental therapy (DT) too, to try to teach her HOW to play with toys, and interact with her environment.

Her neurologist suspected she might have a mitochondrial disorder.  Think “Jerry’s kids” and muscular dystrophy.  We had to take her for an MRI and eventually a muscle biopsy to rule this out (or confirm it).  SIX WEEKS to wait for the results…  negative.  Then there was the 48hour EEG visit to the unit at the hospital where they monitor for seizures.  G would do this weird thing where she would roll her eyes back in her head and “zone.”  That test too was negative.

When she turned three, she graduated from Early Intervention and was sent to a full-day, five day a week, special needs preschool, and a whole new journey would begin there…

Now I have revised expectations for what G is capable of in her life, and I have learned a thing or two about myself in the process.  My main goal is still for my children to be happy.  But while I always believed that even the least among us offers something to the world (that’s what Christ teaches us after all), now I believe it on a cellular level.  G IS a “good” person, she WILL contribute to her community, she WILL be a productive member of society, just not in the most obvious ways.  She is awesome, and I am proud to be her mother.

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