September 20, 2010

The Journey

The Good Food Fairy wasn't always the "Good" Food fairy.  Becoming a mother--learning how to nurture children--was a learning process.  I thought, "When the baby comes out and is in my arms, then I will know what to do."  Well, he came out and I loved him, but I had no idea what to do!  It was a process, becoming acquainted with my new baby, learning what he needed and how he needed it.  Learning how to make him comfortable and feel loved and safe.  It never dawned on me that different bodies, like different cars, may require different foods or fuel for optimal functioning. 

Each child has taught me something different and it was my oldest son, almost 11 years-old now, my "Hummingbird" that taught me how to be a mother.  He taught me about child development milestones and gross motor skills, he taught me about patience and built up my physical endurance and he taught me about food.

He was a very good baby, EXTREMELY active, desired to be outdoors, would light up with people and was very smart.  I had nicknamed him Boonie.  Around 8 months old, when we were living in Italy, Boonie started shaking his head back and forth in a funny, repeated way.  Six months later, he started putting his ear directly on the speaker of musical toys and wasn't talking.  By 24 months, my Boonie was not talking still and was playing with toys in a repetitive, odd fashion.  He also liked turning the lights on and off.  I talked to two doctors about it and brought up autism, but they both said that boys talk late and that he was too social of a baby for autism.

That was October and in December, my husband and I were volunteering in the nursery one Sunday and I saw that my little guy wasn't doing what the other kids were doing.  He was wandering around the table at snack time taking raisins and goldfish off the other children's napkins instead of sitting down to their little table and he didn't sit and listen to the nursery leader when she gathered the children for songs and stories.  The next day I talked to my son's babysitter and asked her if she had observed differences between him and the other children.  She told me yes.  "He doesn't go outside anymore," she said, "and he used to play outside all the time."  She also described how he had become focused on certain sound making toys or spinner toys and would play with them over and over and over. "What should I do?"  I asked  I am grateful to this day that she said what she said: "Have a consultation with you pediatrician.  There might not be anything to worry about, but you would hate for there to be something wrong and to have not addressed it and gotten him the help he needs."

By now, my husband was at USC law school and I was working at the School of Medicine there.  We had a new pediatrician at one of USC's facilities and she told us, "There may be something wrong, there may not, but lets start with a speech and language assessment and go from there."  So I did.  I took him to our appointment at Children's Hospital.  The lady speech pathologist played with him, talked with him and finally sat down to conference with me.  She said, "He does have a speech delay, but I also have observed some autistic-like behaviors and I am referring you to the Lanterman Regional Center for further assessment.

At this point, I knew my sweet boy was not developmentally on track, but knew that he had been fully present and connected with me, but a wall--a barrier--had subtly materialized between us, and  I wanted tools to help me help him get out from behind that barrier.  I didn't know if this constituted autism, but knowledge is power and I was learning. 

California has a Regional Center program for those with special needs.  Once you are diagnosed with special needs or disabilities you are in the Regional Center system and you are in for life.  They coordinate and provide all your services by vendoring with various providers until the child  reaches the age of 3 at which time the school district takes over payment for those services that pertain to the child's education (speech therapy, occupational therapy, sensory integration, etc.).  The regional center continues to provide social therapies if still appropriate for that child.  My husband and I took my boy to the our assessment at the regional
center.  The lovely young psychologist had such a positive and pleasant air about her and immediately put me at ease.  Like the speech and language assessment, she played with Boonie using various toys, observed him playing, talked with him, gave him chalk and asked him to write a line on a small chalk board, etc. Then she sat down with us.  "I am giving him a diagnosis of mild autism," she said.  "I am making this diagnosis because he has behaviors that fall under the criteria for Autism:."  She explained what they were:  Communication impairment, sensory difficulties, and repetitive play primarily.  Like each professional before her that we had seen, she was very encouraging and optimistic.  She said, "I am giving him this diagnosis so that he can get services now, but things could change in one year, three years, five years.  When they reassess him at 6 years-old, they may say that he doesn't need an autism diagnosis anymore."  That gave me great hope.

That night I was on the phone with my mom.  She is an elementary school teacher in a low socioeconomic neighborhood.  She has seen it all: children who were drug babies, children with issues not assessed or children not advocated for.  She told me, "Just use the label for what you need it for, but treat Boonie like Boonie.  Do not treat him like a label.  I didn't raise you kids to be one thing or the other.  And he is just not that far off of a typical child."

So I quit my job and told my husband that we would have to make it work financially, because I needed to be at home to help our child.

To be cont'd...

1 comment:

  1. OH Stephanie! LOVE the Blog. You are so candid AND funny. Right now I am crying..for real. I can so relate to your story of your first guy! With Noah's eye (nystagmus), I too quit my job when he was around 10 months so I could take him to all of his therapies! Alos...I love your cooking so much! I do the chicken recipe too and then make tacos and soup, in fact we had the roast chicken last night with pita, veggies and hummus and tonight is SOUP :)
    -Amy A.

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