Wednesday, 27 June 2012


If I had a penny for every second I spend worrying about the boys I would be able to afford ALL of the care they will ever need.  Right now, Nathan's needs are at the forefront of my mind and I am having difficulty thinking of anything else...

You see, I got a report in the mail from Kennedy Krieger yesterday.  From the testing we had done in May as a part of the REACH study.  When a letter begins with "The scores from these evaluations should be viewed with caution due to Nathan's young age.  Young children do not always respond at their best when influenced by variables such as unfamiliar settings, hunger, minor discomforts and shyness,"  it's not usually a good thing right?  But of course then it says "Nathan coped well with many of the demands placed on him.  He had difficulty participating in some clinician directed tasks; however, he was able to complete all attempted assessment tasks with support and reinforcement from his parents and the clinician."  AKA, he performed well given circumstances.  

They performed 3 different assessments on Nate- the Mullen Scales of Early Learning, the Autism Diagnostic Observation Schedule, and the Communication and Symbolic Behavior Scales Developmental Profile.  They only gave us partial Mullen Results- basically enough information to let us know that he qualified for the study (the one we could not logistically participate in), but not enough to give us the full picture.  What they did send us was devastating. To the point where I just told my husband about it maybe 30 minutes ago....I needed a little time.  As I have said in the past, we know he is severely delayed, communication at 15 mos when he is 30 mos old, etc.  But when numbers are pushed in your face....well, see how it makes you feel...
these are the only 2 they gave us:
visual reception:  percentile 5, age equivalent 23 months
receptive language:  percentile 1, age equivalent 15 months

1st percentile?  Really?  99 percent of children are at a higher performance level?  Here is the language that went along with that number
"In the area of receptive language, Nathan performed in the very low range.  Some of the tasks he completed include:  identifying an object when named, giving a toy to the examiner when asked to do so, and demonstrating comprehension of a basic question.  He did not follow single step directions without gestural cues, identify body parts in a picture, or demonstrate comprehension of questions by pointing to pictures in a book".  "Based on observation, Nathan demonstrated difficulties in communication and reciprocal social interaction skills.  He demonstrated delayed expressive language skills (eg, spoke less than 5 words), inconsistently directed vocalization toward others and inconsistently used eye contact.  He did not point to objects, respond to a social smile, or respond to joint attention."
Now the positive:
"He shared enjoyment during a social interaction routine (tickle game), initiated a 3-point gaze shift to share interest in a toy and gave objects to others to request assistance."

I would like to say that I look at this information and think, that's not my kid!  He can do all of that!  But, it's accurate.  It's freaking accurate.  Other than responding to a social smile and responding to joint attention, which he does do for mommy and daddy,.  The only other thing they say is "Results from the evaluation indicated that Nathan met our research criteria for autism."  Great, thanks.

So here I sit again, completely consumed by the numbers.  Everyone seems to be so great at determining what is wrong (how he is not developing, that his head circumference is too large and grew too quickly), but why can't anyone fix it??  Why?  Where is the autism task force?  Because I don't know how people live through watching their kids struggle like this.  For years.  With hundreds of hours of intervention and very little progress.  I know, I know, I am supposed to only look at the small measurable steps and outcomes.  That is impossible to do all of the time.  I manage most days of the week, but when something like this pops out of your sends you reeling, just no other way to put it.

I look at all of the things we are doing....the supplements, the diets, the shots, the studies, the ABA, the OT, the floor time.  Are we spinning our wheels?  When is my child going to say CUP???  Or night night to daddy?  Neither of us verbally admits it to each other, but we have both developed "benchmark" words.  Things that we have consistently worked with Nate on- and I am talking a year.  Cup Nathan, say cup.  Tell daddy night night.  Each has happened maybe once.  In a year.  I don't mean to sound ungrateful, I mean at least he has 5 words right?  He's not completely nonverbal?  But when I think about what Jack could say at this age it just breaks my heart.

I want to freeze time, because a lot of services that he is entitled to now will not be available to him when he is older.  What if things don't improve?  Where will he go to school?  Will we be able to afford it?  Anyway, sorry for the negativity, but really, it's inevitable at times.  As positive as I try to stay about things, they really are not so great for him right now.

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