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My Son is too Normal?

December 5, 2014

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If you are a regular reader of my blog, you know that my youngest son has also been diagnosed on the autism spectrum.  When we felt something was wrong we got him into early intervention as soon as possible.  He started at 18 months old.  He saw speech therapists, occupational therapists, and teachers 4 times a week.  It was an intensive program that helped him flourish.  He went from hardly any speech at 16-18 months, to having excellent speech by the age of 3.  He has fantastic, off the charts cognitive ability also.  Which wasn’t a surprise.  Both he and his older brother are so smart it’s scary.  So as his early intervention program was winding down due to him aging out, we had to start the testing process with our school district.  Right off the bat, I felt uneasy about what was going to happen with this transition.  Since he is so smart, and cute, and personable it’s easy to *think* there are no issues and he is a perfect child.  And that is just what happened.  In the initial testing I was told not to expect much help.  He was too advanced, had too many skills, and they really didn’t think he would qualify for anything.  I pushed anyway since we have a diagnosis and I know my own child.  I know that he made wonderful progress, but I also know that if we don’t continue with this kind of help he could very well regress.  AND…. I since I am with him 24/7  I am witness to the meltdowns, the transitions, the bolting (that has just started)  the sensory issues and so on.  So we went for a full testing with the school district.  My son couldn’t have been more “perfect” during this testing.  He performed every task without batting an eye.  No tears, no meltdowns.  He charmed each and everyone in the room with his smiles and asking to sit on their laps.   They were all amazed.  I was sunk.  I knew what the IEP would be like.  It would be.. NO.  When one of the professionals testing him told me “he makes eye contact, he likes interaction with people, he isn’t autistic”  I said “Well it is a spectrum” They all looked at each-other with knowing looks.   I felt so dismissed.  They knew they had a fighter on their hands, and I knew I had a NO in my son’s future.

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His IEP meeting was set.  I asked my husband to take the day off of work to go in with me.  I knew I needed him there.  I talked to all of my son’s early intervention teachers and asked what they thought I should do.  I got great advice and felt ready for the meeting.  And then we got there.  Before opening the door I stopped, my husband looked over at me and asked what I was doing.  I said, “I have to take a deep breath before going in here”.  We got in and I knew immediately that they would say he wouldn’t qualify.  No one had said a word but I could just tell.  The meeting started and they all went on and on about how cute and fantastic he was.  (Yes I know… I KNOW)  As we got deeper into the meeting I felt myself turn to stone.  Arms folded, face set.  They saw it too.  My husband saw and it knew I was digging my heels in.  When they finally came out and said he would receive nothing because he didn’t meet the standard criteria……………… well………….  I said that I didn’t agree and that I think we better get an advocate and call a mediator to intervene.  The room got very quiet. My husband had to swoop in and save the day.  He started by telling them “Do you know why we are so adamant that our son receive services?  Because with our older son we knew something was wrong.  We knew it!  Everyone told us nothing was wrong.  Told us that he was just active.  That he would speak when he was ready.  That he would calm down when he got older.  Even my own family said we should just let him run outside and that is all he would need.  We didn’t get early intervention for him and by the time he was 3 1/2,  he was struggling.  So with our younger son we did everything we could.  We got him early intervention.   Now it’s like we are being punished because we did that and it helped.  Now he is just being cut loose to dangle in the wind or fall through the cracks.  All this hard work he did, we did,  and his teachers did and he could now regress because he’s *too normal* to qualify.”  They sat in silence.  Wide eyed.  I wanted to jump up and give him a standing ovation!  I added ” I am with him everyday, you saw him for an hour.  You didn’t see the behaviors and the sensory things I see and his teachers see all the time.”  With that speech, I saw the tide turn a bit.  The head of the team said she wanted to try something out.  She wants to have my son visit the high functioning preschool class and they can watch him interact and maybe get a better feel for what we are talking about.  They have never done anything like this before.  We tabled the IEP and now we will set up times when my son can visit the preschool.  It’s a small victory and I will take it.

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The main reason I am sharing this story is this:   Please know your rights as a parent, and your child’s rights within the school district. (read the pamphlet they give you.. research online.. ask other parents that have been though IEPs!)   Please don’t be intimidated.  Please stand up for what you know is the right thing for your child.  You are their parent, their only advocate, their lawyer!   Show them that you are willing to do what it takes to help your child succeed.  It’s the most important job you have.

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3 Comments
  1. Brenda permalink

    Thano you so much for sharing! My Daughter just went through this with our Grandson. They see the child for one whopping hour… I don’t know how they make such a important decision off of one hour! And like you said.. you are with your child 24/7 and you know your child. .. if any one knows how the child is.. it’s the Mother! My Grandson was the same way… he didn’t have one melt down..eevery thing that your son did. You would think that since they would know it takes more than one hour to see how things really are… with a stran get especially. Thank you again! God bless you and your family. Sending love and hugs.

  2. Brenda permalink

    So sorry, Couldn’t see what I was typing.. sorry for all the typos in my recent comment!

  3. I will be updating soon, but we just had our son’s second IEP and things when fantastic! They saw the issues we were talking about with the extra observation and my littlest will start preschool in a week!

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