Into the looking glass….

I am again feeling like I have let my son down.  It happened the first time almost three years ago when we got his diagnosis.  I felt that, as a speech therapist who works in early intervention, with kids on the spectrum, I should have seen this.  But I did not.  I believed all the medical people telling me it was bi-polar and ODD and ADHD and other things.  With time, I got over it.  He is my child not my client or a child I work with and that changes everything.  It changes emotional attachment, perspective, who you listen to, what you hear, what you allow yourself to believe.  It was a long very winding road to diagnosis and I wish it had been a different road, but it is what it is….moving on!

Then when we let our zone school move him to a school with an ASD unit, I let him down again.  The teachers did not understand him (even in the ASD class) and the administration had a “zero tolerance” policy for rule breaking—regardless of circumstances or the child’s diagnosis.  Now, I have never used my son’s ASD as an excuse for his behavior, but a principal should surely understand that when an ASD child has a meltdown, is being restrained and hits a teacher in the battle, that it is not the same thing as an NT child hitting a teacher because he didn’t like the instructions that were given.  In only 5 months the school had him both Baker Acted and arrested.  Inciting him and confronting him into a meltdown were daily occurrences and he hated going to school.  (Can you blame him?)  He was Baker Acted for saying “I would rather die than come back to school tomorrow.”  After hours in the ER and a nice bill to go with it the ER doc even recognized the comment was the equivalent of a child telling a sibling “I am going to kill you.” after a favorite toys was broken.  My son’s comment was no more suicidal than the other comment is homicidal.  He was arrested for “physically assaulting a teacher.”  He was denied a reinforcer (throwing a football on the playground) and picked up a handful of mulch and threw it.  Last time I checked much didn’t go far, couldn’t be thrown far and hardly counts as a weapon.  Both times he was transported in a police car.  When he was arrested he was even handcuffed.  I should have resisted, should have fought to get services in our zone school…..

That took longer to get over, but, after an advocate, a lawyer and a new school, he is thriving and loves school.  Again, I wish it had been a different path but it wasn’t.  I became a much stronger and more assertive advocate for my child and learned a lot about educational law.  Lessons learned…moving on!

Now as we transition into middle school I am feeling as though I missed the ball on reading skills.  Reading has never been a favorite activity for our son.  Even as a preschooler, where our older son would ask to be read to, read to himself and look through books by the hour, our younger son wanted to play and explore.   Three and a half years ago, when everything started to become a concern and we did not have a diagnosis, we had some educational testing done to look at learning styles, strengths and weaknesses.  Reading was an issue—no surprise to us.  We talked about tutoring or a reading program, but knew he would not cooperate and we didn’t have the money to spend for him to not participate and learn.  Then almost two years ago we had another round of reading assessments done.  We, again, were not surprised by the deficits.  We thought “he is now reading in school, likes school and will improve” and he has.  He reads at grade level, but not without significant challenges.  It is really hard for him.  So, knowing middle school services are harder to get, I bring it up again.  Only to find out the school is going to make me really fight for this.  His teachers (ASD and gen ed) agree with me and have examples of school work that support the concerns.  But no.  So….here I am again, feeling as though I have let him down.  What if I had pushed reading earlier and harder?  Well, I’ll never know. 

I am telling myself the truth—until now, he was not in a place academically or behaviorally to have actively participated in a reading program.  We would have fought each session and wasted money.  I know this in my head.  I know now is the time, not last year or the year before; it wouldn’t have worked then.  But I still feel in my heart I could have done more for this kind, compassionate, creative, bright, funny, joy of a son we have.  It hurts.  I will never know what could have been, only what will be from this day forward.  So I put on my big girl panties, pull up the shit kickin’ boots, put the advocate and lawyer back in speed dial and move on.

I know I will feel this way again.  It is part of being a parent.  The stakes are just so much higher with a son this special.  Each time something happens and I feel this way I will take a few moments to recognize my pain and possible faults- because I am not perfect (although the brick thinks I am) and I do and will make mistakes and incorrect choices- but then I will get up and move on.  Why? Because that’s what I need to do for my son!

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One response to “Into the looking glass….

  1. If you didn’t feel this way, I think you’d be doing both yourself, and him a disservice. The “mommy guilt” is intense with a NT child – more so with a special kid. But I know with me at least, it keeps things in perspective. It reminds me to stay on guard and be aware of everything that is happening, big and small. It’s a rough journey – sometimes it’s magical, and things you would usually take for granted are celebrated like the fourth of July – and sometimes it’s like walking blind down an unfamiliar alley in an unfamiliar city. I think you’re a kick-ass mommy 🙂

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