Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, October 12, 2010

Gladiator Games and IEP's

I enter the coliseum, ill prepared for my first battle as Gladiator and Protector of a son diagnosed with special needs. 

The coliseum is a conference room, and in it, a round table where the battle over my son’s IEP will take place. I have been given no weapons, no rules of engagement. Several teachers march assuredly into the conference room. I am drastically outnumbered. The challengers have come prepared for battle. In their eyes, a calmness, an inner confidence in their combat abilities derived from many years of fighting skillfully and winning victoriously together. Armed with progress reports and therapist recommendations, they are fearsome opponents. Instinctively, within seconds, they size me up and determine my worth as a potential adversary.

I am immediately intimidated. 

I am seated at a table alone, across from me, my opponent, the school. Their objective: to spend as FEW precious dollars as possible in providing my son with an education that MEETS expectations. My objective: to get them to spend as MANY dollars as possible in providing my son with an education that EXCEEDS expectations. The difference between meets and exceeds, and few versus many, is significant and always results in a good fight.

During my first IEP, my inexperience in this foreign arena, causes me to sustain mortal wounds. I am carried out of the conference room by stretcher, bleeding and bewildered. Much like Gladiators in Roman times, I learn quickly how to engage skillfully in debate or suffer the dire consequences of another lost and frustrating year at public school for my struggling child.

The second time into the coliseum, I understand and respect the fierceness of my adversary. Briefed on my opponent's few weaknesses by fellow Gladiators, I develop a false sense of confidence. I enter the arena too boldly, anxious to avoid another exit by stretcher, I swiftly and viciously lop off the heads of my unsuspecting foe.

I feet pleased at first, of my swift victory and unscathed body. But it isn’t long before I realize, that my fierce opponent, is also the sole guardian, during school hours, of my precious child. I quickly grasp the important concept that a spurned and bitter teacher is not an ideal caretaker for my child. I made a big mistake.

A few battles more and I begin to find my pace. I discover if I temper my anxiousness with the ability to calmly listen, and adeptly explain, I begin to earn the respect of my opponent. This new-found ability usually helps to develop a more cooperative exchange with much better end results.

As the mother of two children diagnosed with special needs, my experience participating in the Gladiator Games is extensive. I have many battle scars to prove it. The greatest difficulty I face now is simply entering the arena void of emotion, since a brilliant performance in the ring directly depends upon it.  Like a true Gladiator, I need to act calmly, to think strategically, to gather any and all resources and to fight with courage, honor and dignity.

A true victory in the ring is only achieved when I am able to motivate my IEP team to see my son for who he truly is, a unique and valuable human being. A child who is worthy of their empathy, their hard work, their commitment to doing all that is necessary to see him succeed.  I have yelled, screamed, begged, and pleaded with both teachers and administrators, alike in an effort to get them to see my child as if he was their own. 

The night before an IEP is always a sleepless one. The day after, it’s battle fatigue. As a parent of a child with special needs it is just another sweaty and grueling role I play to ensure the quality of life for my child. I am a fighter, a warrior, an advocate, a Gladiator.

And so, let the Games begin.

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