Fighting to pave the path

Sometimes all of the fighting can break you down, make you crumble on the inside.  And no matter where you turn all you can see is another battle ahead.  Two weeks of budget hearings, followed by a Kindergarten meeting and figuring out Health Insurance, tight deadlines to just name a few and the walls feel like they are closing around me.  And I could feel the breaking point.

Don’t cry, don’t cry. I chanted in my head.  I can feel my voice starting to waiver. NOOOO,  I say to myself. it’s fine they are listening to you, they are hearing your concerns, don’t do it. But the tears start to fall.  It’s our second school meeting.  I have been so worried about Mateo entering Kindergarten in August.  All of the stress and worries are flowing out and I can’t hold it together.

Both of the Special Ed Coordinators are mom’s themselves they look at me not with concern or pity but understanding.  They tell me not to worry, that they want Mateo to succeed, they will do what’s best for him.  And I believe them, I really do.  I don’t feel like they are giving me lines to get me to be complacent, I really feel that this school wants Mateo to be happy and have a great year in a “typical” school.  Since speech and communication are his biggest hurdles, she is eager to get him more time with a speech therapist.

The Special Ed Coordinator says, “Let us know when they send you the IEP invitation with your current district so you can invite us.” Reuben and I glance at each other.

I laugh. She gives me a perplexed look.

“I have never received an IEP letter except for AFTER I have called the district to set up an IEP meeting.” I reply.

“What????!” Her face has changed to shock as she says to us, “You have had to call THEM to set up an IEP.”

Not just one IEP, EVERY IEP!  The school could hardly believe it.  I tell them how Mateo was told to go to a Special Ed Preschool that consisted of ONLY two lower-functioning children. And we fought it! And how their evaluations of him were far below what he was capable of.  Just to save money.  And how it’s been one long battle since he’s been diagnosed. And now we have to go to another IEP since our new school will have to honor that IEP for the first 30 days.  How can anyone be expected to know this system or how to navigate it?

His new school now understood the tears, the worried expression on my face. They said they can’t believe everything we have been through. And that things will be different.

I believe them, I want to have faith, I want to have trust.  But I am also a fighter, and I won’t hesitate to fight for what I feel is the best for Mateo.  I won’t let the Government tell him he isn’t worthy of services, I won’t let the schools tell him he’s not worthy of the services he needs to succeed.  And I won’t let anything stand in his way.  I will always tell him that he can do anything a “Neuro-typical” kid can, and to never let anyone tell him different.

And already the struggles and the battles have paid off for him and I know everything is worth it.  Sometimes though, I wish it was easier. That the world would see that this is our future, and we need to take care of these kids today, because an insurgence is coming.  More and more children are diagnosed every year.  We have no plan for them.  It’s time to come up with a way to help these children thrive and find their way! Right now somewhere a Mom and Dad are hearing that their child has Autism. I would like to find a way to pave the path for them, to make things easier.

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2 Responses to Fighting to pave the path

  1. Heidi says:

    This just made me cry. I’m so sorry Melissa. Teo is very lucky to have parents like you and Reuben who will fight for him.

  2. Hank says:

    I am so sorry you guys have such an uphill struggle on your hands in getting Teo the services and education he deserves. Heidi is right, he is so lucky to have wonderful caring parents like you and Reuben. I have much respect for what you two are doing and the daunting task you are facing. Hang in there, all of the stress and fighting the “system” are definitely paying off! Love you guys!

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