Having a child with special needs is especially trying. Having two children with completely different yet completely the same special needs is stupefying some days. As my twins Gavin and Gabe get closer to their third birthday and graduation from the state of Illinois Early Intervention Program, a dark cloud rolls over. The side line conversations of IEPs, 504 plans, individual classroom aides, and therapy outside the home have begun to become a daily storm of confusion.
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| Gabe |
As "typical" children grow up they follow a "typical" path. They go from daycare or home with mom/dad, to preschool, to kindergarten and beyond. The burden of parenting a typical kid (which I would know, myself and my two sisters all grew up as one,) is really to make sure the lunch money makes it to school each week and isn't spent on 15 ding dongs, to badger their children into getting their homework filled out and turned in, and as they progress to teenagers to make sure they actually arrive to school each day and make it home. When you parent a special needs child, or children in my case, you have to put in place standards for every single aspect of their entire day in public schools. Will they eat lunch with other children or in a special classroom because of their oral and auditory sensory issues (Gabe). Will they need you to have the teacher, or aide if they grant him a personal one, orally read them all their homework because they have very poor and limited gross motor skills (Gavin). Will they be integrated into a typical classroom and be picked on because they have to wear their orthotics and special compression vests and stick out like a sore thumb (Gavin and Gabe). Should they be allowed extra time that the other students don't get to finish their work because the part of their brain that controls motor planning and processing was injured at birth or should they be put to the same standards as the other students because despite the slow speech they are just as intelligent as their peers (Gavin). Do you rally for occupational, speech, and physical therapy in school when you know in your heart it will be in a group setting with therapists stretched too thin with far too little resources that can't provide individualized care (both).
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| Gavin |
Or do you home school. Sink all your time and energy in providing an education at home tailored to their needs with all the accommodations you are already providing and have been since birth. As a parent you are the only person in the entire world that can decipher that special language your child can speak to you either verbally or not. You know when he starts to arch his back and cry like an infant that you need to touch his chin and remind him to "use his words" and give him that auditory and physical cue to remember that he can speak and tell you his problems if you help him slow down. You know you can drive them to therapy a few towns away everyday of the work week for a full hour of individualized therapy with a therapist who develops a personal relationship with you and your family. Do you spread yourself so thin trying to provide a education for them that you feel and know in your heart will be beyond whatever the public school system can do for them or do you give yourself a break, do as much as you can to accommodate them in a public school setting, push, prod, and poke until you get all your goals and individualized needs met on an IEP and hope and pray that while you put your trust into these people caring for your child or children that they will be honest and forthcoming in the realities of meeting this goals and implementing these needs your child has.
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| emotional Gabe |
My husband likes to think the world is fair and just. He would love to put all his faith in the people we send the boys to spend the day with and hope that Gavin is changed throughout the day or given the opportunity to try to use the restroom while at school but I just can't. My heart and gut says that we should pursue education in our home. That we can find a social group outside of public school through activities, organizations, family, and friends.
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| Gavin trying to master the propped sit |
The biggest setback for us as a team of parents in the financial obligation. Sending our children to public school where the subsidies provide free lunches full of allergens that upset our children's stomachs (wheat, dairy, corn, soy), therapists that seem to operate with way below the funds or more importantly the time needed to provide individualized care in a one on one setting, and its free to us. Or do we spend money from our pockets on gas to and from activities and play dates so our kids don't fall behind as much as possible socially, or for materials to teach lessons in an effective manner adapted to their personal disabilities.
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| Gavin standing unassisted for the first few seconds of his life |
Thankfully we have six months to decide but as fast as time moves in the special needs world of doctors and therapy appointments it feels like the blink of an eye.
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