Recently we had our first taste of what an IEP would be for me son. He’s had an IFSP (individual family service plan) for the past year and half, and it’s been a process I’ve absolutely dreaded every single assessment. Each time they had to assess his skills, and then the subsequent 10-page report that outlined my son’s deficits, was earth-shattering.
Most parents brag about what their children can do and accomplish each day, but milestones are slow and hard to come by when you’re a parent of a child with developmental delays. You don’t measure success the same, and when you do reach a milestone, even months or years delayed, it’s a huge celebration. In one fell swoop, my joy and excitement for my child is crushed when I read words that say “developmental age 15 months,” “motor locomotive skills 15 months” and “cognitive delay.” It’s heart-wrenching.
I believe in no other part of society are children scrutinized and measured more in the medically fragile and developmentally delayed world. I’ve finally had enough. I’m not going to play the game of being the parent who just goes with the flow and says I’m OK with special education. In fact, I am not OK with special education.
My child is worth more than a test score or an assessment completed to determine his gross motor skills. My child has beat things a typical child most likely will never, ever entertain or experience. He sat on life support for six days. He was on a ventilator and bagged numerous times. We watched him cling to life, and now he’s a little boy who has beat all the odds.
Don’t stick my son on a chart and expect him to be like his peers. He is uniquely who he is meant to be. I believe he is the most perfect child God created and saved, and he deserves more than to be stuck on an IEP and given curriculum he may never meet or understand.
I’m not going to stick my son who has severe apraxia of speech, sensory processing disorder and dyspraxia into a traditional school that expects him to sit still for hours at a time and follow directions. My son is compelled to move and feel the world with his hands and feet. He experiences the world in an amazing way that I may never know. He sees and feels so much more than I know I can, and I want him to have every possible opportunity to open up that brilliant mind.
Inside my son is a brilliance I know won’t be unlocked inside a classroom. It will never prosper or thrive with teachers who forget about his disabilities or teach to a test. He will be one of too many because they are overworked and underpaid. I don’t blame the teachers but rather a system that I believe has become too much about regulation than the child. I’m standing up for my child. Today I’m saying he deserves more.
We dream of a day he will be able to have a job, maybe live on his own and potentially have skills to afford life on his own. We dream he will be able to speak clearly, touch and taste the world, and learn the way he learns best, and we know the only way we can achieve it is by taking control of his education. We are going to homeschool him. It’s controversial, and I’ve heard all the arguments about how it could completely ruin him. But I know it will be his best place to thrive. We can teach him while he swings on his therapy swing. We can do lessons while he plays on his Sit ‘n Spin. We can embrace his creative mind that builds and explores, and take the time we need to help him form his letters with writing.
Reading and writing will never be easy. We will take the extra time to make sure he’s not frustrated, rushed or has homework because he couldn’t finish in time. We are going to help him have better self-esteem by knowing if he puts his mind to it, he can do it. We are going to give him confidence to know that no matter what his prognosis is, he will learn and thrive. We will not let his disability define his chances at an independent life, but we know to get there we have to take a non-traditional way. We know we have to guide him, change our lives and do the best thing for him.
If you are struggling like I did in making this decision, I suggest praying for clarity and hope for a solution. If you know in your heart you know your child better, then have no fear in how it will work out. Have faith and trust that everything that is supposed to be will be.
My son is more than an IEP. He will not have an IEP at our school. He will be in his own school of awesomeness, and I can’t wait to watch him thrive.
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Katie Paulson is a mother to a child with a rare medical condition called panhyppituitarism. Katie is a fierce advocate for special needs families, a blogger, social butterfly, care taker and wife. She uses her gift of writing to help others better help families with special needs children.
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