For my readers who have the unique experience of rearing children with special needs, you may have heard of the poem “Welcome to Holland.” If you haven’t read it, I highly recommend you do so (with tissues close at hand). I mention this poem because it is such an accurate description of my life’s journey.
You see, all I ever wanted to was to be a Mom, politician, and to own my own business. Two out of three isn’t bad, I’m absolutely ok with not becoming a politician. After a harrowing upbringing, along with terrifying choices and relationships that lasted longer than they should into adulthood, I was finally able to call myself Mom to a child I got to keep at 27. He was a beautiful, peaceful, easy and quiet baby. Full of love and cuddles. A pensive toddler who didn’t have many words but would wow us with they way he organized and built in his play. He would happily sit next to other children, provided they did not interfere with his advanced builds or his methodical approach to clean-up. We learned later that this is called parallel play.
We also learned that for the first two years of his life, due to severe and frequent ear infections, his world had sounded like it was underwater. And so we began the surgeries. First tubes, then tubes and adenoid removal. And to see the look on his face when he could hear made our hearts soar. But then the world was too loud. We watched anxieties rise and wondered about the possibility of OCD. Another term we learned shortly thereafter, ASD. Autism Spectrum Disorder. And “severe, debilitating” ADHD. Delays. Receptive language, expressive language, gross motor, fine motor, IEP… so many new terms that intensive research has caused me to feel somewhat of an expert.
Five years later little sister came along, stunning beauty and morning cuddles. A pensive mind, an impressive memory, an ability to move and manipulate long before her peers. We were so excited that she would not have to struggle as brother will. She’ll look out for him, we decided. How blessed we are. But she seemed to be born angry, and now at age five, she has given us new terms to learn.
When our son was in first grade, his teacher was his first bully. The media is full of horrifying stories of children under the care of public teachers who become incarcerated, abused, even killed. The media-fed fear became overwhelming in conjunction with a teacher who was intolerant and unkind. We began the journey of homeschooling. It was so hard, and so rewarding. It was also absolutely time, no–life, encompassing.
We also learned of the high genetic prevalence for ADHD, ASD, and so many other disorders. As parents, we began our own journeys into our physical and mental health. We stopped accepting that we were “damaged,” or “lazy,” or “failures to launch,” or “bad at life.” We learned that life was hard for us all of these years due to our own undiagnosed, untreated diagnoses. I learned I have narcolepsy. I also learned, once our daughter became school-aged, that narcolepsy, ADHD, chronic health conditions and two special needs homeschool children were not a beneficial mix for us.
So we took deep breaths, listened to the advice of family, friends, and therapists. And we tried the public school system again. Now, though, this Momma has an arsenal of knowledge, and an army of support. Sister is happily involved in a therapeutic preschool while we improve emotional control deficits before beginning school next year. Brother is now placed at a different school through a boundary waiver gladly signed by the principal from home boundary school, because yes, she does remember how they did not have the appropriate support for his level of needs three years ago. The IEP process was so different this go-round. So much easier. There was more of “Mom, what helps your son,” and none of “we can’t do that.” There was support of therapists through quality of life programs. There were recommendations for programs to catch him up.
Finally, when we began to have difficulty with transportation as a one car household of four with Daddy in college, and two special needs children placed into two separate environments, I learned one more term for my arsenal: ITP. That means individual transportation plan. How do you get one of these when your ten year old is not able to safely walk less than a mile unattended, because he will most certainly get distracted, wander and talk to every stranger? You have an IEP meeting, invite the transportation department, and they begin picking up your sweet boy right from the front door.
And as a Mom, you find a piece of yourself again. A little slice of peace and happiness. Knowing you are so blessed that your children can be safely schooled outside of home when so many cannot. And you begin a blog, and a writing business, and you sell bags and create art and do what you love all while actively participating in the support of your family.