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It’s 1:30 am and I’m wide awake. Insomnia has set in and it is only partially because one of my children is apparently coughing up a lung. The rest of my late night wondering has much more to do with my Ewan than anything else. Ewan, the child behind the Ewanisms and source of hilarity and profound autistic introspection. Ewan, the child behind my source of amazement in what being autistic really means. Ewan, the child who gives me a new found respect for what it means to live in a neurotypical world. Ewan, the child who often leaves me in awe at what he can do. Ewan, the child who has me up at 1:35 am.
For our family, rightly or wrongly so, the world has spun somewhat on a Ewan axis. For the past 8 years life has revolved around therapy visits, doctor visits, social stories, schedules, and more PECS symbols than you can shake a stick at. For the last 7 years life has also revolved around meetings. The IFSP meetings held in my living room around cookies and coffee. The IEP meetings held in classrooms, boardrooms, and sometimes the various closet space huddled around thousands of papers and still more cookies. Throughout the years these meetings have been a significant source of stress for this family. Big meetings, small meetings, just sign this or that kind of meetings—all have a certain level of significance to this child’s life. What may seem small and inconsequential to you, weighs on my mind and on my soul like a 10 ton boulder. What may seem like merely the tedium of a 9 to 5 job to you, is really the life and future of my son. One choice, one decision, one check mark on a form to you, is really this child’s whole trajectory in life.
These meetings have brought out the entire spectrum of human emotion in me: from anger to terror to elation to eternal despair, I’ve felt it all in any number of meetings. Afterwards, the regret and feelings of guilt sink in and you’re left with the twin punishing thoughts of ‘Did I do enough for this child?’ and ‘Could I have done more?’ These meetings have tested my faith and my reserve in ways I never thought possible. Raising a child with special needs is today less about understanding the nature of the disorder and more about understanding the complexities of state laws and educational systems. It’s not enough to know everything there is to know about what it means to be autistic, there’s an entire chapter of your life dedicated to understanding what the other side of the table has to do, wants to do, refuses to do, and cannot do. And it can be both exhausting and draining.
It seems impossible that a mere two hour meeting can hold such power over your life and yet it does. Before the meeting, hurling in the parking lot seems like a good idea and after the meeting, a stiff drink definitely seems like a better one.
For me, in its most elemental form the IEP meeting and ensuing relationships has come down to trust. Trust that we are doing what is best for this child. Trust that others will keep this child first and foremost in their thoughts amidst a sea of other children. Trust that others will care for this child in ways that equal my own care. Trust that this child will be safe and kept from harm. My own personal issues come partially from unheard levels of control freakishness and partially from an experience that has left its own scar upon my psyche. When Ewan was five, he unknowingly to the teachers and staff, left the school building and was found a mile or so down the road. He had crossed umpteen lanes of busy lunch time traffic and was found without a scratch only by the grace of God. Since that time Ewan has been blessed with probably the one person on the planet I could, would, and did entrust my son to for the past 3 years. This person has been the sun, the moon, and the stars to Ewan, to me, and to my husband and I cannot imagine having a sanity left intact had she not been placed in his life.
And as of last Friday when we moved cross country, the sun and the moon and the stars has eclipsed out of our life and it has not been easy to leave our universe some 1,000 miles to the northwest. Now, we are in a new school, new town, new state with its own new set of systems, laws, and regulations and we are left scrambling in the dark searching our way through the shadows to find the light once again. I thought the hardest thing would be to leave Ewan’s cocoon of safety and trust and relationships back home and I’m finding that the hardest thing is starting again and taking that giant leap of faith towards something new. Building trust, building relationships, creating a future and writing a new chapter is far more difficult than closing an old one.
And in the meantime, I continue to not sleep. Too scared to sleep, too tired to think, too worried to breathe. This is the stress that follows you in this special kind of life, from birth to adulthood. The questioning of every decision you make no matter how large or small. It’s not Welcome to Holland anymore, it’s Welcome to Insomnia.
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