Thursday, February 16, 2012
This journey on the unknown highway of FASD has been an unplanned adventure: it wasn’t written on my heart or in my journals.
I simply do not understand FASD.
This Spectrum Disability encompasses so many variables it is mind boggling. While there is much information on what FASD is, how to prevent FASD, statistics scary enough to chill the heart of every parent... there really isn't much at all written along the lines of hope for a parent of a child with FASD.
Truth is a parent is always a parent, no matter what age their child has matured to. A parent always looks at their child as their child. For parents who are raising children with FASD the truth goes even deeper: odds are very high that our FASD child will remain somewhat child like their entire life, not figuratively in a mothers heart, but literally so.
Leading child “experts” such as Michael Thompson, James Dobson, Kevin Leman, Gary Ezzo -- not one has written a guide for the parent of a child with FASD. Search Amazon and find 191 topics on raising boys, but not one of them reaches the parent of a child with FASD.
Our children with these Spectrum Disorders do not fit the mold. Any mold. They are unique like no other.
One day they love on you as if you hung the moon; the next day they accuse you of child abuse. They joyfully comply with the boundaries you have set in the morning, only to have a raging unexplainable screaming melt-down over the very same rule in the evening. They adore and love their siblings, then an hour later blindside them across the back with a giant stick. Whatever I did yesterday that kept them calm, even keeled and healthy...today is sending them into a frenzy.
I am not on a quest for Nirvana yet I have learned about Qigong, castor oil, flower essence and other Eastern medicinal treatments you may not even know existed. I have charted our eating habits meticulously. I have eliminated all things processed, genetically modified and unnatural. I have tracked the phases of the moon closer than my own monthly cycle. I check the barometric pressure and weather forecast every night before bed.
There is no limit to my self education when it comes to my child's well being and training. I will do whatever I can humanly do as his mother to give my child opportunity to reach his full potential. Yet, that is my great unknown: what is his full potential? That not knowing if he will mentally even mature to age 16 is something that can worry me to death. Literally if I allow it.
And so I rest my passion, which is at times all consuming and utterly draining, I take my fears of the unknown, the frightening FASD statistics that tear at my soul and I lay them at the feet of throne of God, and with all my heart I cry out for wisdom. With tears flowing I remind God that He promised in Job 23 that even when I am confused and when God does not appear to be near -- yes, He does know the way that my child will take. And my soul finds rest in this hope: the journey is His, not mine.
Slowly I peel my clinched whitened fingers off the soul my child. I do this often, if not daily. It is not a one time release, for I habitually take back what I have given. So continually I am learning, this place of finding rest is one where I must return to. My soul will only keep this rest as I trust in the promise: He knows the way that my son will take.
Monday, February 6, 2012
I read in James in the morning “if any of you lack wisdom let him ask of God who gives generously and without reproach…”
I prayed for wisdom in the morning.
I prayed that I would be generous and without reproach toward my son today.
I didn’t know in the early morning quiet how desperately I would need that prayer by the afternoon.
It’s raining again today. All day. A wet, cold, slushy miserable rain; my sons body cannot handle a change in barometric pressure. The more miserable and penetrating the rain, the more miserable my son seems to be. Today was such a day for him at school. Such an afternoon at home.
He is in the quiet room, working on writing…and not at all quietly.
His face is red and blotchy and tear-stained. His nose dripping faster than the tears.
He is telling himself angrily “I can’t do it” and repeating “what? what? what?. I can’t write”.
At school he refused to go to reading group and refused to write.
I have him writing sentences while I clean the floors and now sit to journal my prayers.
I have held him quietly.
I have prayed with him.
I have rocked him.
Now he must face his consequence: refusing to work at school means missing out on play time at home and finishing the school work, plus writing more sentences. Correctly. Not angry and sloppy.
I know he can do it. I know is able.
His first sentences are perfect and prove his ability. He thinks his consequence is done with two sentences.
I tell him he has two more to write. His next sentences show his anger.
It has been over 45 minutes of him sobbing and crying.
I hold him again to calm him. I leave him to write.
I sit in my office. My own heart is sobbing, my face is tear stained as well.
I sit. Praying. Crying. Journaling.
At times like these it is all I can do to cling to scripture.