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Are You My Mother?

December 24, 2011

Dakota people would have agreed with Hillary Clinton, who popularized the saying, “It takes a village to raise a child.”  Before they encountered Europeans, Dakotas, to use today’s idiom, were all on the same page about what it meant to be Dakota. So Aunties and Grandmothers and Mothers  and Older Sisters were interchangeable.

In my part of world today, “It takes a village to raise a child,” smacks of child-raising by committee. The people in my geographic “village” do not share the same values, are not guided by common objectives, do not have the same end point in mind.

That leaves children still very much need parents. Specific parents given to a child by God. God doesn’t work on a model that considers family units to be as interchangeable as Lego bricks or draw families at random out of cosmic hat. He chooses specific parents to advocate for their unique child.

Yet parents rarely can do it alone, at least not raising children with special needs.

Last weekend, I left Papa in charge of breakfast and retreated to my quiet place to think through our “Who to Thank This Christmas” list one more time before heading out on errands. The number of people in Joy’s support network amazed me: 15 PCAs, teachers, paraprofessionals, and therapists we  see every week. Faith’s teacher also made the list as did Mercy’s speech therapist.

But Hope’s corner of the page was empty. Sitting there with Joy’s list, I realized that my husband and I have no one to resort to for support and ideas for Hope –beyond a  growing network of other parents. There are no humans besides him and me holding her safety net –if you’ll grant that living with FASD is a high-wire act.

A year ago, when we were waiting for our FASD evaluation appointment, I imagined that we’d have made some headway by this time. That with a diagnosis, as happened with Joy’s, ready-made systems and networks would materialize. We’d plug into those we chose, begin learning the territory, and be closer to coping competently than we were before we were sure what we were dealing with.

Instead, we’ve faithfully spent the past year working our way down the list of therapists and specialists recommended by the FASD clinician. Paradoxically, we’ve felt ever-more isolated as we either eliminate, or come to understand the limitations of, the therapies and specialists we sincerely hoped would help.

I empathize with P.D. Eastman’s fledgling who fell out of the nest and asked each thing he saw, including a steam shovel, “Are you my mother?” Except my question is, “Can you help us?”

“Yes,” said the OT. “But only so far.” (We need more.)

“Yes,” said the meds, “if you can live with the side effects.” (We could not.)

“Yes,” said the ILS, “if you have an hour a day to give for a year.” (Still at it.)

“Yes,” said the sleep doctor, “if it gets worse.” (Saved card.)

“Yes,” said the psychiatrist. “But she does not have a problem. You do.” (Gleaned insights. Moved on.)

“Yes,” said the school district. “Give us a try.” (We are, staring in January.)

“Yes,” said the family therapist. “FASD is tough on everyone. Can I pray with you?” (Thank you, God!)

So as of last Tuesday,  we have another human being standing with us to support Hope. I am not placing much confidence in family therapy to change the core features of FASD. But certainly, every one of us will benefit from being able to process the growing load of stress we’re experiencing, and hopefully strategize some ways we can better support each other as we all support Hope.

As grateful as I am for God’s provision, this isn’t our last resort. Thanks to the underground network of moms rasing kids with FASD, I also have a  referral to a local therapist who is said to excel in the behavioral management of adopted kids with complicated diagnoses.

Maybe next Christmas, Hope will have more people in her corner helping us, her mom and dad, hold her net.

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2 Comments leave one →
  1. December 24, 2011 11:59 pm

    Well said friend…love the idea of our underground network 🙂 🙂 Praying for your family with love!

  2. December 25, 2011 8:28 am

    I think we have been traveling the same road. We have also taken Little Miss to all the therapists and the school – the specialists, the developmental pediatricians, and the behaviorist — and to some extent, each of them has helped her. But there are always limits. Those limits have not been satisfactory.

    And I too look for that “magic diagnosis” like a light at the end of a tunnel to help guide my way — and I secretly know that it really is not going to help us in the grand scheme of things (our evaluation appointment is in March).

    And, likewise, I have been slowly digging my way into that “underground network”… finding connections and learning everything I can. For that, I thank you. You are my first connection to this network and you have been instrumental in getting me once again on my journey. Merry Christmas to a new friend, and thank you!

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