One legal thing that parents of a handicapped child have to do is apply for “Conservatorship” when the child reaches 18 years old.  It is an interesting process that can be done with or without an attorney.  I spent 6 months getting through the paperwork and then we stood before a judge the day before our son’s 18th birthday.  After the headache of the process and the nerve-wracking nature of courtroom procedure for us amateurs, in the end it was really kind of fun.  I enjoyed standing there with the judge banging the gavel and pronouncing that our Down syndrome son was ours for good and that we’d get to be the ones to decide what would happen for him in the future.

That court visit seemed a long way from the early days of county nurse visits where I felt so threatened by an unknown civic system monitoring my navigation through the beginnings of a new way to do an undefinable job (and that I already felt I wasn’t very good at) namely:  parenting!  This time we were on firm ground and we stood there under oath promising to always look out for our son’s best interest and being promised that our decisions would constitute the final word on his care.

conservatorship celebration

Conservatorship celebration. Ice cream all around.

I felt so confused in the early days.  At first we couldn’t take in all that was being told to us about chromosomes and expected personality traits etc.  We were so busy assimilating a third child into our home that we decided to just set all that aside for the first 6 months and then try to figure out what was going to have to be different for us because of his Down syndrome.  

After all we’d been through before and after he was born it was a relief to just let him “live” for a while.  Even later on, when he was 2 or 3 and I felt like I was being peppered by all the “experts,” I finally said “Isn’t it true that handicapped people who just ‘grow up in a family’ are the most capable and happy?  I’m just going to treat him like my other children and let him grow up.  It’s all I can do.”  

This is not to say that there wasn’t much, much, much, I was educated on over the years as far as systems and protocols. But for the most part he simply grew up as part of our family and community.  For better or worse, I didn’t have the sense, or the capability to have a bunch of special charts or vitamin regimens or restricting family routines.  At home we just let life happen, with him in it, and this is the way we’ve turned out . .

I’ve always liked the way of looking at parenting described by parenting author Linda Eyre:

“Children are not lumps of clay that a mother can mold and shape into whatever she thinks would be best. They are seedlings…already pears, pines or petunias. As gardeners, we can add only sunshine, water, fertilizer, time and love in order to make that growing plant the most beautiful specimen of what it was intended to be.”

An ecclesiastical leader of my church also spoke to this mindset at the 2015 World Meeting of Families sponsored by the Catholic Church in Philadelphia.  

“I’ve heard it said that raising children is like growing a garden,” D. Todd Christofferson said. “You can’t force plants and flowers to bloom when you want, the way you want, but you can do much to provide an environment that makes flourishing likely. That’s what we’ve been talking about today. The essential element is not just what we do, but what we allow God to do through us.”

Down Syndrome Days might be different but still sweet

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God planted this boy in our family.  We’ve tried to have fun watching him grow.  We didn’t know anything about raising a Down syndrome child in the beginning but with input from the professionals, and with God’s help, we have grown too.  Now we are at last confident enough in his day-to-day care to stand before a legal magistrate and in effect say “we know what we’re doing – we’ll take it from here.”  

I feel good about that, but I would never say that to God though.  I can only pray that my son will always be in His hands and that His influence will always be with us in our son’s care.

About Jane Thurston

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