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Storms and Struggles

This blog has remained quiet for many  months.  For many months, or years, or whew it’s been a long time, we have been travelling the waves of a storm.  A storm that has been brewing for three years, and at any given time, opens a rage of thunder on our family.  It is a storm that leaves me lonely and desperate most days, feeling a sense of helplessness, feeling a sense of hopelessness. 

And then I read this:  http://copperlightwood.com/2013/08/walk-the-line-some-thoughts-on-boundaries-trust-and-attachment-part-2.html

I wanted to shout.

YES!

That is my life.  There are actually others out there that “get” it.  I never would have imagined that other’s being so nice to my children would cause so much strife.  People mean well, they do, but they have no idea.  Our kids have some serious attachment issues.  I didn’t realize it at first, at first I thought there was just adjustment, I mean, aren’t kids with Down syndrome not supposed to have those issues?  I think I read that somewhere.  Three years ago.  Before the storm.

Yet, every single second of every single day is a struggle.  One of my children is much more mild about it, and one fights me all day every single day.  I am weary.  I am tired.  I am determined to never give up.  Our lives have become something vastly different from what I had ever imagined.  We don’t go out often, people don’t come here often, visiting family is torturous.  Oh, our kids are fantastically well behaved little charmers with others.  Leading others to wonder why on earth we are so strict, why we have so many rules, why can’t they just hug and hold and waller those cute little people…..

Because after the “fun” comes the tornado.

That one hour of “fun” will cost us at least one week, probably more, of regression, tantrums, disobedience, aggression, crying, whining, potty training mishaps (that usually never happen otherwise), meal time disasters, and so much more.  One of my children spends their entire waking (and sometimes sleeping) time testing the boundaries, attempting to make their own rules, on the edge of wild untamable disorder every single second.  The other teeters the line of reality and some other universe.  They are willing to work, talkative, happy to eat healthy, and usually not stimming, but one trip out, and it’s all over.  We start over.

Square one. 

Back to stimming, potty training out the door, no longer willing to do chores, crying about everything, unable to walk 5 feet (this child who can run, climb, and jump),  gagging or causing themselves to throw up anything healthy, and complete baby talk, no longer trying to communicate.  They revert to an infant like behavior lost somewhere between this world and the other.  The other world that is there, waiting to suck them in, hoping to catch their mind and never let go. 

That other world and I are at war with one another.

The one child, never receives a “real” hug, never feels authentically safe.  They are capable of turning on the charm, in hopes of manipulation, and when they do not get that success, watch out.  They are then very, very MAD. 

I have felt so lost, I didn’t expect this from children with Down syndrome.  I expected and prepared for so many other things, but never this.  There are no therapists around here, we’ve read all of the books (although there are no books to address kids with attachment disorder and developmental delay), and so we piece together what he hope will work. 

We take two steps forward.

Five steps back.

Three forward.

One back.

And I pray.

Each morning, Lord let me love them better, help me to weather the storm, help them to feel better.

It is tough.  I very much dislike having so many rules, so many things that we have to do, so much restriction.  I don’t like being the “mean” parent, and looking so foolish to every one else.  Although, every one else doesn’t live in our home, and everyone else doesn’t deal with what we do. 

So the blog was left quiet, I was stuck, trying to figure out how to get up and live life, when our lives are so turbulent.  We just keep putting one foot in front of the other, wake up each day anew, praying constantly, and hoping for progress. 

It will happen.

God has a purpose for us, our situation, and He works all things to our good.

6 thoughts on “Storms and Struggles

  1. That sounds very tough. Do you guys have access at all to attachment therapists or trauma specialists in your area? Have you read any of the trauma-related adoption books, like Parenting The Hurt Child?

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  2. Molly we do not have attachment therapists in our area, I have read Parenting the Hurt Child, the Connected Child, Beyond Love and Logic, and everything else I can get my hands on via books and web.

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  3. Have you read the blog myspecialks.com? This family struggled with RAD with their adopted child with Down syndrome. She's removed most of that struggle from the blog, but she would be a great resource as she's walked that road.

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  4. Kisha, I am so sorry that your family is struggling with this – no easy answers, but just supporting you in continuing to meet your children where they are. It has to be so hard, when others see an almost entirely different child than you encounter back home – and for you to recognize that the sweet, pliable, affectionate and friendly “public” children are struggling so very hard, and are so very afraid to trust, to let their guards down, to comply…for fear of losing their very selves. Yet you are seeing this, clearly, and I commend your determination to see it through, so that your children can eventually allow their true selves to flourish and those superficial, surface not-really-selves to be left behind, as outgrown and unneeded.

    Have you checked with the UK Children's Hospital about attachment therapists? I think they do have a small international adoption clinic – can check with a friend whose husband is a doctor there if you like.

    Sending best wishes to all of you – you'll be in my prayers.

    Susan up the road

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