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.
I wanted to shout.
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.
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.
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.