Is this even OK?

Dad and Ralph were having so much fun last night. But...

Last year in our town, a very young girl with Down Syndrome died of complications from atlantoaxial instability. Her symptoms resembled a respiratory infection, if I remember correctly. Scary. If you are unfamiliar with the term check HERE.

Is this kind of daddy/son play acceptable? Am I being a wet blanket? What do you do with an active kid who is not yet old enough for AAI screening? How could I live with myself if a spinal cord injury was mistaken for a respiratory issue?

I told my husband that I would tape this and ask for feedback. Sorry, I HAD to laugh when Ralph kicked him in the face! So what do you think?

Lydia --> my hero!

Dear Lydia,

You don't know me, but I read your blog today and I've decided that you are my hero. Who ever thought that a little orphan girl in Eastern Europe would be so loved by a young girl the the USA when no one has ever paid any attention to her? And, who ever thought that a young girl like you could could inspire a thirty-something mom like me? Well, you have.

I, too, have a great love for God and for his little ones with Down Syndrome. My heart breaks for the forgotten and discarded ones around the world. Reece's Rainbow is doing a great work and I love this organization.

When I committed to raise $1000 for Maxim for the Angel Tree I was afraid. I was afraid that I couldn't do it. I was afraid that I would let myself and others down when I failed to meet my goal. I was just afraid that it wouldn't make a difference anyway.

Thank you for your childlike faith. What a breath of fresh air! It is what I need. I've been inhibited by what others might think of me. I should only care what God thinks of me. People are going to think I'm crazy! Best wishes and God bless you as you run this race!

Love,

Stephanie

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Please consider whether you can help Lydia reach her lofty goal. 

Happy Birthday Thomas!

I like to call him 'doc.' He is now in double digits! Here is his mad scientist look:


He is a very tidy and organized boy, but he wasn't always that way!

He has incredible eyes. I call them doll eyes. Remember the sparkly glass eyes in the old fashioned dollies?

He's smart, too. He figured out how to start up this four-wheeler at the age of two! By the way, do you see a little bit of Ruby in this face?

I love you Hank, 'doc', doll eyes! Hope I didn't embarrass you too much!

Sensory part II

As an old friend used to say to me, true originality is concealing your source! With that said, I'm borrowing heavily from others and mixing in my own experiences today.

Have you ever been extremely tired, but needed to drive somewhere? Either on a long trip, or just trying to get home late at night? What do you do to stay awake? What do you do to keep your focus?

Turn up the radio. Sing.

Roll down the window. Turn on the AC.

Drink something. Chew ice.

Eat something. Crunchy Cheetos? Even better - sunflower seeds which keep your mouth busy!

You are giving yourself sensory input in order to stay focused on completing a boring task!

Now think about a child who is losing focus in school. Could a little sensory input make a big difference? Do you know any pencil chewers? Hair twisters? Toe tappers? We all do these things from time to time. Some of our little "things" are harmless but some are destructive and attract the wrong sort of attention!

The trick is to find ways to provide enough of the right kind of sensory stimulation without destroying anything or making a spectacle. I've heard lots of good things over the past few years about having kids sit on exercise balls instead of a typical chair. That makes me think back to of all the boys in school who would tilt their chairs back and rock on the two back legs. I used to think they were being naughty and dumb. Maybe my teachers thought the same thing because they would always get into trouble for this. Now it's clear to me that they were just trying to stay focused and needed the kind of input that could easily (more safely?) be provided by sitting on a ball.

This makes me wonder if many of the ways our children get into trouble, or just irritate us, are examples of sensory needs not being met. Maybe we (*I*) should view this as an opportunity to help them find appropriate ways to meet those needs.

Try chewing on gum, a straw, or some food-grade plastic tubing (which you can cheaply obtain from any hardware store) instead of eating your shirt sleeve. Or chewing up your pencil. Or chewing your hair. Ick.

What about the child who cannot tolerate certain sensations? Like shirt tags, snug clothing or haircuts. The obvious answer might be to avoid or remove the offending sensations. *Disclaimer - I'm just thinking out loud here, because I'm NOT an expert* What about providing more and different input? Counter-intuitive?

I have heard it suggested to give a reluctant child a haircut while they are sitting IN a tub of rice or beans. That reminds me of what I tell my kids when they have itches or they bug me for snacks between meals - a dog in the hunt doesn't feel the fleas! 

I'd love to hear your ideas.

I learned something that I already knew.

As children we learned about the 5 senses in school. You know, hearing, sight, smell, taste and touch.

Today, thanks to Sarah Bommarito of The Therapy Spot, I learned about 2 more senses: proprioceptive and vestibular. Of course, us moms really already know about these extra senses. It's instinct. But sometimes it is good to know there is a name for those things that you've been aware of but couldn't put a finger on.

Proprioceptive. Sensors located in the joints and tendons enable a person to know the location of each part of the body. The Romberg test is a test of proprioception performed by standing with feet together with eyes closed. Those with proprioceptive loss, or lack of development, will be able to stand still with eyes open but will sway or fall with their eyes closed because they are unable to keep their balance.

Pressure on the joints and tendons provides input to this sense. A newborn baby with arms and legs flailing is unsettled and in desperate need of proprioceptive input. This baby can be calmed by providing input in the way of swaddling. Moms have done this for ages! Some people find that they sleep better at night with a heavy blanket (providing input).

Vestibular. Sensors located in the inner ear facilitate awareness of the body's position in relation to its surroundings. In my mind, I simplify this sense as one of movement. As moms, we know that our babies are calmed by movement (vestibular input). Which of us has not done the "mommy sway" as we attempt to calm a baby in our arms? Oh, and keep that shopping cart moving, right?!

I encourage you to look into different ways to satisfy your child's need for sensory (all 7 senses!) input. If you are dealing with a child who has suffered sensory deprivation due to hospitalization or institutional care, seek assistance from a therapist trained in multiple sensory integration. 

The other day I wrote that no one is too far gone and no one is unlovable.

It's the truth.

But do I believe it?

Am I willing to live my live in a way that shows that I believe it? What could possibly be holding me back?

Check out Katie in Uganda. She is a single Mom and has adopted 14 children. Oh, and she just turned 21 about 2 weeks ago. At first, I'm tempted to say that she is an amazing woman. A real saint!

But, then I recall what people have said to me..."oh, how do you do it?" and "you are a real saint!" or "I could never do it." (Remember my what-not-to-say post from last month?) And it dawns on me that when people say they can't, they usually mean they won't.

So here I am tonight wondering what I would and would not be willing to do. As Katie said,

"As believers, we should already KNOW our calling; it is to love the Lord and love our neighbors by caring for them in whatever broken state they are in. When He said that "the poor will always be among us" I don't think he meant that as an excuse not to worry about it but as a reminder that there is ALWAYS a neighbor, no matter where we are, in a worse condition than we are. I can only believe that God created us to make this world a little better. That he designed us in love to show that love to others. I just don't know what everyone is waiting for."

What am I waiting for? It is always possible to do the will of God.

Wordless Wednesday