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What Have I Been Doing These Days? (Or: Tales of Medicine, Insurance and Glass-Breaking)

I’ve had a few odd days lately ~ the regular “to-do” list has not even been touched. However, the “have-done” list definitely shows that I’ve been productive!I’ve spent 2 days tracking down the right medicine for one of the kids, and dealing with insurance that won’t pay for one type, pharmacies that cannot get the second type. Finally, just before dinner last night, we found the right kind of medicine AND the pharmacy had it! In this day & age of medicine, it was odd to have this problem.

I’ve also spent several days (not consecutive days) worrying about the back window of our van. Why? Nothing’s wrong with it. It’s perfectly functional, opens and closes as needed, doesn’t give me any trouble. So, why worry? Well, I’m glad you asked!

I have a darling child who plans things for a long period of time, and then actually *does* the thing he’s been planning. At one point, he tried to break the window with something he had in the back seat. Then a couple days ago he asked what it might feel like for someone to break a window. (Why does he wonder these things? I don’t know. He has an intense curiosity about taking things apart and putting them back together, and in so many situations he can easily take things apart and put them back together. However, a van window is not one of the things that can be put back together once it’s broken.) I explained that to break glass you have to hit it hard and even then, it doesn’t usually break, but the person ends up getting badly hurt. I figure if he knows the possible (severe) physical consequences - cuts, bruises, trip to the hospital - maybe it will deter him.

Meanwhile, I’m making sure there’s nothing in the back that would aid his attempt at breaking the window and have moved his seat in the van in an effort to keep him from the window.

I’m also pondering a trip to the dollar store to buy a few vases/glasses that we can break (in a careful and controlled manner) to show that once glass is broken, it cannot be put back together. However, in doing this sort of thing, I’m never confident that it will work in my favor. Ideally, he’d see that it breaks, cannot be easily put back together to be fully functional, and that would be the end of “Glass-Breaking 101″. However, it could have the opposite effect and lead to an increased desire to break things and see if they go back together.

So that’s what I’ve been doing these days: tracking down medicine, pondering “Introduction to Glass Breaking”, and hoping that the van can remain a neutral third party, for it’s own sake! Wish me luck!

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My Son’s Best Advocates

Sometimes in life, we have those brief “a-ha!” moments. I just had one and wanted to share it. It’s something I’ve thought about before, but never worded in this way: “My son’s best advocates”.Having a degree in Education, and focusing on Special Education, I have some knowledge on special needs - a variety of types. Tim has done some reading and has been the recipient (willingly or otherwise!) of facts & stats that I’ve shared with him. As we’ve dealt with needs within our own family now, we are working to learn more about what “they” say may be wrong with our son:*Asperger’s Syndrome
*Sensory Modulation Disorder
*Speech Disorder(s)
*Poor Social Skills
*Hearing issues (due to sensory disorder)
*Developmental DelaysWe’ve shared with our kids about these issues, to the extent that their 11-, 6-, and 4-year old minds can understand. They’ve been great to listen, try to understand, work to apply necessary changes in our household. And, the 11-year old & 4-year old have shared with us, secretly, that they hope they don’t have Asperger’s or sensory issues like their brother. Honest responses from children learning to deal with these issues in their brother’s life.

At lunch today, the kids were each eating a hard-boiled egg as part of their meal. The question arose as to whether our daughter would eat her egg yolk. Our older son spoke up and said, “She doesn’t like the yolk.” I’ve watched them also answer questions about our son and his issues. Usually they answer for him, when he needs their help, but occasionally they answer when he does not need their help.

That’s when it occurred to me: Our 11-year old son & 4-year old daughter are two of our 6-year old son’s best advocates.

They don’t have to answer questions about whether or not he will eat his egg yolk. He can answer that with no problem! However, they do have to answer questions such as, “Where did your brother run off to?” Or, “Can you please help him understand the directions?” Or they explain to him that someone’s talking to him and he should look and pay attention. They are able to tell a teacher that he can’t handle the situation, if needed. They also let us know when he’s mad and has shut himself away in his room. They often tell us when he’s put himself into a time-out on the stairs, not for poor behavior, but because he knows that he needs a break. They are my eyes and ears when I physically cannot be everywhere at one time. Occasionally this looks like tattling, but when you look past the words to the intention, we see that these two are some of the best advocates that our son can have.

People ask us, “Do your other children know about your son’s needs?” Yes, they do. They need to understand that he thinks, works, and reasons differently than most people do. They can participate in activities with him and help him in social situations. He needs them, and this gives them a way to help him, on a daily basis. As we’ve worn our Autism Awareness pins this month, our kids have noticed others have pins on as well. Our daughter (4 years old) asked, “Mom, how come not everyone knows about the blue lights we should have on our houses?” referring to the Light It Up Blue campaign. I explained - that’s why we need to have our lights on, and our sign up, so that more people will know about these very special needs!

Proud mom moment, to see our kids working together to help each other!

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Happy Easter!

Happy Easter! We’ve had a full week! I had 3 meetings this week, most in preparation for this weekend at our church. We recently went through a renaming and re-branding process over the last year, all of which culminated in a launch (of new name & vision) event this weekend at our church. The launch included activities for the kids, live music, food, and an open-house at our church.(I think if you click on a picture it will open larger for you to view better.)

My kids in the bounce house

We celebrated 2 birthdays this week - Mozart & I share a birthday. The post below has some cute pictures of him! Hard to believe I’m a mother of an 11-year old! Our birthday was Friday, the 22nd.

Not to be outdone, Picasso lost his first tooth this weekend - on our birthday! Guess he wanted an opportunity to have yet another reason to celebrate on April 22nd!

First tooth finally fell out! Sorry the picture’s a little orange - he’s particular about when he can have his picture taken, so I have to be prepared and ready in a moment!

Today we had 2 services at church, and almost 300 people total, in both services! It was a busy morning greeting visitors, helping with baptisms - I think there were 11 today! There was also a baby dedication, and a lot of opportunities to catch up with dear friends!

Hope you’ve had a great Easter weekend, and time to reflect on the real Reason for Easter ~ that Jesus is risen!

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Happy birthday to our son!

Today is our oldest son’s 11th birthday! Best birthday gift ever! (He & I share a birthday.) He informed me yesterday that, “Tomorrow is a triple holiday: Good Friday, Earth Day, and our birthday!”

So, happy birthday to our firstborn!

2 months old
1 1/2 years old
2 years old
1st grade
With baby sister

Our happy guy!


Glasses

5th grade

Happy birthday! We’re so proud of you and love you so very much!

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Art from Picasso

Our Picasso loves art. He always has - always has enjoyed coloring, drawing, painting, play-doh: anything that allows him to be creating!When we moved into our current home, he was almost 3 years old. It was around that same time that we were seriously wondering if he had something wrong - maybe developmental delays? maybe hearing issues? maybe he was just a “free spirit”? Doctors told us year after year that nothing was wrong, that he’d grow out of it - whatever “it” was.The love of art continued, as did the “issues”. We have a better handle on the issues now, expanding our initial medical team to now include a therapy team who work on the issues that have been found through evaluations. The artwork continues. Friends ask, “Doesn’t it bother you that he draws on the walls?” Yes. Also, no. Yes, in that it bothers the part of me that knows that I will have to do something about the artwork someday. But that’s the key - “someday”. I do not have to do something about it today.However, it also does not bother me, because speech is an issue for our Picasso. There are many times when there is clearly something wrong, but he does not have the ability to verbalize it. It’s at those times when the Wall Art tends to appear. After one particular episode of Wall Art, I asked Picasso about it.

“It was when I was supposed to be resting. I couldn’t wait, I had to do it right then because I wanted you to know.”

How do you not love that? When there are no words to tell me what the problem is, at least there are enough words to say he loves me. When there are no words, there is still love. It takes an unusual form in my house, but I will take Wall Art because it is communication when there is no other communication!
Here are a few more - I know they’re difficult to see, but he usually leaves art in moderately unlit areas, so getting a picture is difficult.
He’s definitely got some creativity and some amazing things going on in his mind!

P.S. His art is not always limited to Wall Art….

In case you wonder, Sharpie comes off of skin in about a week, with regular washing and patience (as in, there’s just not much you can do but wait for it to fade).

We love our Picasso!

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Who Is Jesus?

Have you ever been asked that question? Maybe it was a child, maybe it was a co-worker. If you’re like me, you sometimes find it hard to give a “good enough” answer.I’ve found a great video that answers the question. It seems to be geared more toward kids who are a little older as well as adults, although our three kids (ages 10, 6 & 4) sat to watch it all and understood most of it. It’s a great resource for a Sunday school discussion, small group Bible study, church teaching tool.Who is Jesus?

I will admit, I’m slightly biased in this case - the presenter in this video is my dad, David Smith. He gives a very clear, concise, easy-to-understand description of Who Jesus is, especially in terms of dealing with people in other religions. Great witnessing tool, great tool for personal learning and growth!

So if someone asks, “Who is Jesus?” let’s be prepared!

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If God loves me, why doesn’t He heal me?!

church2This is a question so many people wonder about/ponder/debate. If God loves me, why doesn’t He heal me?! If God has all the power in the world, why doesn’t He change a particular aspect of our lives? Why doesn’t He cure cancer, or AIDS, or autism? And right now, the answer is - I don’t know. When I think about it, I wish He would…I wish that those who are suffering would not have to suffer. I wish that those whose minds are not clear could have clarity of thought.This question took on a whole new meaning tonight. When you throw developmental issues, trust issues, anxiety, a strong adherence to rules, a definite cause-effect sequence that should not be sabotaged, and sensory issues, into the mix, it becomes extremely difficult to provide a meaningful answer to this question.Picasso has a wart on his toe. That’s a pretty common occurrence these days, for a person to have a wart. I think it’s the first one we’ve dealt with in nearly 11 years of parenting: not too bad! However, Picasso also has extreme sensory issues, anxiety, trust issues, as well as a strict adherence to rules (I did “X” so “Y” should happen), and cause-effect sequences (if I use words then someone listens to me). His wart was very nearly out of his toe and so tonight I was trying to get most of it out. That ended up being a thousand times easier said, than done.

He’s started doing something new in these tough situations - he’s been praying and asking God to help him. What I did not really know before tonight, was that he’s been asking God to heal him - as in “zap! you’re healed!” So tonight, as I was checking his toe, after he had prayed, he got totally out of control. He was flailing (due to the sensory issues), screaming at me, crying, kicking (all due to the reasons listed in the paragraph above) - anything to get my hands off his feet. When he finally caught his breath, he hollered at me, while crying, “I PRAYED AND ASKED GOD TO HEAL ME AND HE’S NOT DOING IT AND I DON’T KNOW WHY HE ISN’T ANSWERING MY PRAYER!”

What do you say? What would you say to a child who is typically developing and can understand a routine conversation? Maybe something like, “Well, God gives us doctors and scientists who can make great medicines for us.” I tried that. Didn’t work. Or maybe, “We need to get this taken care of so we don’t have to see the doctor to get the wart out.” I said that, too. None of it helped. This child was not going to have anything less than a direct answer to his direct question - one which would directly satisfy his frustration/fear/pain.

What do you say in those moments? I quietly let go of his foot. I looked him square in the eye and quietly breathed my own prayer for something that would soothe him, and that would provide a direct answer to his direct frustration. “Honey, sometimes God doesn’t answer the way we want Him to. But I think in this situation, He’s giving you an opportunity to trust Mommy.” A quiet moment…he was reflecting on my answer. I thought I might have succeeded…a glimmer of hope!

Then, the tears: “I’VE BEEN ASKING, AND ASKING, AND ASKING, AND HE’S JUST NOT ANSWERING ME!”

What do you say? How do you explain God and His ability to answer prayer, and His seeming non-answer, to a kid who already sees things so very differently than the rest of us? Is it fair to say, “Just trust me” when I’ve spent years telling him that he can trust God, and now it seems that God is not coming through for him?

The wart is mostly gone - we worked through his anxiety and his fear and pain and let him check his own toe. However, I’m pretty confident in the fact that I did not answer my son sufficiently, according to his needs. I tried. But given all of the issues this child deals with, I don’t know that it’s an answer he can understand and internalize in what he believes to be a crisis situation. I have tried explaining tough things in quiet moments, and it seems to work - but the questions come back in the crisis situations.

How do you make them understand the things they cannot understand - the things we cannot understand? How do you pass along trust to someone who has to learn to trust rather than being able to innately trust?

Matthew 19:14 ~ Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”

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Reminiscent of a Jane Austen novel

Ok, ladies (sorry, men, this post is not for you!), what do you think of when I say, “Jane Austen movie?” Rain and fog? Romantic love stories? Movies with beautiful music? All of the above? My day today is reminiscent of a Jane Austen novel.

I love to watch Jane Austen movies on a chilly, gray day. I like to have a cup of tea and get lost in the romance, the music, the storyline. It’s one of my “ahhh!” moments where I’m relaxed, things are peaceful, and everything is right with the world!

I’ve come to love the music in the movies - it seems to fit so perfectly with the storyline, the gray English countryside. The sweet tones carry me into the movie so that I feel like a bystander, a participant, rather than a far-off observer.

I’ve come to find those moments in my real life as well! No, I’m not a poor lost soul feeling like I live in a movie dream world. I’m usually by my kitchen window, looking out at raindrops and puddles and watching the ducks swim. Midday, though usually full of light and color, is dull and damp as the rain falls. And yet, the ethereal tones of music befitting a Jane Austen movie linger in my ears. I close my eyes. I inhale deeply so as to saturate my soul with the perfection of the moment. I yearn to capture this exact feeling, the weather, and the mood into a bottle to sprinkle on the mundane days that can overwhelm me.

Where does the music come from? I am always stunned at the realization that the music comes from my child - my own personal Mozart. He is patiently practicing another masterpiece. He is providing me with a moment that transports me to my own personal Jane Austen moment!

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Happy April!

Happy April! April 1st, April Fool’s Day - Our Princess learned all about April Fool’s at preschool this morning and has been fooling us for the rest of the day. It’s the same 3 or 4 jokes over & over, so it gets a little tiring, but we continue to giggle and enjoy her enjoyment of the day!

It’s also the beginning of Autism Awareness Month, and as we wait for answers for Picasso, we celebrate and support our other friends who are dealing with autism in their homes. We’re praying and trusting that there will be a cure for these children, adults and their families, very soon! I watched The Talk today, on CBS, as they had a large segment of their show dedicated to Autism Awareness. A quote from the show really stood out to me:
Autism affects more children than HIV, diabetes, and cancer, combined. Yet autism research receives so little funding in comparison to those other critical illnesses.

We are lighting it up blue to raise awareness. We have the blue light bulbs for our exterior house lamps & the lamppost, and we are wearing blue this first day of April!

Happy April from Mozart, Picasso, our Princess & us!

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