It’s Not All Strawberries and Sunshine

It’s pouring down rain here. Again. Summer hasn’t quite arrived in our little corner of the Pacific Northwest. We’ve had a day or two of 70 degree weather…other than that, it’s been in the sixties and cooler at night. Our house is still chilly…in July. We heat with wood, and this is the time of year when we need to lay in store our wood for the coming winter, so we are huddled around in sweatshirts sipping warm drinks. In July.

But here are some photos I never posted from one of the warm days we have had. So enjoy. And I’ll pretend this is what the weather is like right now.

And if you’re  wondering why Apollo is dominating the photos, it is simply because, for the most part, he was the only child near enough for me to photograph. See those little dots? Those are Baker’s Dozen children swimming in the water.

Ah. Yesterday was one of those days. In the end, it was productive. We picked 76 pounds of strawberries, washed them all, froze some, made freezer jam, and just this morning we had crepes with fresh strawberry syrup. Yum.

But yesterday was a rough day. I nearly called off strawberry picking due to behavior issues (seeing this morning’s rain, I’m so glad I didn’t). And Apollo most definitely did not enjoy strawberry picking. (Photos coming soon. Of course!)

It’s no secret that I’m raising some children with some serious special needs. In general I choose not to post about it much- mainly because I don’t want my children judged by their behavior here at home. Our home should be a refuge for them.  Much of their behavior is out of their control caused by things that happened before their very birth. Just as Apollo is living with the effects of his heart not forming correctly during his fetal development, so Avi and Mordecai are living with the effects of their prenatal environment. No one blames Apollo for his malformed heart…nor do I blame my adopted children for their issues. But just as surely as I hook Apollo up to a pump four times a day to feed him, I deal daily with behavior issues from my children that were caused long before their birth.

I had a child spend the afternoon in his room trying his very best to destroy it. He couldn’t slam to door…because he broke it before our strawberry picking adventure and his older brothers had to take if off the hinges.

So instead he found more creative ways to wreck his room. I don’t suppose you need all the details. Let’s just say he’s quite creative.

And now I am faced with a day of pouring down rain. And contemplating moving to  Florida – though I don’t have Chuck sold on that idea yet.

And I really didn’t intend for this post to turn in the direction it went, but obviously that’s where I am this cold, rainy morning.

{I’ve slipped back into second place for Top 25 Photographer Mom Blogs. If you enjoy my photos, could you click over and give me a vote? No need to register or sign in. Thanks!}

 

 

Plastic Surgeons, Knives and Post-Hospital Doctor’s Visits…

Photo by Tilly…who is an incredibly talented nature photographer. Check out her nature photos all taken with a Canon Rebel and kit lens!

Ah, yes, all in a day’s work for a busy homeschooling mom, right?

It started Monday night when a child alerted me to the fact that a certain third grader brought a knife home from school. It is large-ish, unfolds like a pocket knife, but actually folds out into a box cutter. His “friend” gave it to him. If you don’t live in the United States, just let me tell you, we have a zero-tolerance policy in schools for any weapons.

So yesterday morning, when I called to say Mordecai wouldn’t be at school because he had a doctor’s appointment, I also had to mention he came home with a large knife. Ahem. 

And then after cleaning up and getting kids started on school work, I had to head to the plastic surgeon with Mordecai. I’ve mentioned a few times that he was born missing some of his fingers and toes (he had surgery on his hand twice as a toddler). Well, he has a fingernail really bothering him where he has only part of a finger, and so it was time to head back in.

The thing about a plastic surgeon’s office is, well, they do plastic surgery. And let’s just say not all of it is to improve mobility on partially missing fingers. It’s an odd place to sit with a nine-year old boy.

We were, of course, called back nearly forty minutes past our appointment time. I won’t bore you with the details, but Mordecai will be having surgery again in the near future.

After that appointment I rushed home to eat lunch and get Apollo down for nap…so I could wake him up for a post-hospital visit with our family doctor.

Dr. H was thrilled that we finally had answers to Apollo’s health issues…and even more thrilled with the doctors from Children’s he talked to. He said, “You really met some nice people down there. I was so happy to read their notes and realize they had really listened to you. I had a great time talking to them. I got the sense that Apollo was a kid they just really, really care about…”

Just exactly what I needed to hear. He is in full agreement that the feeding tube is the right choice for Apollo. Toward the end of the visit I said, “So, I’m assuming you have other patients with g-tubes, right?” He looked and me and grinned and said…no. I said, “So I assume you’re really excited to learn about them, right?” To which he said, “Yes, I’d love to learn about them”. He said he has worked with patients in the past with g-tubes and is more than happy to be a resource for Apollo.

Then I rushed home, fixed dinner early so the boys could go to Scouts.

And this morning, I’m running around like crazy, getting ready for yet another stay at the Children’s Hospital.

Living With FASD

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I didn't intentionally leave it out the other day…or if I did it was subconscious. When I was blogging about my struggles with Mordecai I was focusing on his educational needs and how I could meet them, not what the root of the problem is. And to be honest, I've spent years trying to "protect" him. I don't want him to be seen as "that boy with FAS"…. But the reality is he was diagnosed at age 2 1/2 with Static Encephalopathy Alcohol Exposed. In plain English, that means: permanent brain damage due to alcohol exposure…in older language he would have been diagnosed with "Fetal Alcohol Effects" as opposed to full-blow "Fetal Alcohol Syndrome". They have since updated the terminology even more and now put it all under the umbrella term: Fetal Alcohol Spectrum Disorder. He was evaluated down in Seattle by the experts in the field. These doctors know more about FAS than anyone in the world. 

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Unfortunately, being an expert in FAS or FASD doesn't mean they know how to teach him. It's a bizarre world inside Mordecai's brain, I'm sure. Somedays are good. He has self-control. He remembers things. Schoolwork comes together…more often than not though, he's struggling to retrieve the right word, he can't remember how letter sounds go together to form words, and his anger and rage get the best of him….he's always half a pace behind…

Behind Jubilee, who is two months younger. Behind Hezekiah, who is a year and a half younger…and on many days, behind Tucker, who's three years younger. It didn't used to bother Mordecai, but as he gets older I'm pretty sure he notices these differences more and more. He can't read his Cub Scout book and rarely has the mental endurance or patience to finish the requirements for a badge…

Day after day, Mordecai struggles to keep up through a fog…I appreciate all the resources you blog readers gave to me when I blogged about Mordecai last week…one quote I read from one of those blogs was something like: a baby with FASD will grow up to be a kid with FASD who will grow up to be an adult with FASD. And that statement, no matter how true it is, makes me sad. I want him to outgrow it. I want him to have a healthy brain and a fair shot at life. 

But life of course, isn't fair. 

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No one really knows how to help these kids…if I knew of a program that worked specifically with kids with alcohol damage, I'd have him there in a minute…

Instead we wait.

Wait for someone to come up with a great, new program that works.

Wait for him to finally "catch on" to reading. 

Wait for him to remember the difference between "breakfast" and "lunch".

Wait for him to learn the difference between "13" and "31".

Wait. Wait. Wait.

And hope that someday, by some miracle, he is a successful, happy adult.