Thursday, September 26, 2013

Hide and Seek

You know the game you play with babies where you hide a toy behind the chair, and then show it’s there and never disappeared.  Or place it under the rug so a suspiciously toy shaped bump is created. Or when you play hide and seek. Or even peek-a-boo. Blu has never triumphed in such games. If he can’t see me as soon as we played hide-and-seek he’d cry that I had left him. Picture a 5 year old, the size of an 8 year old, crying because he can’t find me hiding behind the clear shower curtain. Or crying because his stuffed animal is under the blanket at bedtime and he can’t find it, so he thinks it ran away and left. Gone forever.

Blu never seemed to grasp the fact that just because you can’t see it, doesn’t mean it’s gone. He was always a skeptic. It took serious work to make him believe in Santa Claus, or even the Elf on the Shelf. Honestly, I wouldn’t have cared, if it was just who he was, and not a developmental struggle. Now he believes in too much! The other night dark clouds were floating during bedtime, and he convinced himself it was the boogey man’s horses from The Guardians movie.

The point- when you’d child isn’t the developmental norm you can experience troubles you never imagined, and that other parents of neurotypical children don’t believe. When someone says to you “They seem normal enough to me” Don’t slap them upside the head or punch them in the face. Just visualize doing it in your head, and know that you’re not alone.

Friday, August 30, 2013

School Days School Days Dear Ol Golden Rule Days

Happy Back to School Season! I think everyone I know is officially back in school! We started our homeschool last week. Over the summer we had done almost daily reading lessons and saw some serious struggles in Blu. While he is two young to diagnose anything he shows several markers of dyslexia. It may go away as he learns more, but we are also preparing our selves for a future diagnosis. We agreed that while we love unschooling, and it was working on most subjects (seriously, as him almost anything about animals, or just let him wow you with random educated announcements) we knew he’d need help on some more serious subjects.He also has a habit of purposing avoiding anything difficult. With he speech issue if he couldn’t say a word, instead of practicing he’d start the sentence over with a whole new word!
So we know that it wouldn’t do him any favors to wait and then find out that he has a problem. The sooner you get help the more it actually helps. If we kept unschooling and he still couldn’t read at 10, 11, 12, 15, it would be that much harder to help him learn to cope with any issues he has. Which is exactly why I didn’t expect unshooling to work for us. It WAS very good and helpful to just relax for a year and really see some good effects of unschooling, and also just to relax a bit about school in general.
After we decided to “do school” things got stressful. First, we were planning to use a boxed curriculum from Winter Promise, then I was going to use Galloping the Globe, (bought the main book and everything.) Then I was going to make a curriculum from scratch, AND THEN I decided to do Charlotte Mason, a style I have loved, identified with, and respected for years.  
We are using a free curriculum found online called Higher Up and Further In, minus the bible resources. The website has lots of great articles about truly implementing Charlotte Mason as well as a tab at the top for the free curriculum, and there is a Yahoo group for support. We are modifying it some, because I promised Blu a focus on animals and nature. So instead of some of the suggested work I am using animal work instead.
So far it is having overwhelming results!!!! We had been stuck on step one of  a Orton Gillingham reading method for years. We did a phonics program that died a horrible death, and it’s a really popular, really good one.  And then after weeks of daily practice with Dick and Jane Blu still struggled through every word, but with the method Charlotte suggests he can read “Elephants” on sight!" And he knows “walking, the, trails.” He has some other words he is getting, but isn’t 100% on. On some subjects it’s like his mind is a trap that can only hold so many things. He can remember what he ate for dinner at a restaurant 3 years ago on vacation, but starts to struggle once more than 5 words are in his mind. Seriously?!?!?!?!??!
I started last week with a slow approach, just 3 subjects Monday, and then expanded with one new subject a day. We also did some first day of school celebrations, including a German school cone!
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I can’t take pictures of our reading lessons, or schoolwork, because we REALLY need to have NO distractions if we want to get through our day. I don’t even answer the phone, and have told people not to call before lunch. I will post soon about our daily schedules, and what we do for reading lessons! Stay tuned!
I’d love to hear about how your year started out in the comments below!

Saturday, July 6, 2013

Shave and a haircut! Two Bits!

A few months ago Blu got his first fairly generous haircut. The results where pretty drastic. It seemed drastic at the time, but haircuts to me always do. Recently when I was showing a pre-haircut picture I said “WOW! that was a LOT of hair!!”

Here is is after his cut, dried, fluffed, and adorable.


Here he is RIGHT after the cut. His curls are so tight when wet it looked like a serious cut.


And here, is all his hairy glory is the most recent pre-haircut picture I could find.

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While I don’t miss the washing, or detangling, Boy do I miss that hair!!!

Friday, July 5, 2013

Egyptian Rivers

Denial, not just a river in Egypt. Although to be fair I can’t say it was denial exactly. Wishful thinking perhaps? Falling victim to an imaginary world of my own mental creation?


Things were getting easy.  He had an evaluation with his county speech therapist and special early ed teacher in March. He got out of the general special needs class! And we agreed he could be finished speech when the school year ended, since he gets no speech therapy when we begin homeschooling next year, and he really is pretty much done. Then I talked with his OT and she said she thought she may graduate him by the end of summer. I was ecstatic! I thought we may be approaching normal. Approaching a reasonable calm after years of therapy. I thought we could move past this. I started another blog, something that had nothing to do with therapies, and issues. (I gave up on it, thinking I should come back here, begin accepting our family issues again)  I started thinking maybe I could start a business, something I haven’t been able to do since Blu outgrew sitting on my lap and nursing while I worked. I thought “here we go! good stuff coming our way!

Now, I know his situation could be much much much worse. But kids deserve to be kids, without balancing therapies every week.  Even just one therapy a week is way more than a good kid deserves to have. Two to three is really just to much to be fair. and those kids who need more, well it just breaks my heart for them.

I got it in my head that when he graduates out of all his therapies he’s done, over, ‘normal.” But the simple fact is that it doesn’t work that way. He still has mild speech issues after leaving speech, reinforcement at home and time is all that can help him. He will still have sensory issues, forever, even if he creates his own system of coping techniques. He will never be “normal” even when he appears it to the outside world.

If you have a child with any special needs you know the evals, they happen. If you don’t know let me explain. Kids get evaluations to enter a program, to progress in a program, to leave a program, and periodically just checking things out or for birthdays. Blu only has moderate issues and his “therapies and evals” folder and is well over an inch thick. Some programs give you a single sheet progress report after every visit. Most evals are at least 8 pages long, usually back and front. Evals also can be long to go through, anywhere from 30 minutes to several hours of straight work and tests. Answer questions, draw a line, try this movement, cut this shape, say this word and this word and this word, what is this letter, etc etc .

Since she expected to graduate him his OT required an eval. She split the work up over several regularly scheduled visits, with a few visits lasting an extra 30 minutes. Then after we returned from vacation we got our 8 page report. Mostly he did fantastic! Quite a few things were in the normal range. Yay! But those that weren’t well some of them really really weren’t. Some skills he came in at a year or more behind.

Then, here at home, we started a phonics program to learn to read, and his issues became fairly obvious, and it was definitely obvious that he is not, in fact, approaching normal. I started all over. Rereading books I read in the beginning, learning names of conditions I had forgotten about, reminding myself exactly what we are dealing with here. So I brought my concerns up with the OT. I said openly that I am nervous, concerned, when he is finished there it doesn’t mean it’s over. It doesn’t mean he’s fine. Where do we go from there? So we discussed it, his eval results, my concerns of a certain diagnosis I expected he had, where do we go when he finished, should we get a doctor diagnosis or not. We agreed he wouldn’t finish yet. When she was treating the whole slew of stuff he had improved so much he seemed ready, but the eval really brought to light how behind he is on some things, and she doesn’t think they’ll be better by fall.

Now we have a new issue to add to the list. While it isn’t doctor diagnosed it’s for sure, and an official diagnosis just means we spend a lot of money and time getting a doctor to write it on paper, even though it doesn’t change a thing for us, or help us in any way.

Dyspraxia. His initial speech issue was no doubt apraxia, something every outside therapist said for sure, but county therapists didn’t even try to diagnose. Now his motor issues are no doubt dyspraxia. Apraxia and dyspraxia are essentially getting your body to do what your brain is thinking, and coordinating all your parts to work together. Apraxia is more generally speech, while dyspraxia is more generally your body, but not always. Apraxia, Dyspraxia, and Sensory Processing all involve neurological synapsis, getting your body to all follow the same commands.

So his therapist said dyspraxia, for sure. Eventually there may be dyslexia, in which case that $1k and hours of evals will take place. We’ll end up with a diagnosis list several lines long. But for now, we’re just doing what we need, and the doctor diagnosis does nothing for us since we homeschool. We’ll probably be adding a few new therapies too. Oh Denial, thanks for the kick in the face.