Hello, let’s talk mainstreaming

Hello my lovelies! It’s been a while since we’ve talked. Never fear, I’m still writing.

I started taking writing classes and it is definitely keeping me on my toes. It has a secondary affect, which could have been adverse. My 11 yr old son is being mainstreamed in English Language Arts (ELA) and math. I am hopeless with math, but English? Who Ohio! I’ve got a degree in that!

This is important. If you have a child going from Special Ed to Mainstream you need to listen carefully.

His teachers are phenomenal. But most classes in the SDP range are focused on reading, writing and spelling. Parts of speech, well… So we have a child that has fought his way through everything and is ready to cross the threshold hold but doesn’t know half of what’s being asked of him. Not because he’s dumb. Not because of bad teachers. But because the program that got him this far didn’t teach him those particular things.

He also has a problem with short term memory. Don’t feel bad though, his brain goes so super fast, he’s able to convert to long term memory. It might take him a bit, but he’s able to do it. Pre Mommy taking classes it was no problem.

With me taking classes it is a problem. There’s only so much time in the day. Also, my kid will be a turkey with me:crying, pouting, fit throwing, you know the drill. Our kids will push us to our limits of patience, but will be perfect angels for everyone else. This just childhood, nothing to do with dyspraxia.

But a tutor? And a person he already loves to death? Who also happens to be card carrying member of the Grammar Police? Oh yes, that will do. That will do nicely, thank you very much. No crying, no fits, just lots of learning. And that is a wonderful thing.

Now, I’m off to do your own homework. Ack! I promise, tho, no crying… well. I won’t throw a fit…. no. I promise to do my homework. How’s that?

Neuro

My path is not the

Straight and narrow 

Of your ken…

You say you understand,

My brain isn’t wired like yours.

And yet, 

Every time,

Everyday,

I have to fight for the

Simple right

To be 

Who 

I 

Am.

If I had autism

I’d fit in your b
ox.

If I had ADD

You’d feel better

Putting pills 

In my mouth.

It’s not my fault

You choose not 

to see….

There are no boxes 

For souls

And mine is beautiful

Even if you choose

Not

to

See.

To the Woman Dating My Ex….

Please know that what I have to say has little to do with jealousy. The man I left is not the man you are dating. That being said, there’s a history between he and I. And when it comes to our son, it informs my decisions. I try to make all my decisions be the best for my son. That’s why I have never bad talked his father to him, or allowed people to do so in The Princeling’s presence. I have always tried to keep that door wide open, so he could have a positive relationship with his father.

However.

You might be the sweetest person in the whole world, the re-incarnation of Mother Teresa, and still I would say: I should have been consulted before my son met you. Period. That should be the end of the story, because really. It’s a fact. But I’ll let you in on a few secrets.

When most people see my son, they see a bright, happy friendly kid. The Princeling can make friends no matter where he goes. He is not shy, my son.

I get to witness the tempest, try to navigate its waters. You see, the Princeling has a neurological condition called Dyspraxia. And while many people look at him and see the surface, or only the bobbles of the motor skills… I get to deal with all of it.

Like the fact that he sobs uncontrollably for twenty minutes after his dad leaves. Don’t believe me? Ask his family. It’s happened over there. He feels, deeply and profoundly… but those feelings are not tempered by a normal neuro child. He has chased after his dad’s car. He has started to jump out of my car when his dad passed us. Poor impulse control, coupled with an emotional base that is not on par with his years. Welcome to dyspraxia.

Then there’s the sensory processing disorder. When things get too loud, he shuts down. He has gone to the ER with what was essentially a panic attack from a movie that was too much for him. I have held him to me, one ear pressed into my chest and the other ear covered by my hand. This is not something that happened to him, something that he learned. A semi-truck or motorcycle going past the house was enough to make him scream as a baby. We’ve learned ways to cope. He also has a weird reaction to pain: sometimes he doesn’t even feel it. And sometimes, no one knows because he will power through and save it for when he gets home. For me to take care of. His safe place. Which is why when he falls, and he will fall, you need to check him over.

Princeling is smart as a whip. I’ve had him tested, so I know. But he has problems getting it out, and doesn’t learn the way most do. Coupled with short term memory loss (please don’t ask him to remember your name), it makes learning a challenge for him. He’s also at the stage where being in that class is making him feel vulnerable, less than other kids. Add to that the fact that his speech is getting sloppy again, and he’s drooling just a bit again. Which leads to more teasing, which he has a hard time coping with. He keeps it all inside.

Yah. It isn’t easy being a dyspraxic.

Go to http://www.dyspraxiausa.org and poke around. Warren has a lot of great information on the site. Because dyspraxia is a great big grab bag full of wonderful chaos. If you’re going to be around my son, he deserves nothing but your very best effort at understanding him.

It isn’t easy. Even some family members don’t get it.

But that’s ok, with them. Because he has me, and other advocates in the family that have taken the time to learn about dyspraxia and deal with him

But when it’s just the four of you?

You’d better be on board. For his sake.

Because he’s worth it.

Melancholy

Today I’m feeling a little bit melancholy.

My son is growing up.

I know this not a great, big surprise because that’s what children do. But with his dyspraxia some milestones took longer than for other kids. Walking, talking, socializing, self feeding, all sort of things took longer. In other words, I got to hold him closer to me for longer.

Now, it’s starting to be time to let him pull a way just a little bit.

Three (possibly 4, but I think 3) years ago today was the first time I left him alone with my father. Dad is currently 87 (and more spry than me!). At the time, princeling didn’t talk very much, and what he did say was often unintelligible. I left them together so I could go buy my Nook on special for $ 79 (which was for the plain old one… scored the HD version today for same price!). I really wanted one, and access to the free books. And to not have to drive so freaking long to get a new book. So my dad (whom we live with), sat back in the bedroom and watched my son play video games for the hour and a half it took me to get down there, do what I needed to and come back. There was no way in %^&* that I would have taken princeling out that day— couldn’t talk, too friendly, apt to walk off with total strangers without a peep.

Not so very long ago, I also had to build all of his Lego’s. We had many sets, but at the time, he loved the Hero Factory line. Think snap together dolls for boys. He loved them. So I built them. Boy, did I build them.

Today, we *both* went to Barnes and Nobles to pick up the new nook (Merry Christmas Mommy!). I had told him he could go look at the Lego’s while I talked with the nook lady, and I’d get him some. He did. He stayed right where I put him, again, and proved that he could be left alone for short bursts of time. He even told two ladies shopping for their grandsons that they were buying their Lego Guys wrong– and they thought he was adorable and helpful.

They actually appreciated his help.

When we got home, he started building his Hero Factory guys. All by himself.

And I miss it.

I miss him.

But that’s ok. It’s my job to give him wings, not to clip them no matter what his diagnosis. So I let him tell ladies all about Lego’s and answer their questions. And I let him build his guys all by himself.

And take lots of pictures.

 

If you’d like to know more about Dyspraxia, a neurological condition that affects 1 in 10,  check out the website Dyspraxia USA or check them out on Facebook

 

 

For my faithful readers, I’ll have a review up tomorrow and possibly even a writing related post on Sunday. Four day weekends are the best!

Updates Updates Updates

Well it has been a strange month.

One thing that is getting clearer, though, is that I need to continue to write.

I’m plugging along in camp nano, although I am not up to par with the word counts at the momen. SIGH. I think the main thing for me is that I’m learning where my writing groove is. It used to be late at night— now? Not so much. Early morning, or evening works, though, depending on my son. I tend to peak out at about 1k words on a week night, but can push it up to 2k.

If it’s a good day, I can write while he’s at home. But he has Dyspraxia, and sometimes fate conspires to throw everything at that kid all at once and it makes for one very very long day. Or, we have a night last night where he was up, violently ill, every half hour. Until 4am.  Ugh.

Still, I’ve gotten in a good 1,000 words so far for today.

On the good news front, I sold my first short story and sent in the contract. The happy dance was the funniest one you ever did see.

Hopefully, this weekend, I’ll have some more book reviews for you. I haven’t been reading lately, and I am definately feeling that lack.

My Big Boy

It came to my attention, once again, just how far Ray has come.  There was a guest at church today, once that hasn’t seen Ray in about a year. We were talking about his speech, and the fact that he tested really well at school last year academically.

Ok. You have to remember that at one point, I was told to expect moderate retardation at best in his testing. Most probably combined with autism. (Neither of which is his particular problem).

So. The fact that he can feed himself, make his opinions known verbally and is a social creature is really quite remarkable to some people.

We, however, always new better. If not, go see the post titled MY KID’S NOT AUTISTIC.

Anyhoo— We deal with Ray everyday. So we still see that he falls off his feet (Kerplop!), has a few motorskills problems, but is overall a bright boy. We forget sometimes, exactly how much he has learned in the past year. How much his learning has accelerated. Colors, numbers, counting, shapes, name recognition (written)…

He learned a lot in the past year and I am so proud of him! We still have things we need to work on, but overall… He’s the smart boy I always knew was residing inside his head. He just couldn’t let people know before.

Autistic my fanny!

Bakugan’s– a learning tool

One of Ray’s newest obsessions is the little bakugans. They are small little balls that when popped on their card (magnetic, I think), pop open transformer-esque. He has 3 of them currently, and loves them. He will not allow us to play with them– the child who will normally share whatever he has, no matter how well loved the item, has grown selfish.

YAY!

(He’s acting like a normal 3 1/2 year old here, excuse me while I wipe a tear from my eye.)

But there’s something more, too. These little toys need someone who will fiddle with them, and employ fine motor skills. Which, if you remember, motor skills is the place where Ray has the slight problem. The Dyspraxia affects both fine and gross motor skills. So here he is, gaining dexterity, expanding his brain power as he figures out how to put them back together….

Oh, and the imaginative play is active, too.

Bakugan’s rock for Ray. In more ways than one. 

YAY Bakugan!

Thank You UC Davis!

Sorry it’s been so long since I’ve posted. Ray went up to UC Davis to meet with the loverly and talented Dr. I. and has been sick off and on ever since.

UC Davis day was a long day. BUT…. So worth it! Dr. I. agreed with me…. MY KID IS NOT AUTISTIC!!! You don’t know how much of a relief that is for me. I’m sitting here crying. Where Ray is concerned, I feel as if a huge weight has been lifted off my back. I never truly felt that he had autism, but felt that the system was trying to push that diagnosis on him because of a few tendencies that he has (tip toe walking, language, drooling). I didn’t know what was wrong, but I knew deep in my heart that my KID IS NOT AUTISTIC.

That’s not to say that he doesn’t have some problems. Dr. I. said that if she had to diagnose him, it would probably be a mild form of DYSPRAXIA. Of course, we got home and I looked it up on the internet right away. My jaw dropped, my heart kind of did a little leap.

Yes, my boy has problems. But at least the diagnosis seems to fit the problem now.

Dyspraxia is a nuerological disorder that effects the planning, organization and carrying out of both gross and fine motor skills. Things like his having problems with a spoon, lack of talking, his “clumsiness”, his abhorrance of the tooth brush, the way he can’t draw a straight line, even the way he loves on certain textures (his wooby)… So much! Having a hard time finding anything out about helping with the motor skill part, but the speech part– some people have had a lot of success using sign language because it gives the child another way of expression and/or the cue.

(Personally, I think it boils down to a multi-sensory need for learning. I could be wrong– like I said, still starting to find out about it… But I will know more. I will! I Will!!!)

Anyhoo– So Ray and I are working on “S” right now. I have hissed it into his belly, let his fingers crawl into my mouth as I said that sound… And he can make an “S” sound. For today. I know it’s going to take a lot of work. But that’s ok!

I AM SO HAPPY!

And ok. Yah, A LOT of that happiness comes from being RIGHT!

AHAHAHAHAH!!!!!!

Seriously, though. It does reinforce the point that at the end of the day, these little blessings are OUR children. If a doctor or a therapist or teacher is trying to tell you that something is wrong with your child, but it does not fit… Say something. Because we are their first, their BEST advocates. Push until they can either explain to you WHY their diagnosis is correct in a way that makes sense to you, or for another opinion.

Ray does have some “symptoms” that mirror autism.

1. Tip toe walking. Doesn’t count though, because he only does it when he’s up to no good or day-dreaming

2. The drooling. (Turns out, according to Dr. I. that it has something to do with when he’s concetrating (i.e. fine motor skill or learning) something in his brain misfires and he forgets to swallow).

3. Parallel play. He doesn’t play with other children his own age, but rather next to them. Mostly, it’s because he gets frustrated. He’s not a dummy, he just doesn’t have the tools to communicate effectively with his peers. Yet.

4. Lack of Imaginary Play. He does, actually, do imaginary play. He’ll give a stuffed animal his binky, tried to feed his snack from Dr. I to a stuffed rabbit, made appropriate noises, etc… That’s actually when she turned to me and said she agreed with me, that he is absolutely not autistic.

Now, there is a chance that at some point the doctors will be right, and we, the parent will be wrong. That’s why I said above that they need to explain it to you in a way that makes sense to you.  It’s the difference between accepting a diagnosis (or a tendency to push for that diagnosis by some people) of autism, and getting a diagnosis that fits not only Ray’s  symptoms, but also his personality.