Tag Archive | developmental delay

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!

Unfriended & floundering

I have never been the type of person to have a whole bunch of friends. Just a few, that’s all a person really needs, right? A few really good friends can get you through anything, and boy have they. But then things converge…

Four of my closest friends live either out of state or out of country. You know who you are, and for these purposes, you are officially “off the hook.” But I will say I love you, my peeps. And I miss you more than I can say. Although I’ll probably get pretty darned close.

But then there are those that are close. And yet still, I don’t talk with them. See them. Nada. I have one friend, B, who I see & talk with on a weekly basis. We used to see eachother every single day– watch Buffy together, even. That was when we lived in the same apartment complex. R and I… we used to see eachother all the time, too, before she moved oos (out of state). I’m used to having at least one friend that I can talk to all the time.

(…I think I’m getting needy…)

Don’t really have that right now. I’m at loose ends. Even my dad, my 83 year old dad has a social life. Tried to call him tonight– nope. He was not in. SIGH. (Although I am very happy for him).

Even though I had vowed I was done trying, I picked up the phone to call one friend tonight. Got voice mail. Don’t know why I bothered leaving one, I won’t get a call back. And I’m off into the viscous cycle.

You know, I was ready to not have time for friends because Ray needed me. I was. I was going to spend time with him, have fun, do this do that… And then it turns out that the developmental problems may not be as large as some thought. Now that the fight is over, so too is the need for over protection and making sure things go right for him. There’s still some level of fingers in the pie, especially with school… But no where near where I thought it might be this time last year. Now, he’s all gang busters making friends and being a “love” to his teacher.

Brian has classes 2 nights a week. Then there’s Bible Study on Monday, too. He loves Bible study, comes home all a-glow with the warmth of seeing friends and studying with them. How can I tell him NOT to go? Can’t.

It didn’t hurt so much, or feel so bad when I was at Dad’s because Dad is as social a creature as I am. Just enough to be connected, but leave me alone when I want to read. Brian, not so much a talker. Which is fine, I guess.  I mean, I married the man knowing this.

I’m just feeling lost. Unfriended, as if there was a poll and everyone decided to get rid of me. Isolated. Sorry for myself.

So here i am, throwing it all out there to the world. Lets face it, a blog is a connection of sorts. The act of reading this blog opens the possibility of a dialogue.

Or you know. I could get off line, pick up the phone, and try again.

I think I’ll do that.

Yah.

Right after I hit “Publish”.

Fiction vs Fact

The old adage is to write what you know. Obviously, I have never lived in a small kingdom where witchcraft and broadswords are the norm. Quite frankly, not sure I would want to. I like my computer, television, MICROWAVE, COFFEE POT, etc. etc.

But the fantasy genre is about so much more. You have to peel back the layers, magic included, and a lot of people don’t get that. That’s ok. They don’t have to “get” my writing. Just like I don’t “get” Dickens. It’s ok.

But is it ok to take something obscenely personal and splash it across the page? I normally don’t have a problem with this issue. If there’s something that I feel is too personal, I keep it that way. But when it comes to Ray, a lot of times I’ve written about the struggles. The joy too, but the struggles are out there in the open.

So. I was writing that scene the other day (the one where the potential villain became an ally and is going to require the entire beginning of the book? Yah. That one). SO the argument that roils around them, that has such power, is about her son. It doesn’t take a genius, here folks.

So. Do I go ahead and write the story that is exploding across the page? Personally, I don’t find the heroine’s views towards her son as anything other than normal: fiercely protective, loving, lioness… That the son is seen as something other than normal is by *other* people, not her. To her, he is the precious jewel to be protected against theives in the night.

Obviously, there are differences. There has to be, given the settings that I’ve chosen. And the story isn’t really about him: it’s about her struggle to first get him somewhere where he will be accepted, then to accept what fate has dealt not only for him but for herself. 

Wow. Yah, there could not possibly be anything of truth in that. Anything that I might know first hand.

So. Is it fact dressed up as fiction? Or is it fiction? Does it matter? If the power of the words is there… And not written in a manner that is meant to harm, but to work it out across the page…

Does it matter if it is fact or fiction?

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!

My Kid’s NOT Autistic

Dear teacher’s and case managers and everyone else:

I appreciate that you’re just trying to help. I really do. But for some reason, you keep trying to put my son into the category of being “autistic”.

Tip-toe walking, a bit of drool and language delays do not necessarily autistic make.

I freely admit that he needs help, that there is a delay and something is wrong. HOWEVER, he’s not autistic. And the more you keep trying to test for it, going to bigger and bigger testing facilities, the more I wonder… Are you so ill equipped that you can’t help a child that *doesn’t* fit into your neat little molds?

I walked on my tippy tip toes. My mom solved that by throwing me into heavy buckle up past my ankles walking shoes. I never did that with Ray. He doesn’t talk much, he does have a language delay.  But I always thought that autism presented as a child loosing language– Ray has never had it. Yes, he throws fits. Bites and hits. He’s 2. It happens. And yes, he drools. A lot. I’ve met large, drooly dogs that drool less than him. And as for his being clumsy… I hate to tell you this, but that’s a family trait that he got from me. My sister. Countless other children in our family have the same “affliction”. As for pointing to objects, you might not have seen it yet but trust me– he does. You should see him on a quest for cookies or chips.

Yes, I know he presents a puzzle. But I’m hoping, praying, BEGGING you to see the beauty of this puzzle. He’s bright. He remembers things. He loves people– I wish you could see him zooming through the church, hugging all the people. Who, by the way, don’t mind being slimed by his drool. They love him right back.

He loves music, and dancing. There are morning when he wakes up dancing. He loves to explore new frontiers, and DH and I have a heck of a time keeping up with him as he tries to learn the world one tree at a time.

He hugs trees. Picks flowers. When he tries to smell them, he scrunches up his nose and makes a blowing noise like he’s, well, blowing his nose. Bubbles captivate him. Cars and balls are his favorite toys. I remember bringing him home from a large toy store, and he clutched his new truck all the way home, then all the way into the house. At the time, it was almost as big as he was.  He can sit and watch a movie, and he knows exactly which one is which by looking at the pictures on the case. He loves the digital camera, and (by accident) taken some really good pictures.

SO please, please, PLEASE…. Test him all you want. But know that he isn’t going to fit into your mold of what he should be. He is, simply, the Little Ray of Sunshine that has brought a miracle into our lives.

Let him spread a bit of it in yours, too, OK? That’s all I’m asking.

Thank you,

Ray’s Mom