A good day indeed

Gregory had his initial psychological evaluation today with the regional mental health center. Dr. Silva believes he is only mildly, if at all, autistic and those signs which he does exhibit she believes he will grow to manage and adapt to with time.

She does believe he has some high sensory needs, and we both agree that this is the root of most of his troubles. Seeking constant stimulation, high anxiety. She doesn't believe his speech is too far behind for his age, and believes he is very intelligent.

In a nutshell, he's mildly autistic/PDD with SID. She does not recommend any invasive tests or treatment, only to continue the autistic preschool he's in, and perhaps work with a private therapist who works with autistic children if we feel the need. Read, educate ourselves, and find our support systems...and that's about it!

This is a happy day for me. While I know he has a long way to go, and the sensory troubles are the hardest for him to manage, I know eventually all will be fine. I guess I kinda of always did know that...but it's nice to hear it from a trained professional.

She also praised me for the way I handle him...even after I admitted how I often lose my temper. She understood, and told me not to belittle myself too much, because for the most part, we're getting it right.

Yes, it is a good day indeed.

I wish I were Autistic/Guilt City

Sound crazy? Listen to my reasoning.

If I were Autistic enough to understand how it works, but mildly enough to be able to communicate effectively, I could understand my son. Right now I'd know what it feels like for Gregory to be upstairs, unable to sleep and not wanting anyone's touch or sound nearby. I'd know what it's like to live in anxiety. I'm learning that autism is living inside anxiety. That it is anxiety looking for a target. Somewhere to fall to release the tension of anxiety. Can you imagine living like that?

I'm assuming his recent bouts of horrible sleeping are connected to what I mentioned in my earlier post about his brain rewiring. He's usually such a good sleeper.

I WISH I WERE AUTISTIC...I want to understand this for him. Get inside it and live it and find a way to understand it for ME. Because when he's thrashing around in his restless slumber, I want to know if he's truly miserable or if that's how he just accepts life to be. Is it painful? Is it uncomfortable? Is it upsetting to him? Or is it just how it is for him? Or all of the above? I want to know, and not just what the textbooks tell me, either.

On another note, you wanna talk about GUILT...I've spent the last few days realizing how badly I've mishandled Gregory his entire life. Letting him cry it out when he was a baby...Jesus Christ how damaging was that to a fragile boy like him? What about the times I lost my temper? The occasional spanking? Good Lord...

And now my mom brings home a report that autism may be caused by television. Well, first...I'm WAY skeptical...but I'm biased too. It's hard to doubt something that kept food on our table and clothes on our backs for so many years. Also, in retrospect I remember so many things about Gregory that happened long before any kind of television viewing that now ring of autism.

If I dared, I'd take a valium tonight. I can't shut my mind off, replaying over and over all the things I've done wrong with him...all the things he must feel and go through every single plain day of his life. Maybe this is why I've had a headache for 3 days.

Please God, let my son sleep peacefully. He has no peace during his waking hours...please touch him with your gentle hand and help him through this.

I'm out...too spent for more.

A mother's helplessness

I am mother. By that very definition, I should be able to fix all that ails my little ones. I've already learned that I can't fix what ails Gregory, not permanently. But in the past few days I'm realizing he's going through something right now that I can't even touch.

Trouble in school, horrible sleeping at night, regression to some behaviors that I haven't seen in months. His occupational therapist says it can happen when they have breakthroughs or if they make big progress in something. The brain has to rewire itself and they go through adjustment periods while getting used to their new "self". Gregory is pretty much potty trained now, and has had some big speech improvements. But his temper has flared again, and he's waking so much at night that it just can't be possible that he's rested during the day. His teacher is noticing some behaviors as well and he is having trouble with parts of his day at school.

I watch him lately when he tries to cope. He's chewing a lot, and is searching...always searching for the sensory input that can soothe him. GOD DAMMIT why can't I help my baby!?!? I want to take him in my arms and tell him that no matter what he does, it's ok, we love him and he'll be okay. I want to ease his tension when even he doesn't know what to do. I want to reach a hand to him and let him squeeze it until his frustrations subside. I want more than anything for him to be able to articulate to me what hurts, what's upsetting him, what's making his day so rough right now. I want to fix it for him.

There's nothing worse than feeling helpless when one of your babies needs something that you can't provide.

That little ache

My darling baby boy is tucked up in his bed, fast asleep. Dreaming, i hope, of whatever fills his heart with happiness. I just wish that tomorrow morning he could tell me what it was that colored his dreams the night before. I'd go and sit on his bed and watch him sleep, but I fear my tears wouldn't be silent enough not to disturb his slumber.

I don't know how mothers of ill children go on. Gregory's disease isn't life threatening, it's not going to make him sick, yet it puts a squeeze on my heart that doesn't ever let up...and sometimes gets so tight i can't breathe.

1 out of 164 children are being diagnosed with autism. That's a frighteningly huge number. And my oldest falls in that group. Don't know how severely yet, because most of the time he's just another rambunctious 3.5 year old.

But then the reminders are there. When you ask him a question and he doesn't answer. Or can't answer? I never know. When you get excited for him for an event, a toy, a special day...and he doesn't seem to understand it or talk about it. And mostly when you realize that there really is something going on in his brain. It's not behavioral, it's neurological. There literally is something not "right" in his brain. And they can't fix it. We can only do our best in the home, medical, and educational areas of his life to teach him to manage his disease and live within it.

So today I find out that he is academically above the curve. I always knew he was smart, but to hear it from a teacher who specializes in autism...that was a big plus. Socially he's not really progressing, and that will be what keeps him from starting school on time with his peers. But he has quite a while before K, so I'm not worrying over it yet.

I also find out that he may be having seizures. "Petit Mal" seizures, or "absent" seizures. I read about them and while I'm not fully sure that's what they are, I'm scared nonetheless. They don't seem to be damaging, nor can they often be detected or cause determined, but they scare me anyway. It tells me something is going wrong in there...in his little brain...and I CAN'T STOP THEM.

*Sigh* I'm on a horrid spiral lately anyway. It's a bad time to be analyzing this stuff. There's so much I want for him, and while I DO KNOW that most if it is attainable, my heart hurts so much for him. I hold him sometimes and whisper to him, and kiss his head and pray so hard my head hurts. I think to myself, 'maybe I can love it away' knowing full well I can't. I want to go upstairs right now and gather him in my arms, and shut out the whole cold world. Keep him safe in the place he loves most...the place he goes to when he's anxious or stressed and says to me, 'hug you?' I want every person on the planet to see his spirit and feel the same protection I do, protection that will keep evil away from his pure soul. I pray with nearly every breath that his life will be full and happy. I pray that the world isn't cruel to him. I pray that if he can't do everything he needs to on his own, that I'll be around long enough to help him, and to raise his brother and sister to know that they are to be there for him too...and there for each other. That is family, it's what you do.

But I won't disturb his sleep. I'll sit here in the dark tonight and watch reruns of some show I don't even care for, just to hide the sounds of my sobs and nose blowing. That's how you cope with something like this, because it's not dire enough to cry out in public. People would tell you to suck it up, it's not that bad. This is something you cry about at night, alone with God, because he will always let you be as broken hearted as you want over the little things that hurt your children.

And tomorrow will be another day I smile for my Gregory and continue to thrive on the hopes and dreams for his future, just like Nicky's and Sofia's. They're all my babies. And all I have.