Tuesday, August 26, 2008

one of the hardest days ever...

Today is one of the toughest days of my life. Not that today will be tough in particular. I have no Hurculean tasks on my schedule, no doctor visits, no taxing phone calls. If I get motivated I might do the dishes, there is a shower in my near future, the laundry is in the washer now & I may even take a nap. Sounds pretty normal and boring, doesn't it?

So why is today so hard for me? Today my baby started kindergarten. Yes, I know, kindergarten is hard for any mom. We all get tearful, especially if our little one is getting on the bus. Especially if he will be gone all day. Especially if he doesn't talk, can't feed himself, can't tell someone if he is hurt or scared, doesn't understand playground rules or can't explain why the recess bell sound is terrifying to him.

But even all that isn't why today is so hard for me. Don't get me wrong, all those things bother me too, but I've been through this before. Beastie has been in preschool for two years. He's ridden the "short bus", he's been in a school setting. He even did a full day camp this summer with great success. So I can handle all of the normal first day of school fears, first day of kindergarten fears and first day of sending my autistic child out into the world fears.

What I can't handle is the disappointment. See, when Beastie was diagnosed with autism three and a half years ago, we were told we caught it so early (19 months) that we would be fine. We would just work really hard, get the best therapy that was available and he would be okay. I told people, "Yes, he has autism but it's okay, we caught it early and we will just work really hard and he should be able to start in normal kindergarten in three years." I said for years, "He is the hardest working (two)(three)(four) -year-old you've ever met." Last year, I began to realize that even with all that hard work, I was wrong. We wouldn't be starting "normal kindergarten". We can't even go to "normal autism classroom kindergarten" -- Beastie is enrolled in a special classroom for those with the highest level of need. Plus his level of need is so high he has to have his one-on-one independent therapist in school with him every day. If she can't be there, he can't be there. It's a huge let down from my hopes of three and a half years ago.

So who am I disappointed with? Beastie? Never! He works so incredibly hard to do a fraction of the things that other five year olds do. Am I disappointed with our school system? Not at all. We are blessed to live in an area with one of the best programs in the state, in one of the best states in the country. Am I disappointed with his behaviorial services, the people who work with him every day, set up his treatment plan & teach him how to be as successful as he can be? Absolutely not. Beastie has a dedicated group of people on his "team" who go above and beyond the call of duty, often for free or for little pay to help him learn and grow. Do I blame his pediatrician who gave him his vaccines? No. I made that choice and I would do it again. Autism may suck, but it's better then death.

So who does that leave? Me.

And yet I know I have done everything "right". I've been told hundreds of times, by hundreds of highly skilled professionals that I am the best possible mom I can be, not only to Beastie, but to his two brothers as well. I have even started seeing a therapist to help me get past the "mommy-guilt" that so many mothers of disabled children feel. And yet, when you get right down to it, I have a terrible time getting past it, I know I shouldn't, and yet I still blame myself. I should have done more, I should do more, I should be more, I should teach more, I should research more, I should, I should, I should....

I exhaust myself with the guilt.

So, at the end of the day, my dear, sweet Beastie will get off the bus, over 8 hours after I put him on it. He will probably be napping. He will surely be exhausted. But he will most likely be happy. He loves school & loves interacting with others. And I have to learn to accept that that is enough. I have to let go of the dreams I had three and a half years ago. I have to focus on making today the best it can be and hoping for the best for tomorrow and I can't think about first grade or high school or life. I cannot set my self up for more disappointment. I cannot have any more days as hard as today, one of the toughest days of my life.

Saturday, August 16, 2008

questions people ask...

Does Michael Phelps have Asperger's? I've heard this question more then once today. I even asked it myself as I listened to an interview his mother gave. But what put me over the edge was when someone asked the same question over on Yahoo! Answers and the dearth of uneducated responses, ("how can he like have that? he talks in interviews... he interacts with people") prompted me to jump out of my usually quiet shell and give a somewhat more educated response. I've copied it below, in case anyone else may be interested...

You know, I heard the interview with his mother and I thought the same thing. The way she described how he focuses and what happens to him psychologically when he is in the pool is very reminiscent of how those with Asperger's interact. My 19 year old son was diagnosed with ADHD back in the 90s when it was the diagnosis du jour (and the same time Phelps would have been diagnosed). I never felt that he was properly diagnosed, but there was never a better explanation for his behavior. Fast forward to today, my youngest son has severe autism. I have learned tons about both autism and Asperger's through my volunteer work with the Autism Society of America. Now I am convinced that my oldest son actually has Asperger's, not ADHD, even though it was never diagnosed.

For those of you who made some uninformed statements, let me tell you a little about kids with Asperger's. They are usually smart, very smart. They can hold conversations, in fact they can talk & talk & talk if the subject interests them. They do make eye contact, if they chose to. They have problems with social skills, they are never quite sure how to appropriately interact with their peers and are often bullied throughout adolescence. They are often dyslexic. They tend to hyper-focus, find a topic that interests them and then become experts on it, the best at it, pioneers in their field. Most of them go to college, get married and have families. Many of them work in the tech sector or in other highly involved, complex fields.

I don't know if Michael Phelps has Asperger's or not. It wouldn't surprise me at all if he did, but in the grand scheme of things, it doesn't really matter. He is an amazing young man who has done amazing things and has made an entire nation stand up and cheer. Which lots of people with Aspeger's have done in the past & will continue to do in the future.

Learn more about Asperger's here: http://www.aspergers.com/
See a list of famous people with Asperger's or Autism Spectrum Disorder here:

Thursday, August 07, 2008

a quick update...

This will be quick, because I have 10,000 other things I should be doing, even though I would rather be here. A couple of quick updates:

~ Beastie's MRI came back clear! No brain tumors, no scary stuff, just a normal beastie brain. Well, ya know, normal for the beastie.

~ Given the fact that his issues are now "just autism", we went ahead and started him on Risperdal, the autism drug. It's only been a week, but so far the results look promising. More being 'here', more eye contact, doing better in drills, doing things he has had a lot of trouble with in the past, less temper tantrums, etc. Plus the verbals seem to be going up. And no, we're not just seeing these things because we want this to work. If anything, we are skeptics. Remember, we tried the Gluten-free/Casein-free diet that works wonders for most kids with autism and it did nothing for beastie, not even a tiny improvement even after 5 months of strict diet. So at the moment, we are just the tiniest bit optimistic.

~ My secret pal Laura loved her Christmas in July gifts, including the hand knitted socks I made for her. She's had me twice in a row as an upstream, so I'm glad she likes my presents. It's tough to buy for the same person two swaps in a row because you've already sent a lot of your "go to" gifts (ie special hand cream that I love, stitch markers from a favorite etsy seller, etc).

~ I have dropped out of the UFOlympics and signed up for the Ravelympics along with several other members of the Harrisburg Sock Knitter's group on Ravelry. I have registered my everyday baby blanket, which is almost done, my yeti baby sweater, which just needs the hood knitted and then to be seamed (ugh) and last but not least my pride & joy, the heirloom baby blanket, which is considered "advanced" crochet by the pattern designer and also by those who rated the pattern on ravelry. I'm afraid I've bitten off a bit more then I can chew, so I think I am just going to focus on the heirloom blanket and hope I can at least get that completed.

~ I still can't smell. I go to get a cat scan tonight to see if it's allergies or sinuses. Then in 2 weeks I go to have that lovely prick test done to see exactly what it is that I am allergic to -- fun, fun, fun.

I think that's it for the moment. Or at least all I have time to post.


I almost forgot about the spinning! Yes, there was spinning yesterday! Here's the proof!!! It's a 2 ply merino & silk blend, spun fingering weight, about 300 or so yards by my best guess. Hard to tell since I can't find a part of my niddy noddy so I can't measure, but I'm estimating. It might be a little longer, not sure. I do know that it's pretty as sin and that I can't believe I went so long without spinning.

I had lost my spinning mojo, but my friends on plurk had me itching to sit at the wheel again. And then it was 'my' day on the Stitch n Bitch calendar. The day where my yarn was featured.

The two combined had me digging thru bins and finding all the components of my spinning wheel and getting it oiled and set back up. I spun for about 2 - 3 hours yesterday. My fingers instinctivly knew exactly what to do, as if I had never stopped. However my hips quickly reminded me why I had given up the hobby all those months ago. Yes, today my hips still hurt, but I think as long as I am careful and don't do the marathon 8 - 10 hour spin sessions like I used to do and treat it more as a hobby then as a profession like I used to, I will be okay. Oh yeah, and if I take my meds like a good girl. Why does it always come back to taking my meds?

So now I'm really running behind on my work, so the hybrid crochet/knit sock I am working on will have to wait for my next post. Yes, you read that right, a sock that is both knit & crocheted. Wait till you see it!

Tuesday, August 05, 2008

who I am...

first go here:

when you get your 4 letter personality type, go here:

Click on your 4 letter personality type to learn all about you

I am in INFJ & here is my profile:

My description fits me perfectly -- how about yours?