This blog has moved

Welp, I'm not a toddler mom anymore so it was time for a new blog name.  You can find the new stuff at autismmomisms.blogspot.com

Shaded by our experiences

I recently learned a friend of mine is having another baby.  I just had a feeling of doom when I learned that.  Why would anyone want to have a baby when the chances of it being autistic are 1 in 68?  I guess if nothing bad has ever happened to you then you figure nothing bad ever will, so you continue to have children.  I wonder what her child rearing experience has been like compared to mine.  She probably never regards her children with grief and weeps at the sight of them.  So, if you never experienced parenthood as a tragedy then you may look forward to having children. 

That's the thing.  My life is a tragedy.  The way my son is, is not a gift, it's a tragedy that struck him and robbed him of a normal childhood, heck it robbed his life.  I don't care what those quacks on other blogs try to tell you.  Autism is not a wonderful thing.  I know I blog about how loving your kid is the bottom line and it is.  I do love my son.  But I grieve for him also.  That's why I could never imagine having another kid. 

Things to do!  Gotta run, would love to write more on this. 

How I feel about pretenders

Below is an e-mail I sent as a complaint for those parents who abuse the system to get services for their children when they don't really need it.  Some parents seem like they are Munchausen and they just want something to be wrong with their child when there is nothing very significant going on.  When it starts to affect me, is when I have to wait in line for services behind these pretenders, and that makes me angry.  These people are the same as those parents who abused the disabled pass at Disney.  They are sucking up services for disabled while the legitimately disabled wait in line behind them.  These people make me sick.

The subject line of the e-mail was "Recipients are frauds."

The e-mail...

Last year I applied for a waiver for my son who is severely affected by Autism Spectrum Disorder.  I recently discovered two people in my extended circle of acquaintances who receive the waiver.  Both are high functioning, one is in college and the other is in advanced placement classes in their high school.  I find it beyond disgusting and irresponsible that there are seriously disabled people waiting 12-15 years (from what I hear) to get one of these waivers and high functioning people who are independent with self-care tasks and have no intellectual impairments are taking up a space that should go to someone who is legitimately disabled. 

My complaint is that 1) the waiting list is too long and 2) high-functioning people who are independent with self-care tasks and have no intellectual impairments should not receive services.   Surely, there is something you can do in your organization to prevent these mostly healthy individuals from abusing the system and robbing seriously handicapped people of services. 

That's not it

I've been reading some research studies that suggest Autism follows a trajectory.  There are four or six trajectories depending on which research study you are reading.  What kind of bugged me about it was this one research study suggests that Caucasian mothers who are educated and, I guess, more involved will have children who bloom and come a long quite nicely.

I fit that description and yet my child doesn't fall into the bloomer category.  So, it has to be something different that makes the children bloom.  Suggesting it's the mother is just researcher bias.  Really, like I've mentioned before, whatever determines how far along these children develop is something that is internal to them. 

Just like us.

Whatever determines who will be successful and who will be a loser and who will be a successful loser is all on what's inside of us and what we're capable of.  It's the same with Autism.  Sure, there are external factors that could affect you such as abuse, for example.  Conversely, a very nurturing environment may help produce a child that's more adapted.  But that's also the same for the general population.

I guess, what I'm trying to get at is it's not on the mothers.  Your kid is going to be a spelling bee champ, or not.  They're going to be a football star, or not.  You can't make a spelling bee champ or a football star out of a kid who just doesn't have it no matter how hard you drill them.  Basically what it boils down to is that your child's potential is your child's potential.  It's a unique skillset they were born with--not a jello mold.  All you can do is love the child you have.   

Shake the dust off this thing

I actually stayed away so long I forgot my password.  Got that straightened out.  I'm typing this on the iPad, this must be what those bad typists feel like when they have to peck things out on a keyboard using two fingers.

I am almost finished with my Master's degree in Psychology, which I got into so I could learn more about teaching the developmentally disabled.  I am here at this point and made a huge discovery that I am not responsible for fixing my kid.  Absorb that.   Seems like I wasted two years of graduate school learning how to fix my kid, only to realize when I'm almost done that it's not my responsibility.  I finally realized that all I have to do is love him.  Whatever he learns or doesn't learn is not on me, it's up to him.  Maybe he'll get there and maybe he won't.

I, like many special needs parents, got caught up in making myself responsible for something I had no power over.  We do that, assign ourselves the responsibility for our child's development, because we don't want to feel powerless in the face of our child's disability.  It's really quite profound.

So, here I am struggling to learn to let go of the result and just love my son.  That's all I am supposed to do.   It's really hard, what really makes it hard, is the despair.  It's really hard to find love in your heart when your child's disability is screaming in your face and all you feel is soul-shattering despair and begin to question if you even want to live anymore.  And in this place, find your love, express your love.   That is really tough.

I thought I'd write it all in my book, about loving your kid, but I'm not at the right place right now bc I haven't fully come to grips with the struggle myself yet.  To be continued.

Once Upon a Dream

This summer was hell.  I lost my job, my special needs son broke his arm and subsequently his mind.  I seriously think he had a nervous breakdown because he had such a hard time processing why he was in a full arm cast and probably thought he was just stuck like that.  My poor baby.  I had to take him to the ER and they put him on a benzodiazepam.  That helped some. 

There is a funny story there.  I had to drive all over hell to find a store that actually had the medicine in stock.  When I found one, they had some b.s. reason why they couldn't give it to me.  I guess insurance companies require extra authorizations from the physician before they'll pay for something like that.  I said I would just pay for it and give me the damn bottle but they said that I wasn't allowed to just buy it outright like that bc of some other bs insurance rules.  And it was a weekend!  And I got the prescription from the ER!  So, I had to get his pediatrician involved and I was really pissed off that the doctor gave the prescription and the pharmacy had the medication and the insurance company had the right to withhold it.  What kind of crazy world is this?  But, it all came out alright in the end.  I was able to convince the insurance company their head was in their ass and they actually placed a call to the pharmacy to tell the tech what codes to use so that they could give me the medication.

So, he still had such a hard time with the cast that I cut it down from a full cast to a half cast myself.  He calmed down some eventually, but my poor son never really came back.  I am still having a really hard time with him.  He just tantrums so hard it is scary.  But it is not as bad as it was this summer. 

Don't get me wrong.  I love him dearly.  I am just catalogue-ing where we are right now.   

Tonite, after I cleaned up the poop, I was cradling him and we were dancing around the room.  He was calm with his head on my shoulder.  So, I sang to him and swayed him around while singing this song that I liked so much as a kid I thought I would sing it to my children someday.  And I do sing it to them from time to time.  But this time I couldn't get through it without crying.  And there we were in this room dim in the twilight, with me singing/crying this song out because the words had new meaning now with where we were in our lives.  The song goes...

I know you
I danced with you once upon a dream
I know you
The gleam in your eyes is so familiar a gleam
I know it's true
these visions are seldom all they seem
But I know you
I know what you'll do
You'll hold me at once
The way you did once upon a dream

I guess what makes it so sad is that before Ian was diagnosed I had such high hopes in life for what type of boy he would be, but that was all once upon a dream. 

Where do I start?

Well,the recession finally hit home with me.  I am looking to buy a new house and move out of this apartment, which was only a temporary arrangement bc of the circumstances & me moving in a hurry.  The only problem is I am literally scraping together money for a move & that includes selling textbooks and having rummage sales.  But what's even more depressing than that is the type of house I can afford is not the type of house I want.  When it comes to house shopping, you are paying mostly for the school district bc the same house will vary in cost to the tune of about 400 per month depending on what side of town you're on.

Typing with my index fingers on my IPAD, btw.  How do people type like this?  It strains your fingers.

Maybe I will get my money scraped togethor and decide to just rent a place.  The house I really like is 1,350.  The house I'll settle for is 1,100.  How much I really want to spend is $900.  I just want to live very cheaply so I can put some money aside while the boys are still young and don't care where they live.  Then, move into a better place when they are older.  I think it matters more to older kids to have a nice house.

So, I may just end up renting, after all.

Besides that, things with Ian have improved...He rides his Winther bike, wears big boy undies, uses some words & phrases.  But sometimes I am so worried about his future.  I was thinking of how I wanted to send my boys to some prestigious private school but I can't bc they don't have special education services.  And I really think I should keep the boys together so they can look out for each other.

My dream is to be able to send them both to a private school for high school.  My dream is for Ian to go mainstream with the nuero-typical kids by then.  My dream is they both graduate college and give me lots of grandbabies.  I will be an excellent grandmother and babysit a lot so that they think parenting is a breeze & just keep having more kids.  It's really a trick I'm playing on them so I can have more grandkids.

Whole 'nother level

Just got back from a seminar for parents on the spectrum and found out one fascinating thing that I think professionals in the field just need to notice. All the other parents were just so in tune with the universe on a whole 'nother level. As I got to know them I found out a little about their background. One was a farmer, another a yoga instructor, a snow-board instructor and outdoor enthusiast, a surfer, an all natural food-store owner, a meditation-ist (?). There were also mathematicians and engineers. It seemed like it was a group of people who just understood and were in touch with the universe on a more intimate note than regular people. That is fascinating. Most of the time all you hear is bad news about parents of children on the spectrum. They are refrigerator parents or they did something wrong, or they have bad genes. Let me tell you, that is not it. I am more of a mind now that these children were really given to us because for some special reason because from what I can gather the one thing we have in common is just how far out on the z axis we all are.

Winther Bikes

Good news autism parents whose kids don't ride bikes. There is something called a Winther bike for special needs kids thatyour child may get the knack of. None of those fakity-fake life is perfect with autism blogs would have told you that!

They go for about 500 bucks, though, so wow, yeah.

Last night at my son's Youg Athletes practice they had a few and for the first time after countless efforts, he actually pedaled! Now he didn't go roaring off and take a few laps and pass Lance Armstrong, which is what my co-bloggers kids probabaly did, but he did pedal and slowly make his way over a few obstacles he was not supposed to run over. I was proud of him. He seemed to lose interest here and there and would stop pedaling but then he would resume and slowly pedal away again.

There is better balance on the Winther bike and the pedals move themselves and yr kid justneeds to keep his feet on, then eventually manipulate the pedals themselves and presto, he's riding a bike

By the way, for those not in the know, Young Athletes is the Special Olympics training camp for 2-7 year olds. Because Special Olympics starts at age 8.

Now, I am proud to say thatIan is a strong, fast, coordinated boy. So much so, that I attempted to get him to play soccer. I maybe jumped the gun with that one because self-directed andco pliant are a few things he still needs to work on. So, while the other kids were doing drills kicking the ball down the field (wow, are those other 4-year-olds?), Ian was spinning around in circles in the field. Anddon't askabout gameday,thenoise, the excitement. He threw a fit, did not wantto be there at all.

But now, thanks to Young Athletes he is learning to throw and kick and jump on cue. He's getting there.

What Plastic Barbie Doll Ranks These Things Anyway?

I don't want to be a complete bitch here but then again why change the tone of this blog now? haha. But seriously folks, I have been asking myself lately what makes a good autism blog. I went to Google with my question. That is when I learned that for one thing, good bloggers proofread so that's the first place I am messing up. But then I was disgusted to find out the the blogs with the most followers and highest ratings are upbeat, humorous, and pleasant.

Now, personally, I think those are a hell of a restraint when we are blogging about our children's disabilities. I feel pressure from society, as a blogger, to always write about the bright side of a topic that for the affected parent is PAINFUL. To be honest. It is painful. It hurts. It makes me cry-for myself because I don't know what to do, and for my son because I don't know what awaits him. I try to remember to mention in my prayers all the little boys whose parents don't understand them.

But in order to break into the autism blog ratings, I've got to put a pretty bow on this shit. That's another thing top bloggers don't do, they don't swear alot.

Toy Swords and Real Autism Blogs Continued

I bought Riley a styrofoam toy sword for his birthday. He loves it. There is some gene that males carry that make them instinctually know what to do with a sword bc I haven't taught him how to sword fight but somehow he just knows.

Anyway, I went to get Riley out of the tub which he hates. He did his usual waving of his chubby little arms and wailing as I reached for him. Then I saw this spark in his eye as he remembered his sword. He shot to the side really quick and grasped his sword lifting it up in front of him at me triumphantly and swinging it around. Like the sword was going to fend me off. So cute.

Also, a note on my last blog. I did find some autism blogs that read like the real thing. They are not all parents of high functioning kids with few frustrations who are preparing themselves for canonization. Some of them are helpful and tell it like it is. Which is more comforting, you know, to read how a parent struggled with something but you read a later entry and they finally found a solution for themselves.

Some autism blogs are so fakity-fake, I wonder if it's more of a munchausen blog than an autism one. Seriously, if your kid talks and is in the regular classroom, what are your concerns? Your kid has blended! I don't see how that can still qualify as autism. Maybe you are one of those misdiagnosed cases I am always hearing about.

That is just me venting my frustrations and maybe a little jealousy for those high functioning types.

Oh. Shut. Up.

Autism blogs where have you been all my life? That's what I thought when I first stumbled into one. But I am let down. It's just a bunch of annoying twerps with high functioning kids who see nothing but silver linings. Of course they do. Their kids friggin talk for one thing. What do they have to be concerned about. Shame on them for calling themselves an autism blog when they are barely on the spectrum and have no idea, by what they write, the terrible see-saw of hope and disappointment that most special parents go through.

It goes like this. Maybe today, maybe today I will reach him. If not today, maybe he'll be ready for kindergarten. Not there yet? Maybe when he's 6 or 7. Maybe when he's 10. Maybe. And those milestones you wait for never come and you wonder if you'll grow old still thinking maybe today, maybe today.

Now here is something helpful, I heard about something called a special needs trust. That is something I need to learn about. I have been worried about my death. I dodn't know what resources were out there. I think I will look into that.

Is this really me?

I was just cruising through my old posts. I kind of think there is a disconnect between who I am to people who know me and what I blog about. My blogs are not filtered so there is a lot more frustration vented here. I really don't see the real me in my blogs.

Why do I do that? Hide me from me? Isn't blogging about being yourself?

I guess I just have to start blogging when I'm in a better mood or on a topic that I'm not erratic about.

For the love of it

Well, it's been about a year but I am finally running again but this time it's different. I'm not running bc I'm forced, I'm back to running for the love of it....and it feels pretty good. Just approaching running with a good frame of mind makes an incredible differance than when I used to face it with dread and coercion. So, happy day, I found my way back to running for the love of it.

Besides that, I was mentioning to a friend how so-and-so has a blog but it's vapid and dull. He said my blog's not like that. I jump in with, 'I know! I am the Quentin Tarantino of the mommy bloggers!'

Like I said...

Like I said, the IPAD sucks for making corrections, so pardon the errors in these posts!

What I'm Doin' These Days

Soooo, I moved out of my grand dream house, just like Julia Roberts in 'Eat, Pray, Love', in exchange for an apartment so I could work on my doctorate. That's where I left you at, blog. But so much has happned since then and not good stuff either. Basically, practically everyone who is dear to me wound up in the hospital, in wheelchairs, friggin' blind, you name it. I missed so much class in the first semester that I had to withdraw and I moved back home for family support. The good news is, PTL, everyone has pretty much been healed. The downside is I'm a year behind where I thought I'd be at this point.

IPAD problems

Thanks go to the kids for busting my laptop. I'm now doing these entries via IPAD, which makes my half-butt editing jobs even worse. And this cursor! Curse it! It will never do what I want it to.

I'm baaaaaa-aaack

So, I looked up a few people from my past on FB and found that one of them had a blog on here. After reading through it, I thought my blog was much better. Sure, I don't do anything with pictures but I have real meat and bones over here in my words. Theirs was just...vapid and dull. Like a sorority girl's scrapbook. Maybe that's what they were going for, though.

Wrap-up

Well, today is the day I move out of my house. This was my dream house when I moved in, I thought it would be the last place I ever lived. But instead it became my prison...partly b/c of the remoteness of it and partly for other reasons. These last few months have really been rough between me and the hubby. So, although I am moving out into a smaller apartment, I am excited about the future and finally feel like a free human being again--like my life is my own. I have lived so long without being able to make my own decisions about where I'll live that I feel... unshackled is the word that comes to mind.

That is pretty big news, but I also wanted to write about how the 4th of July went. The most magical moment was watching Ian's face as he watched the fireworks. He had an enthralled half-smile and I could see the reflection of the fireworks in his eyes. It was really a beautiful moment, watching the fireworks in Ian's eyes. Riley, was entranced as well, judging my his pointing and bouncing but my husband had a hold of him so I didn't get to see the close-up of his expressions.

What's next? I am off to work on another degree so I can be employed in a field I actually have an interest in. The future is bright.

I have been facebooking it up lately, contacting people I haven't seen in years. I used to only use facebook to spy on my nieces and talk to people I actually talked to on a regular basis. Now, I see the value in having a page just to connect with other people like extended family and old friends.

I think another thing that left me cold with facebook was all the has-beens from my high school who were on there, so whenever I would log on I had a page full of bad grammar slang and binge-drinking-party updates--and these are 30-somethings.

I felt guilty about de-friending anyone but these were all people I haven't spoken to in years and barely knew in the first place. Plus, they were really making my facebook page a crappy place to hang out. So, I de-friended alot of them. If anyone notices, the excuse I'll give is that I was job searching and only wanted professional contacts and family on my page (which is true in part) in case anyone wanted to look into it, they would see what a straight arrow I was. But all that just to say this, I don't want people who can't spell or construct sentences to leave their moronic ramblings on my page! My facebook page is a classy place.

Summer 2011

In September, when I look back at this summer in hindsight, I will remember the swimming pool with Ian bravely jumping in from the sides and Riley clutching my swimsuit for dear life.

I will remember riding the beach cruiser with the carriage attached to the back around the neighborhood, but never by the duckpond after the time Ian tried to jump out while the bike was moving because he was so excited about the ducks and the water.

I will remember my boys sweet identical brown eyes in the rear-view mirror and how we all three like country.

I will remember my boys piling in a dogpile on me, both clamoring for the biggest hugs, and me trying to hug both equally and simultaneously.

I will remember your faces at the fireworks.

I will remember chasing Ian on the beach and putting Riley to sleep in the shade of the umbrella.