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.