Autism Experience

Reply to Visits

Sorry I didn't see the "Visits" posting right away. Don't mind me, I feel like little chunks of my brain are disappearing all the time.

Well, I guess you will always have a link to David, a cosmic link, and it's a good thing that he's the best guy you've ever known so far. It sounds like he isn't a deadbeat as far as child support goes. Does one child get his time and the other his financial support? That's a tough situation that he is in, two kids, two mother's of his children, time, distance, money, and his own youth, a bit of growing up to do, and some feelings of guilt, no doubt.

Did you say he has been talking about getting back together with you? It sounds like you are going to be more careful with your heart this time around, but you are maybe are willing to give things a try?

Well, I guess you could look at it this way, a lot of guys David's age are being deployed over to Iraq for seven months and then get to come home for four months. I heard of one guy stationed here at Camp Pendelton getting sent out four times in a row like that. Some Daddies don't come back. In either case, the mommies tell their young kids that daddy is far away and can't visit. So, in that regard, Michael is having a similar experience to a lot of his peers across America.  read more »

More Cute Pics from The Album

I tried to put these in a cute-pics forum, but it the site wouldn't let me, so... here he is before I gave him a buzzy haircut, riding an antiqu train, trying on my clothes, and dressed as Peter Pan.

Trike

Here's Wyatt being pushed along on his trike.  Obviously, steering isn't a priority for him! 

I thought this would be nicer to look at than that plastic surgery spam that got posted here. 

Dear Uncertain

I am so sorry that you have to deal with this extra hurdle in your life :(  Did Susan Baker give any sort of diagnosis, such as PDD-NOS?  (Pervasvie development disorder not otherwise specified).  Is there an appeals or second opinion process?  Can you call up SSI and ask for a supervisor regarding that MR waiver?  Maybe there are other "waivers" or maybe you don't need a waiver, maybe you could qualify on income alone?  Are you sure that High Functioning Autism doesn't qualify for SSI?  Anyone else reading this, do you have any insight???  I can't believe the system is letting Michael fall through a crack! 

Don't feel selfish!  Everything that you are working toward is for Michael.  You were just looking at one way to accomplish a goal, but you may need to take another path, that's all.   It's not that you hoped he scored low, not at all!  You know what is in your heart. 

If there is anything we can do, I don't know, like ask around on some autism Yahoo groups or other blogs or make some phone calls or something, let me know!  Maybe someone out there will have some good suggestions.  Meanwhile, hang in there!!! 

To Keeping Sane

Who says we are staying sane?  :)  (This is a reply to Shootingstars's post, I'm just having some technical problems--I posted a lovely reply yesterday that was promptly lost in cyberspace, so I am being forced to create a Blog entry as a reply).

Well, the obvious answer to "source of strength" and "shoulder to cry on" is a religious answer.  I think we all explore that in our own way and faith, even my husband the skeptic.  I think Faith is better than Xanax, plus Faith often comes with a support group of people to care about you, pray for you, and bring you casseroles.  But, although I haven't been short on Faith, I've been away from that scene for a while.  

All right, let's talk about the unreasonable burdens and demands that are placed on us Mom's of ASD kids.  Let's face it, it takes most of my energy to just take care of and clean up after Wyatt.  Meeting his basic needs, buying groceries, doing laundry, vacuuming, dishes, cooking, getting him from point A to point B all the time, that wears out any mom.  Now we add a layer of IEP meetings, therapy sessions, insurance paperwork, OK--I guess I can handle that.  No, wait, we forgot "parent training."  I'm expected to be a therapist, too! And a doctor, special diet chef, lawyer, teacher, researcher, and the list is endless.  This is our life 24/7.  But we can't live that life 24/7, it is just not good for our sanity.  read more »

Frustation

I just can't believe it sometimes.  I go to my grandson's house.  He is 7.  He seems happy to see me.  He reaches out for my hand and holds it.  Then he hits me in the face with his other hand and laughs.  I take him to his room.  He gets down on the floor and starts kicking at me.  I manage to pick him up and put him in his room.  I hold the door shut so he can't get out.  He is very strong and it's hard for me to hold on to the door knob.  After a while, he seems to calm down and I let him out.  Before I know it, he's at it again!  WHile he's trying to kick me or bite me or pinch me, he's laughing hysterically.  It all seems like a bad dream.  I don't know what to do anymore.  I feel like I'm in a mad house.   It's depressing.  Oliver has a sister who will be 10 in July.  She has to live with this.  I take her as much as I can but I can't help feeling that she's being damaged by having to live with a brother like this.  I worry about her.

An Amazing Two Weeks

I have to say that the past two weeks have been very intense and amazing for my son and I.  We have both grown tremendously.

As some of you know, it began with him literally giving me a piece of his mind by explaining to me that a few wavy lines drawn when he was very young was in fact a picture of his EEG (Another Way to Look at the Writing on the Wall).  It moved through his decision to invite about 60 people to a birthday party at a bar for his 20th birthday and with me helping him process the fact that he received only 6 positive replies and about 30 maybes.  Then came the worst day, the day that not one of those positive replies or maybes bothered to show up.

Although that was the most painful day, I now realize that it was the most important one because that was the day that I was called upon (by him) to be his real friend and we spent three hours in that bar together, mother and son, working through our pain together by making up a list of plausible explanations as to why this had occurred.  It took me longer than he - to forgive and to find the courage to move on, but with his help, I continue to work on it.

The next day, he forgave the two people who DID email him with apologies and explanations and he thanked me for understanding and for being there to help him get through it all.  He then made a point of going to someone else's party and found that he could still have some fun with the group (by overlooking their earlier transgressions (even the ones that never provided an apology).  He still hopes they will see at least how they can hurt his feelings or to acknowledge at least that he has feelings.  read more »

Captain Underpants

My kiddo likes to admire himself in the mirror while wearing his little underpants.   He will pose this way and that, standing on a chair.  When he is in a self-admiring mood he will bring me a pair of his underwear so I can help him put them on.  Any other time, he wants nothing to do with his undies.

Here's a picture of him up to no good, standing on a box, trying to grab our CD player from my closet. 

Science

I am worried about discrimination based on biased, inconclusive, incomplete, compromized, and "fuzzy" scientified "studies."  Groups like the Nazi's performed all sorts of grotesque and bestial reproductive (and other) experiments on the Jews as a propaganda that they, the [Jewish] victims were sub-homan.  In the same twisted way, white supremacist groups have lots of psuedo-scientific progaganda out there "proving" that other races are infererior due to reduced cranial size or whatever nonsense.

It disturbs me when I read about scientific "findings" that certain lobes of autistic brains may be smaller or certain neurons may be missing.  I worry that this information will be used to discriminate against our children.  Really, the brain is a powerful and mysterious organ.  Haven't we all read that theory that people actually only use 95% of their brain's true capacity?  If so, then what difference does it make if one lobe of an autistic person's brain really is a little smaller than that of a typical persons?  What difference does it make if someone is missing a certain neuron if the person can perform the same capability using different channels in the brain?  Of course, of course, of course, I am NOT against scientific research!  Quite the opposite!  I just don't want it to be shoddily done or to come back to bite my kid.  read more »

Feedback Loops

Sometimes it has helped me to think of ASDs more in terms of "intense communications breakdowns" as opposed to "mental disorders."  (Please note, this is not intended to diminish the severity of the problems, just to approach solving them from a little bit different perspective.)  First, a little communications theory.  We've all experienced misunderstandings; but when you think about it, it is really amazing that we are all able to communicate with each other at all.  If I throw out a word, any word, how you understand that word depends on your own experiences with it (which are, without any doubt, not the same experiences as mine).  That we come to approximately the same understanding of the word relies on how much alike our individual experiences are.  We know that people with ASDs suffer from sensory issues.  This means that on a lot of basic levels, their experiences do not approximately our own.  Hence, it is logical that they understand some words very differently.

Now, let me tell you a little story about my son.  read more »