Thursday, March 5, 2009

Moving...

Hi ya'll. I know, I have been terrible at keeping this blog up but my situation with Trin has become SO manageable that I haven't really felt like I needed to blog about it in awhile.
We still have off days sometimes, but we nip them in the bud pretty quickly. I anticipate that there will be ups and downs as Trin gets older and I know I will want to continue to write about them, but I am going to keep everything centrally located :)
So I will be merging the posts on this site into my current blog in the next few weeks as I revamp my main blog.
If you would like to come visit me there, shoot me an email and I will send you the link.
h_mcelyea@hotmail.com

In the next thirty days or so, I anticipate this blog will disappear so don't delay :)

Tuesday, January 22, 2008

Parent/Teacher Conference

I met with Trin's teacher yesterday and realized an entirely new kind of hurdle.
When I first realized something was different with Triniti, I had no idea how I was going to survive being her mom. I didn't know what to do, I didn't know how to handle her. It was so frustrating for me as a mother to feel helpless.
I felt like I was the pilot of an airplane and it was spinning out of control and I had no idea how to right the course.
Luckily for me, I pushed hard and got a diagnosis and that felt like reaching out and grabbing the steering of the plane and as I read more and learned more I was able to gain control of the plane and have, for several months now, been in control of the plane. Sometimes there is turbulance but ususally we fly smoothly.
So when someone tells me that Trin is "fine", I have a tendency to get defensive.
They don't realize the amount of time and effort went into this "plane" flying smoothly nor do they realize the every day work that goes into it.
So when her therapist says that her AS is very "light" or her teacher says she doesn't see the need for additional modifications, it straight pisses me off. Because it feels like they are sitting inside the plane cruising along and I am in the front flying it.
I explained this to Trin's teacher last week and advised her to talk to Trin's teacher from last year and ask her about the hell we went through last year. I think she is starting to understand a little bit better the work that has went into and continues to go into keeping Trin on the right path.
It's just frustrating being alone in all of this.
Very frustrating.

Wednesday, December 26, 2007

Am I helping or hindering?

In the last few weeks it has become fairly evident that Trin would be perfectly happy to stay home. All the time. She has found a place where she is happy, safe, comfortable - you know, all the good stuff. There isn't anything at home that causes her anxiety. And every day she pushes a little harder to not have to leave the house. She doesn't want to go to school. She doesn't want to go to daycare. She doesn't want to go to the store. She is perfectly happy to stay home indefinitely.
And I want so very badly to let her. I want to quit my job and stay home with this amazing girl all day and see the happy and safe girl. The girl who has made amazing progress over the last year. The girl who barely exhibits AS signs any more. I want to hang out with her because she is awesome. And I want to help keep this girl at the forefront and say goodbye to the girl with tummy aches and heart aches and fear. I don't want to ever hear again about how she was picked on or how school "takes so long" or how her friends were mean to her. I want that little girl to never come out again because she breaks my heart whenever I see her.
Yet it is the opposite.
Instead of holing up in our house and me keeping her safe from the world and all of the world's stupid meanness, I have to stick her right out into it and teach her to cope.
And that sucks.

Thursday, November 15, 2007

Well, I met the new therapist yesterday...

She is a LPC (Licensed Professional Counselor), a NCC (National Certified Counselor) and a DCFC (Diplomat Clinical Forensic Counseling) as well as a LPC Board Certified Supervisor.
Phew!
But the more important thing is that I like her!
And for the purposes of this blog, we will call her Therapist Katie.

I am always nervous about meeting new therapists. I haven't had the best luck out there in therapy land and I'm never super optimistic about it. So I got to her office right on time and filled out all of the paperwork and then we talked for a little while.
I can't even begin to tell you how nice it is to have a conversation with someone who is knowledgeable about AS! My normal conversations about my daughter usually start with me prefacing them with ten minutes of Asperger info so to have someone jump in and bring up other AS traits was awesome. Someone who just gets it!
We talked about school and she told me that she doesn't believe Trin is even getting 10% of the in-school assistance that she should be getting. And you know what? It was so nice to hear! Because I always feel like I am being a pain and asking for too much. I always feel like I am playing the AS Card and there isn't anyone around to tell me whether I should be or not.

It was a good meeting. The only thing we disagreed on was medication.
It is my belief that Trin should decide whether to be medicated. And I feel like in the next few years she will be able to tell me if she needs it. The main medication is for anxiety and I just feel like she should be able to tell me that she wants something for her "tummy aches". It's is Therapist Katie's belief that AS children are not capable of making that decision. I'm thinking I will let them meet and work together and see what she thinks later.
I feel like we have made so much progress at home that Therapist Katie will just be floored and may change her mind about what my AS child is and isn't capable of. :)

Our next appointment is on Tuesday at 2:00p. I will let ya'll know how it goes!

Wednesday, November 7, 2007

Letting her be exposed...

I have a tendency to be a wall between her and the world.
I am especially a wall when I know that she is more susceptible to a quick mood swing.
One of these times is in the morning. I know that when she wakes up she can very easily turn from Asleep to Holy Terror. Because of this I try to keep our morning routine exactly the same...
5:30a - Get her dressed while she is still asleep.
(this is helpful for two reasons - 1. She usually wakes up while I am doing this and 2. There isn't the huge indecisiveness of trying to figure out what to wear and changing her clothes nineteen times...)
5:45a - Take her to the couch and give her a glass of apple juice. She usually will wake up enough when drinking her juice to stay awake.
5:55a - Turn on Stanley. We sing the "Oooh & Ahhh" song together and then the Stanley song and on a good morning she is fine after that.
This morning though, she was pretty cranky and when I took her to the bathroom to brush her hair she was teetering between Good Day and Bad Day. My brother was in the bathroom brushing his teeth when we came in (he is doing wonderfully at adjusting to living with all us chics and only having one bathroom! lol). Well as I am brushing her hair, he starts humming at her while brushing his teeth.
I almost turned to him and told him to knock it off.
I was so close to saying it.
But I happened to look at her in the mirror first to see how she was taking this unscheduled noise in her morning and saw her smiling.
Smiling.
His humming, his out of our routine action, decided her mood and pushed her into Good Day.
But more importantly, she learned this morning that something out of our norm can be good.

Tuesday, November 6, 2007

My greatest fear...

Taken from this article:
This gender dynamic doesn’t necessarily affect girls with Asperger’s when they are very young; if anything, they often fare better than boys at an early age because they tend to be less disruptive. In 1993, Catherine Lord, a veteran autism researcher, published a study of 21 boys and 21 girls. She found that when the children were between the ages of 3 and 5, parents more frequently described the girls as imitating typical kids and seeking out social contacts. Yet by age 10, none of the girls had reciprocal friendships while some of the boys did. “The girls often have the potential to really develop relationships,’ says Lord, a psychology and psychiatry professor and director of the Autism and Communication Disorders Center at the University of Michigan. “But by middle school, a subset of them is literally dumbstruck by anxiety. They do things like bursting into tears or lashing out in school, which make them very conspicuous. Their behavior really doesn’t jibe with what’s expected of girls. And that makes their lives very hard.”

After Trin's diagnosis last year, we stopped therapy.
I had been searching for a reason for all of the madness and once one was found, we jumped off the roller coaster and started to focus on rebuilding our lives and including AS as one of the bricks. I read up on EVERYTHING I could find and picked a few things to try and just put one foot in front of the other until we were moving along at a reasonable speed.
But I am afraid.
I can see her starting to get upset often about not having friends. She has cried when someone has said something mean to her. School can be a scary place for her when it comes to kids and playing and their attempt at structure and knowing that I cannot make everything right has pushed me back towards therapy. So in the next two weeks, we will start seeing a new therapist, one recommended to us by Any Baby Can.
And I am hoping that with new therapy she will stand a chance at making some friends and fitting in socially because it breaks my heart to see her struggle.

Monday, November 5, 2007

One day at a time...

Reason other parents will think I am insane:
I sent her to school today in a princess costume. It wasn't anything too frilly, just a dress made by my half sister's grandmother for my oldest daughter to wear on Halloween a few years ago. I made her wear shorts under it as well as an undershirt and I had to safety pin the back to make sure it would fall down off of her shoulders.

Reason I don't care that the other parents will think I am insane:
We got out of the house this morning without incident. In fact, she was smiling all morning.