shootingstars's blog

So where to begin... I am not even sure when I last updated, which should be a slap in the face I know...

Michael is off medications. He has had two cholesterol tests come back abnormally high. What I do not understand is if they are so high, then why not talk about diet changes or medication to regulate it. Instead now they want me to go a full month with no Risperdal and test again. But the thing is, and they will not actually listen no matter how many times I repeat, Michael was not on the meds regulary enough to cause an impact...

The Specialty Clinic who sees him is trying to phase him out. He does not even have the next appointment set up. They have lost ALOT of funding and rumors about already being closed (which I know to be false) and going to close. My family doctor admitted he cannot see them being open in two years. So He has referred Michael to a place called Season's Center which deals with counseling and all sorts of that crap. He goes on the 17th. If I am still not happy then I will demand a referral to Iowa City.

There was a mini thunderstorm earlier this afternoon and Michael is obsessed with watching the rain. Not that I can blame him, I love laying by an open window while it pours (as long as it does not come in and soak everything). After a flash of lightening Michael insisted that somebody took his picture. At first I tried to explain that it was just lightening from the storm but he insisted it was a picture from somebody in the sky. So I asked if God took his picture, and Michael immediately rolled with that. God took his picture. I have not really tried to teach anything religious to Michael. Ma believes that all children are born with the knowledge of God and as they grow and lose their innocence they forget about him., especially without the reminders around them. So maybe that is true about Michael. And since his love and mind are more pure and innocent than most at his age, I hope he can hold on to that knowledge...

I think the part of Michael's Autism that I feel is the least fair is he cannot seem to understand some people are bad and will hurt you. That they lie. And when it comes from somebody who is supposed to be there always and love you how do you endure seeing your child go on believing a lie, knowing soon it will tear their world apart?

 How do we teach them that somebody could hurt them. Michael loves so purely and unconditionally. And it breaks my heart to see somebody who should but won't step up to the plate...

David has one small chance before I turn him away and ruin it all. I never thought saying its over would hurt so bad. I always thought it would be a final frustration and relief, but my heart breaks for Michael... He knows fathers love their sons, he knows a family is a mom dad and child. But he doesn't understand why his family is not like this.

I guess maybe its better to believe the best in everybody and not know how cruel the world can be. Part of me wishes for that now. I wish I could be as forgiving as my wonderful son. 

I have not been blogging very much as of late. Not for my own personal blogs, my Autism Blogs, or here. I think I just lost a bit of a drive to communicate. Usually I write the most when I am really passionate about something, usually a feeling. Things have been fairly calm for me and Michael the last two months.

Dating back, my tests came back clean, no cancer, tumors, or anything really. The medication I am on helps somewhat, but I am horrible at taking it every day. It is really gritty. I need to try to take it every day so I can honestly say if it is helping when I go back in. I also have some liver tests go a little shady. So I have been avoiding the drink. ok I rarely drink anyways.

Michael and I had a home visit with his teacher yesterday. He is doing really well in group work. He loves projects and crafts. Apparently him and a little boy even played a board game all on their own together taking turns. He is dependent on his teachers, very attatched. But he has another year of preschool with him. That will mean he got 2 1/2 year rather than just one.  And most likely he will continue on in Special Education in Kindergarten. I think I am ok with that too.

Last week I had part two of my tests done, and things came back fairly well. So it basically looks like I just may have to be on medication for the rest of my life. A possible surgery but unlikely I will opt for it any time soon. My main problems now is recovering still from the tests. There is also a virus going around that kicks people onto their bums for a month, and I am still suffering. Right now I am just trying to keep off dehydration, and weasle food back into my system.

Michael has suffered a little bit of the cold but is doing well. He seems to be chugging along despite everything. I have come to the conclusion that my son is psychic. In the last few weeks has has made several predictions that seem a shade more than coincidence.

I think all the progression Michael has made put me in a different frame of mind, one not prepared for obstacles. But I guess it is like a ball rolling along and eventually there is a hill that you just cannot quite roll over, instead you find yourself rolling backwards.

I have noticed that Michael is reverting back to babble while playing. Some of the words he was saying clearly are getting slurred together in his short sentences. 

His behavior has slipped as well, even at school.

He is once again quick to tears. Which of course brings me back to the point where I am quick to tears.

I guess that just is a reminder that no matter how far we come, we can always slip back into old ruts. Take nothing for granted...

Since I am not getting to move like I oh so dreamed of, I threw myself into redecorating my apartment. I guess it needs to feel like a real home after 4 years. Yesterday after my doctor's appointment I picked up a new shower curtain and some towels. I need new towels because the neighbors all ironically have the same colors (dark red and blue) and I am tired of not knowing if they stole them or not. I lived here first and it is my towels missing... So I chose yellow, only they do not match my old curtain. Which was getting kind of gruddy. When Michael came home to find a new shower curtain with rubber duckies on it, he turned around hugged me and said Thank you Mom. He honestly believes I bought it just for him. I was thanked several times all evening.

So, with my health being questionable, I have given more thought about needing to get a will drawn up so that I know Michael will be taken care of. I keep telling myself, I have had these problems for years, so they are a little worse, I will be ok. But then the rational intelligent Holly slams open that door and reminds me that life is not that fair and you have to cover all bases. Better safe than sorry. I decided once I get my test results I will be contacting Legal Aide for a lawyer and drawing up a will. It sounds crazy but I actually want two different sets of decisions. One being if I know I am dying in adequate (not that there is really an adequate time to accept that) advance, and one being in case of tragedy... But when going over all my options, or rather lack of options, it makes me a little depressed. I am really all my son has, so thinking about failing him by not being here kills me inside. Ok bad choice of words considering we are talking about death... But in reality a will is something that ALL parents should think through. Not just those of us with children that require special considerations.

Ever since I threatened no more Susy if Michael did not poop in the toilet, we have been accident free. It is amazing what would drive a child to the point from constant accidents to full potty training. All because his girl poops in the toilet and he has to poop in the toilet to be her friend.

Although Michael does not say he pooped. He will announced "it dropped" nor will he push or squeeze the turd out, he drops it.

I am making a list of things about Autism from a parent's point of view. They all need to be positive, and in the form of one word sentences. EX My child can sit and paint for hours. or My child has a wonderful memory.

This idea came from seeing a tshirt that read "Autism is not a Tragedy, Ignorance is" So I thought I would make a list of parent's insights and choose the best ones to put on a shirt in some cute design. The entire list will be posted on my today.com blog.

I am in a tshirt kind of mood. I made two already for Autism, but they are not totally fantastic. One could be for anybody, but the other I geared towards a child wearing it. And yes I am tempted to make my mother order it for Michael :) But I really like the idea of this list being completed so that it can be shared with everybody, not only from my blog, but hopefully pasted on social networks and everything. Lets work on ending ignorance!

So... What is your favorite thing about your autistic child?