Frivolous Indecision

Current Mood: Cool

We got the information from our attorney yesterday. It looks like our court date for guardianship is April 2. We were given the name of the court appointed attorney that has to come out and interview Payne. They will be contacting us in the next week. We were also told that a sheriff will be coming out to serve Payne with “guardianship papers”. That ought to be interesting. haha! The attorney will determine if Payne is capable of testifying in court. I am glad we started this process back in December. The court date is 2 weeks after his 18th birthday and that was the soonest we could get in. This will be a challenge not that it will be hard to prove that we need complete custody of him but just having to do something like this is never really fun, is it? lol It really has been a long road with him. While I wouldn’t take anything back with him, I can’t deny that it has been hard. As much as we have missed out on so many “normal” things what we get in return of him being in our lives MORE than makes up for it. It is hard to explain and no one really understands it unless they have a child like this. It changes your entire being….as a parent, a person. It changes your perspective on life, emotionally, intellectually, physically, in every aspect. I do wish things were easier on him. I see the struggle in his eyes daily. I hear it in his voice. I know he has so much that he wishes he could share but he can’t. What touches me are the people in our lives that truly make an effort to get to know him. Who aren’t afraid of him. Or who take the initiative to have a relationship with him on his level. We have had people who have taken the time and effort out of their own schedule just to be around him, knowing that he may not respond. We have had people willing to change things just so that he can be included. We have had friends willing to have gatherings at our house just so we can all be included. We have had friends who know and understand his limitations and have been very considerate of our limitations because of him. Coming out to Kansas City has given us a network of support that has no comparison and I am grateful for that every day of my life. When friends give so much of themselves in order to be a part of our lives and help us they truly become family in so many ways. No matter what has happened with him in the past year especially, medically, physically, developmentally, I have the best level of support and understanding from those close to me I have been able to talk to about the struggles, the trials, the concerns, the joys, the funny, the sad, and the frustrating. As I start this new phase of our lives that include guardianship, medical issues, disability, social security, medicaid, transition into adult programs among many other things I am so glad I have people who care, who make the effort to know what is going on with this amazing boy young man, whom I can lean on as well as laugh with; I know that I am so fortunate to have such generous and compassionate people in my life here where I feel so much as home.

Now if we can get him to leave the house I will claim success on my parenting! LOL

Here are a few of his favorite songs that he likes us to sing to him…. *This one he listens to ALL the time….I have it on his Ipod for him.*

He will sing this with the music…I love it!

This is one from when he was very little….He LOVES this song!

These songs really tell you the kind of person he is.

With some of the issues we are dealing with Pooh it looks like the adoption quest is off. G and I had quite a few discussions and with much thought and prayer we realize that the focus needs to be on keeping Pooh in the home. This transition into puberty has been difficult (to say the least) and it has not been fun either. We took him back to the Psychiatrist and we have moved him to another medication. We are really hoping that this will help him. I have to say I am lucky to have G helping me. He has no problem dropping what he is doing in order to help out with Pooh and his needs.

Speaking of Pooh. He had his SIXEENTH birthday party. HOLY COW! I’m too young to have a 16 year old. (haha…dad and you are too young to be a grandfather, right? ) Anyway he was SO cute when we sang to him. Here are a few pictures…

The other night CNN had a special focus on Autism. It was a good segment. Any kind of awareness is GOOD. I have never been a huge fan of Jenny McCarthy but I have to say I was impressed at her willingness to take the vaccination topic on, and on national TV. I WISH there were more celebrities that would take such a stand. I just hope it helps….especially with the potential dangers of vaccinations on young children.

And because this is his favorite song….

So, admittedly, this summer has been less then fun on several levels. Not that we don’t enjoy summer but some of the challenges that we have faced have been a little draining and time-consuming. Hence the long absence from the blog, the inability to remember important dates, and the overall non-communicative tendency of my nature as of late.

One of the biggest things we have been dealing with is P. His behaviors have been getting more and more unpredictable. To the point where he has not been able to attend church since May. He is one two different medications. To help him with impulse control and to help him with rage control. The rage control hasn’t been really effective. Summer is always hard and he is always unpredictable because of the lax in his schedule and schooling. Not to mention the sheer lack of structure not only at home but at the summer program as well. Bless his heart, I know he tries but I also know that this is the hardest thing for him to deal with. And, with stress comes behavior issues. It finally came to a head last week when we had several extremely bad meltdowns and the self-abusive behavior has progressed. I love my son to pieces and it tears me apart to have to try to keep him from hurting himself. Not only that but when I try to intervene he turns and I become the target. Now, dont get me wrong he isn’t abusive nor is it terribly violent. (Think of a 2 year old tantrum and now put that mentality into a 15 year old body.) Anyway, after a long discussion about more than just medications (like about possible future living decisions, and quality of life, and wanting what’s best for him compared to what we are willing to settle for in order to have him home, etc.) we decided that we needed to adjust his medications yet again. The problem is the health risks involved with some of the other medications. And, the sheer unpredictability of whether they will really do what they need to do. We have opted to keep him on this medication which has the least amount of health risks and try to combine it with a stimulant. This was not an easy decision and if it doesn’t work we will have to go with the heavier medication which will, of course increase of the more alarming health problems he is at risk for. At this point in time, however, we want to give every option possible a try before putting him on something that will put his health real danger.

needless to say the past week and weekend has been emotionally and mentally draining…oh well, this month has been emotionally and mentally draining. From the research and talking and talking and research and discussion and praying and more discussion….my mind just hasn’t been real with it.

I really don’t care about the meltdowns as much. yeah they aren’t fun and it hurts when you are getting pinched and hit at…LOL But, it has been very eye-opening to see just how hard it is to care for an adult with this kind of disability on your own. We have decided to look into what kind of assistance we can get from the outside and what kinds of services are available. I know that we should have looked before now but when you don’t know if you are going to need it, it is hard to know what to look for. (I’m not even sure that makes sense.)

Today was a good but hard to talk to the psychiatrist about E V E R Y T H I N G and not feel it emotionally aftward. I’m lucky that I have someone who can help balance me out when I get those panic attacks of helplessness. I fear that the other kids are going to resent some of the accomodations that we have to make. Or not appreciate him for who he is and the amazing spirit he brings to our home. I don’t think they will…but I fear that something like that could happen. Hopefully our decision today will be a step in the right direction. And, if it isn’t there are about 15 other directions we can go so it isn’t like we are out of options. HAHAHAHAHAHA!

Top it off I get a call from the school saying that if we didn’t have his physical form signed by the doctor he couldn’t go back to school tomorrow…yeah, thanks for the heads up on that. LOL Fortunately our doctor has a kickin’ nursing staff and they got it signed and faxed to me within 30 minutes of me dropping it off.

So…..now that I have blogged this long and self-absorbed post how about a little light-hearted music?

I watched the Oprah show yesterday. This woman has MORE influence over media than any other person and I was a little disappointed in how she chose to portray those of us who live with Autism. I think the awareness issue was handled well. I think that the struggles were touched on. But, for the most part I feel as if she portrayed Autism as a tragedy. I don’t know about anyone else but I don’t look at my son (or my daughter) as a tragic person. I was disappointed that the way these special souls touch lives was NOT touched on truly at all. Only the heartbreak…the heartache…the problems….the missed lives…. I swear if that blond chick said ONE MORE TIME that she wanted her son back I would have reached through the bloody TV and strangled her nuerotic little head! HER SON IS SITTING RIGHT IN FRONT OF HER!!!! Maybe not the 2 year old she started to get to know the boy who is NOW there and developing – no matter how slowly or with whatever difficulties – he is THERE. He wants her to sit up and take notice of HIM and his personality NOW.

Look, I went through this twice even. I went through thinking your child was going to be one way and then finding out that is all gone and having the mystery of trying to raise a completely different type of child. I GET IT. But…and this is a BIG BUT….he is STILL there….in front of me! It has been years since I wished for that two year old back again. Once I was able to see the blessings of who he was with autism I was able to let go of the life I thought I wanted and embrace the one I have. I was saddened to hear ONLY THE FATHER talk about how much his child has taught him and that HE has changed and is a better person because of what his son has to go through. How sad that there wasn’t more of that. That there weren’r more parents who were embracing who their children were with the autism. I don’t know, maybe I have gone too far to the other end. I have said it here and other places before – I would NOT want to cure my child. Why? Because it would change who is as a person NOW. Why would I want to do that to him? I LOVE him for who he is NOW. To cure him would leave him without so much of who he is….

For now, I love him. I help him with things I can help him with. His siblings help and we all enjoy him. He has a different purpose in this life. He is here to help others change who they are. For nothing else, I firmly believe that. He has the ability to help people in ways that no one else can. I am lucky that he is in my life. My life is better. I am better. As hard as it may be from time to time, the rewards FAR outweigh any sort of trial or issue that we have encountered. I can’t imagine my life without him. I wouldn’t even want to.

So before people think that families who deal with autism are these tragic souls who have nothing but heartache…look past the media drama and get to know these souls and the delight that they bring into life around them. I promise you, you will not be disappointed. You will be a better person for it. It will change you, forever.

I dreamt I dwelt in marble halls with vassals and serves at my side, and of all who assembled within those walls that I was the hope and the pride. I had riches all too great to count and a high ancestral name.

But I also dreamt which pleased me most that you loved me still the same, that you loved me you loved me still the same, that you loved me you loved me still the same.

I dreamt that suitors sought my hand, that knights upon bended knee and with vows no maiden’s heart could withstand, they pledged their faith to me. And I dreamt that one of that noble host came forth my hand to claim.

But I also dreamt which charmed me most that you loved me still the same that you loved me you loved me still the same, that you loved me you loved me still the same.

Okay so I’m not a big fan of Oprah. Well, I’m not even really a fan. LOL But today she is dedicating her show to Autism. So…watch if you can. It will be interesting to see how someone as powerful in the media as she decides to portray the disorder.