Friday, January 7, 2011

Looking forward

The past week I have been working on the things in the near future...yes, to me August is the near future because of the amount of planning that has to go into everything and all the 'scheduling conflicts' and brick walls I run into...

Harley starts high school in August. Hard to believe isn't it?! In May he turns 14, which also means that he is transferred (so to speak) to the 'intensive adult supports' system. This can mean so many things to us, but the key areas of focus from my standpoint are:
1) as he ages, the supports and availability of supports reduce. The fact is there is less money for adults than there are for children. It's a fact of bureaucracy.
2) I have to "let go" and let him make some of his own decisions. No he cannot make life-altering decisions, or even recreational decisions on his own...the boy still can't safely cross the street (and I don't see -- being realistic -- that he will ever be able to). This is not because he cannot learn but related to his disability - and delayed processing...he just can't react fast enough to certain situations (such as a car traveling towards him :()
3) Out of home placement - not something I want to think about, but as he gets bigger - which boys are known to do between the ages of 13 and 19 - it may be a reality for us. I will have a nervous breakdown if I have to give him up in this way...but if it's a safety issue for himself or our family, it is a true reality :(
4) If something were to happen to myself or Andrew, we need to have alternate arrangements. At this point we have no one to speak on behalf of Harley's best interests - he would become a ward of the state. My biggest fear there is that they would put him into a group home and dose him with sedatives to the point that this sweet, loving, soft-hearted (most times) boy would be drooling in a corner.

But now I am getting ahead of myself...those are issues that must be addressed -- yes. Over the next two years or so. Our number one priority right now is trying to get him the supports he needs for high school. Seems I am going to have some issues with the staff at the incoming school - but thankfully the one issue I've had right off the bat (which is not a good sign) is not with his primary provider. Those who have been following along on Facebook know what I am talking about thanks to my venting/ranting there since Wednesday.

Tyler will be starting Kindergarten in August as well. Here in Colorado Kindergarten is 1/2 day unless you pay the extra 3 hours a day (I think that's what it totals to?). None of my kids have attended full day (other than Harley due to his special needs), so we will most likely stick with the 1/2 day program for Tyler as well. It makes my throat thick to think of him being five years old come May -- and needing school supplies -- where has the time gone? We are having some issues with Tyler mimicking Harley's behaviors in school as it stands now (he's in HeadStart for the 2nd year), mainly the aggression that he's picked up. People in general don't understand and even trying to explain that he has a brother with autism who acts this way so he is copycatting doesn't sit well (and isn't an 'excuse' I like to use). I have found over the past two months that tyler's been back in school that addressing his behavior issues as I would address them to Harley works...contracts, visual schedules, social stories and constantly reviewing the expectations. In fact since stepping back and starting to 'treat' it that way I have had less complaints and incident reports from school about Tyler.

Kelly will be a senior in high school. It's time to start trying to find a photographer for her senior pictures. She doesn't understand why we would want to start that here soon, but we have to have a picture done, approved and submitted by the 15th of September...and her being a 17 year old girl, I can only imagine how many of the pictures "won't be good enough" or "my nose looks big in that one" or whatever...Then add to it our schedules - summer time schedules only get tighter with Harley's summer camp and summer therapy routines.

Zachary starts Headstart Preschool in September. I sure hope he's potty trained by then. we talk about it plenty, but he's just not ready yet. I am so NOT ready to let him go, but again it's one of those lessons of parenthood that I MUST let him grow up. ***stomping feet*** but I don't WANNA let him grow up!! he is doing well. He's graduated out of speech therapy and is becoming quite a chatter box...he and Tyler argue all the time over who's gonna talk when! LOL

That brings us to Robert. This is adult son is possibly my hardest at this point. His anxiety disorder has taken over his life - completely. He cannot function without someone guiding him every step of the way. Voc Rehab has released him as being untrainable. His psychiatrist has told me (more than once) that I MUST apply for disability benefits for him. In some respects he may be as disabled if not moreso than Harley is. He did not have the support of Andrew and I as his family during his formative years, nor were we able to advocate for quality services for him. It shows, it most definitely shows. It makes me very, very sad. His disability claim is pending at this point and since he was still under 19 when it was filed, they are processing it as a disabled child claim. I hate to see him go down this road...and there is nothing I can do to change his ways. My heart is breaking over the stress I see on his face every single day, knowing he is not doing everything his friends are doing so far as jobs, school, planning futures...he just becomes so full of anxiety at the thought of moving forward on his own two feet that he literally becomes paralyzed with fear...which ends up turning into anger and I am afraid if he cannot find a way to control this, he will end up jailed. He is a short fuse just waiting for a spark to ignite it...and that is all it would take...with his anxiety and his anger management issues I don't even feel it is safe for him to operate a vehicle. It is just so so sad to know I didn't do the best I could for him, but my hands were tied by the judicial system giving the parent with the more prevalent financial background the benefit of the doubt. If I had only been allowed the opportunity, I would like to dream that it was possible his future would be different, but now I must deal with the here and now and not live in the past.

Again, I promise to be back to fill in more gaps. That is what I am facing over the next 3 months or so...along with the therapies, work and all the other things moms, secretaries, wives, get the point...have to deal with.

I hope that reading this has brought some light into where I stand when I feel like I am carrying the weight of the world on my shoulders. It is NOT that I am feeling sorry for myself (ok, yes, sometimes I am feeling that way -but screw it, I am entitled once in a while)...Of course I've not even touched on the issues that have come up between Andrew & I, MY personal goals or other issues we face on a day-to-day basis yet...
Stay tuned if you want to hear some of those...just not tonight...

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