Tough week ahead

[Steely]

Well, yesterday I had to compile Matt's life history, and send it to the educational consultant. Boy that was tough, reading through all of those tests, and all of those documents, and all of the letters I had written to various doctors and therapists over the years.

Tomorrow the ed consultant and I are supposed to meet for 4 hours to go over in detail Matt's entire life. I am trying to mentally prepare myself for this, and detach, but it is hard. It is hard to talk about his whole life, and all of the unsuccessful interventions, and placements. It makes a mom's heart sick.

Tues the consultant flies to meet with Matt and talk to him. And then by Thurs we will have a plan in place to relocate him to a new place. My heart just leaps at that thought. This will be long term, thousands of miles away from me..............and he has no clue that it is coming.

I have gone from seeing him every single day of his life, to being thousands of miles away, and not being able to even talk to him. He has been told he will be home in 4 months, because that was the original plan with this place. Now someone will have to tell him he will have a new placement, and probably never be coming back, and I am not sure if that person will even be able to be me. It makes me physically ill.

I am trying so hard to detach, and not feel what he may be feeling, but still.......this week elicits pure panic in me. Total PTSD stuff. I feel like a wild horse inside.

Fortunately, for the first time in my life, I have found a really good psychiatric dr for myself. One that, for the first time, I am building a bond with, and who is helping with some medications. I am trialing a new medication for depression that I had never even thought of - and he has XR me Xanax to get through the next month. And of course I have my counselor.

None the less. This week is not one that I would want anybody to endure, let alone me.

And on a somewhat funny note, but not really - the 2 VPs of our company are coming to town smack dab in the middle of this - and I get to spend every waking minute with them, including taking them mountain biking and nature hiking. (I work for a large outdoor company - so apparently they think it would be bond building for the VP and measley supervisor to mountain bike together - never mind the fact I do not like to cycle, at all. And I am not in that great of shape, and the last time I mountain biked I hit a rock and pummeled myself 25 yards in the air and down a hill. ) Whatever. Life.

 

[Andy]

Sending extra strength for this week. The time with the VP's will fill your excersice needs. Focus on your healthy diet and get plenty of sleep. Stay healthy!

I am so glad that you found a doctor for yourself that you feel comfortable with.

We are here - write whatever/whenever.

 

[klmno]

Whooo, boy, what a week ahead. Will the ed consultant tell M that he's been in contact with you? Has he mentioned other places M can go to yet? I think I would find it depressing to have to go thru all that paperwork on difficult child, too.

Can Residential Treatment Center (RTC)'s be successful if the kid is closer to home and you can visit after a certain period of time? I don't know anything about them, so I wondered if it could help them if they had visits, yet still worked toward independent living- more like the real world would be.

I hope the visits from the VPs serves to keep your mind off things, maybe you can turn it into something fun. I hope so- you sure don't need more stress on you, especially right now.

 

[KTMom91]

Sending hugs, lots of love, and extra strength to help get you through this week.

 

[totoro]

Well at least for this week you have your mind full. It sounds like you are moving forward, I know you don't have a choice, but moving forward in an attempt to remain and stay healthy.
These steps sound so hard I truly admire you. maybe you can burn some aggression off biking.
M is lucky to have you

 

[Wiped Out]

Steely,
We'll be with you in spirit. I'm so glad you have found a good doctor for yourself. Truly I wish I could wave a magic wand and make it all better. Prayers.

 

[Marguerite]

"Indefinitely" doesn't mean "never". I mean, at some point he will have to graduate from wherever they send him. What about when he's 30? Realistically, all that's happened is a shift in thinking from a definite time period, to a placement that is probably longer-term, but with different graduation requirements. This is a GOOD thing - it means that they're no longer thinking just in terms of respite for you, they're thinking in terms of treatment for him.

In all your dealings with this over the next week, keep telling yourself that this is for now. The aim now is to treat him, to deal with whatever is wrong (of all the things that have piled on top of each other) and help him learn to manage his condition to the point where he can once again function as a productive member of society.

He is close to being a legal adult. He needs to be taught now how to function as an adult - to manage his own life, to hold down a job, to get on with people, to keep himself safe. It is not going to be on anyone's agenda, to put him somewhere permanently, to shut him away from life, from society and from you. It just won't happen. Not without a criminal conviction for something pretty huge.

Keep your focus this week on the bare bones of the information. Don't look on it as a series of failures - instead, look on it as a comprehensive list of the scope of your diligence as a parent, to do everything possible for him, to cover as many options as possible in your efforts to get help for him. In all this information there is valuable knowledge that can make life easier now for all people trying to help him, including you.

Think about it - if you had done nothing for him all this time, then now is when they would have to begin from the ground up, to try all these things. But you've already been there, you've put in all that spadework. Documenting this so thoroughly means that they can examine it all and have a much better idea of what they can try now, with the best chance of success.

When you know what hasn't worked, then you have eliminated a lot of possibilities. If you don't know, if you hadn't kept all those notes, then they would have to try all those things all over again. A lot of time wasted.

So keep this in mind as you discuss his history. As you discuss it all, think about how hard you tried this, how long you worked on that. Is there any chance that a slightly different approach to one of those methods could work? Or did it really get tried, so thoroughly that there is absolutely no room for giving it another go? Only you have this information - because you are the one who has done so much hard work.

None of your efforts were a waste of time, even if they didn't work. A scientist trying to find a cure for cancer might have a hundred different possibilities to explore. Every time he tries something, it turns out to be a dud. After spending a lifetime working towards a cure for cancer, he's tried maybe 80 of those possibilities, and all of them were no good as cancer cures. But does this mean his life's work was for nothing? Of course not - when he retires, all his efforts (even though they were negative results) are available for others to check. If he kept good records, it doesn't matter if he got no positive results. What it DOES mean - 80 possibilities have been documented and found to not be the answer. Of the original hundred possibilities, only 20 are left. A cure for cancer is now much closer.

The message for M has to be similar - "You won't be coming home after 4 months necessarily, as was originally planned. Instead, a placement has been found for you where they can help you work towards a more long-term goal, so you will be able to live independently when you leave, finally able to manage on your own, living productively. We don't know how long it will take - a lot of tat will be up to you. But know this - you won't be tossed out on your ear just because some arbitrary time limit has been reached - we are in this with you for the long haul, however long it takes."

Yes, he will be a long way away. It might make it easier for him to realise that now, his future depends on him.

It IS a big change for both of you, going from such long-term close contact, to no contact. But at some stage in the future, this will be far behind both of you.

Marg

 

[nvts]

Oh Steely! You sometimes twist me up in knots when I read your posts...I was nearly in tears about putting everything together for M's evaluation, etc.

Then I got to the part about you riding with these execs and I was hysterical!

All I could see in my minds eye was you mountain biking (helmet, pads, etc.) with these two gorky looking guys in suits, briefcases, and helmet, pads, etc. and you going over teakettle!

Allow yourself to enjoy the week. Allow yourself to embrace the fact that you're getting help for M. Just don't allow yourself to shoot down an embankment!

Beth

 

[Steely]

All I could see in my minds eye was you mountain biking (helmet, pads, etc.) with these two gorky looking guys in suits, briefcases, and helmet, pads, etc. and you going over teakettle!

Beth

Beth...........YOU made me laugh. That is the scenario in MY head too! I might boycott biking with the suits and opt for my feet and the hiking trail. Personally I like to be grounded, (in ALL ways. )

The good thing about all of this, is that the places I am looking at for Matt are over 18 facilities, basically structured group homes that teach independent living skills for these kids. None the them are or can be an Residential Treatment Center (RTC) because he is over 18 so they can't be locked down. They will have to be inclusive to real life. The kids will have to go to the facilities school, and do vocational activities, community service, nightly group therapy as well as individual, etc. However, and the reason it needs to be far away, is because if he opts to leave, there will really be no place to go. They keep his ID, so he will not have money, or ID, or anything to create a life unless he chooses to be homeless.

Now for some kids this would not work. I thinks some would find the local drug dealer on the corner and be gone, but for Matt, it is not in his personality to do that kind of thing. He might try it, but my guess is he would be back within 24 hours to the facility. He craves structure, and comfort.

So keep your fingers crossed for us finding the perfect placement. There are many, and I don't want to make another wrong choice. I talked to the educational consultant for 3 hours today, and I thought it went pretty well. Interestingly he did not think I had done nearly enough testing on him - which surprised me as I feel like that is all I have ever had done. So more testing is on the books, which I feel good about.

On another positive note, there is another manager at work whose son has AS. His kiddo has been on some of the pathways of my own child, but is now pretty stable. I just hired him, in addition to my other difficult child employees, and I am really looking forward to mentoring him and being a life coach of sorts. At the very least, I hope to make a positive impact on his life skill development. This is the aspect of my job I love the most, I think. I have one mentally challenged employee, and now 3 difficult children..........and I am able to influence and help them in a way that most other bosses would not even get or have the patience for, unless they had a difficult child of their own.

Hmmmmm.........I guess that is why we call them difficult children, huh.

 

[TerryJ2]

I hope to make a positive impact on his life skill development. This is the aspect of my job I love the most, I think. I have one mentally challenged employee, and now 3 difficult children..........and I am able to influence and help them in a way that most other bosses would not even get or have the patience for, unless they had a difficult child of their own.


That's incredible, Steely. Awesome. Would you have ever imagined you'd be in a position to teach others? Life is amazing. You GO!!!!!!

 

[Lothlorien]

Now someone will have to tell him he will have a new placement, and probably never be coming back, and I am not sure if that person will even be able to be me

I probably missed this, but why is this? I don't stay up on General too much, so sorry if you've answered this before.