Friday, April 29, 2011

Things are Looking Up

The past few weeks have been difficult and stressful around our house. A great deal of that can be traced back to me - I've had less patience, have been holding on to the stress, I've felt ready to snap at any moment. There were times where I vividly imagined grabbing my passport and heading out the door. I even researched flights to various far away lands.

But alas - I am here. I am digging my way out.

C has been having a hard time of it. I don't believe my mood is completely responsible but I do know it has contributed. This is also historically his hardest time of year, right around Easter. We have never known why (though we have some working hypothesis) but we just know that we should prepare for huge mood swings at this time of year. I had hoped we might escape it now that we have the BiPolar diagnosis and he has been on meds for it for many months. But while the meds have certainly stopped us from hitting rock bottom there is a definite amount of mixed mania and depression hitting him, rapid cycling that is so rapid it leaves me shaking and completely exhausted afterward.

I've also had some very stressful meetings with Corbin's "team" over the past few weeks. His current plan is not working for him or for us and we have been trying to figure out how to change it. Its not easy. There are so many restrictions placed on us from varying Ministry bodies (that I cannot get into on this blog) but lets just say that I find it mind boggling at this point that it is not funding that is holding us back but rather trying to find approved service providers who can work with us and our son to create the life that he needs.  I know I am being vague here - and I really wish I could write more. There have been things said and done to me (and our son) the past several months that would make your jaw drop.

But today I took a step - I called and gave notice to our current treatment centre that we will be phasing away from their services as soon as possible. We are meeting with another agency Monday to start brainstorming how to create what our son needs and from this agencies support over the past few weeks we are really optimistic and hopeful for this process. To be truthful I haven't felt those emotions in quite some time and it feels good to know that I do indeed have a range beyond panic, grief, anger, frustration and numb.

The sun is finally shining today, I had a relaxing lunch with my mom and my headache has finally gone away. Things are looking up.

Wednesday, April 20, 2011

Bite Your Tongue

When people are pregnant they take birthing classes of some sort and to adopt domestically you take adoption classes. This is all to prepare you as much as possible for your upcoming role. I get it that no class can teach everything there is to know about the upcoming journey in either of these situations. But you get a little more prepared, you find out how to get more information later if you need it, you hide under your covers at home and hyperventilate about what you learned in class and wonder why everyone else seems so freakin calm. 

What they need to offer people who have a child with a disability (or special need, or challenge or whatever you politically/philosophically wish to call it) are mediation classes. We need to learn how to become expert negotiators - how to be firm but calm, clear in our expectations but finding a way to make the people sitting across the table from think the whole thing is THEIR idea. We need to be skilled negotiators, special education lawyers, poker players, skilled salespeople. We need to be able to get the other party to "yes", all the while maintaining our dignity and the relationship - without the relationship with the other party(ies) we have very little hope (I'm stubborn, I will never say NO hope)

What no one tells is that even though it is our child we are discussing and everyone goes into meetings knowing that it is natural for us to be emotional and sensitive during these talks, the truth is we have to live up to an almost impossible expectation. Other people will be allowed to deliver their criticisms of us and our child, they will be allowed to give their opinion loud and clear, they will be allowed to get defensive and perhaps even mess up and be offensive. However. Us parents?? Don't even think about it.

Try not to cry - they will take it as a sign of weakness and dismiss you
Do not yell - they will stop listening to anything you say EVER
Do not personally attack - they will be affronted and everyone around them will close ranks and hold it against you
Do not state your opinions too strongly - they will all go on the defensive and that wall will be up faster than you can shut your mouth closed.

Apparently no one has told them not to do this to us, the parents. Apparently it is a free for all and if you complain you run the risk of just getting labelled as a trouble maker.

You hold yourself accountable, follow all the "rules", you remain calm in every instance and put your heart and soul into trying to make a very difficult situation work and still . . . .

They decide that you don't know what you are talking about, they dismiss you as "impossible to make happy" and they stoop to levels that are mindboggling.

But you hold your tongue and you calmly tell them that you are taken aback and deeply offended. You force them to finish having a civilized conversation while the person you brought to the meeting for emotional support writes everything down and yet they still keep saying reprehensible things. You don't just sit back and take it - you respond and ask questions but you do it in an eerily calm way. You leave the meeting shaking but in a way relieved they have showed their hand so clearly. You are thankful that even though they made the tactical error of taking off their gloves and fighting dirty that you had the presence of mind to keep yours on. You battled gallantly (and their blows certainly hurt) and hopefully one day they will look back and feel ashamed of themselves.

You know that you did what was necessary, that stooping to their level would not have helped. It would have done irreparable harm and would have taken years, if ever, to build back up to just the levels you were at before the meeting. Retaliation is not the answer. You did the right thing.

But man it sucks.

It is tiring being the only one in a room that has to hold themselves to such a high standard. Having to share and expose your family to "professional" after "professional" and most not even of your own choosing. It is horrible to know what your child needs but to be at the mercy of others to make it happen. It is horrible to know that you must strategize relentlessly about your child's life. I said a long time ago I don't want to fight.

Why can't we do things just because they are the right thing to do?????

Tuesday, April 12, 2011

Some Days

Some days he has these big ideas and strong opinions and I just smile and nod and calmly find ways to distract him

Some days he yells in my face and threatens me and I just take a step back and firmly but calmly tell him what needs to happen

Some days he is dysregulated and I grab him in a bear hug and I tell him we will make it through together.

Then there are the days like yesterday where I totally lose my shit

Days where I can't take being yelled at and defied and delayed from taking his younger brother to an appointment.

Days where I yell and I am not a therapuetic parent and I storm around seriously wondering how on earth did I get here and how much a one way ticket to somewhere far, far away would cost.

But by now I know by now that the bad Some Days pass

and tomorrow has the potential to be a good Some Day.

Friday, April 08, 2011

Good Enough

Recently I posted on Hopeful Parents about my son's heartbreaking cry for help and understanding.  As one commenter asked

I am sure that post was tough to write, but after it was written ---did you feel a bit of relief?
Truth is, even as he sat and sobbed (and I sobbed) I felt relief. I knew that this arrangement we had for him was not working. I was trying to plod along and make it work. I hadn't wanted to let my own feelings and misgivings dictate what is good or not good for him - there were so many positives to his time at this facility originally. I can't say too much about all of the particulars but C breaking down like that made me realize - no matter every one's good intentions this will never work for him. It's not meeting his needs and we are going to kill his spirit if it continues much longer. So I felt relieved that it was now going to be over. We could move on and I could be strong in my resolve that this was the necessary course of action.

We know our son, he does not need punishment and isolation. He does not need to be fixed. He needs structure, loving, kindness. He needs skilled people surrounding him who can help him process as soon as the bad moments have passed. He does not need to be judged. He does not need to be something he is not. He needs people who have gentle hearts and a butt load of compassion and patience.

But it also wasn't as easy as just declaring war on this facility that is charged with his care and treatment. The world my friends is not just black and white, right and wrong for the most part (I proclaim this as much for my own learning as it is for anyone else). Shades of grey abound (much to my chagrin as well as C's).  This is an important lesson for both C and I. Sometimes you need to cut and run, sometimes you take a strong stand with a sword in your hand. Sometimes you need to take a strong stand without any weapons all the while exuding love and compassion. I believe my son does the best he can. And as I have said before, I also then believe that (in most instances) others are doing the best they can as well.

It was worth it to try to educate and discuss and problem solve with this agency. And they have tried. The have worked hard. We all have. In the past I have made the mistake of thinking that because something is not working for my son that this means I must declare war on the people "committing" these "crimes" against him. What I know now is it is possible for people to have the best of intentions and still be so completely wrong for my son it makes my head spin.

 I cannot change a whole system. I alone cannot change an entrenched systemic belief that punishment will garner good, productive citizens. C cannot be left in that environment any longer. Other kids who have been there have succumbed to the pressures of the unflagging punishment and control. I believe their spirits to have been broken.

That haunts me.

But for C we will begin to move on, we will find a way to build what he needs. Even when it seems impossible we will forge on. Because we have to. Because we have no choice. Because we have to hear his voice and take action. Because he deserves it and he IS GOOD ENOUGH.

Tuesday, April 05, 2011

To My Son

I hear you loud and clear

Life has upended on you

Upsetting voices invade your thoughts

Intrusive thoughts race through your brain

taunting, haunting, egging you on

I see that you are struggling

I see the torment in your eyes

I feel your desparation

I hear you

We are listening

We are working

We know you are wonderful and good

We know you need people on your side

people who see past the "behaviour"

We know you are tired

and overwhelmed

and we are trying not to be right along with you

We hear you. We see you

We are here

We aren't going anywhere

We can do this

Monday, April 04, 2011

If He Comes, Will they Build It?

You know that saying from Field of Dreams . . .  "If you build it, HE will come"

I'm wondering does it work the other way?

If our son needs something that doesn't exist in our community - if we are able to do the right things will it get "built" for him simply because he has come and is ready and waiting? 

Some people think I am delusional for thinking we can individualize in a system so entrenched with "programs" and outdated cookie cutter approaches.

But, you know, I'm okay with that.

The guy on Field of Dreams was thought to be delusional. And  look what he accomplished.

(okay, no one point out to me that Field of Dreams is a work of fiction - we all need inspiration at times no matter the source).

Friday, April 01, 2011

What Haunts Me

"Mom" he says softly and I am startled by his sudden speech. We had both been sitting quietly, a rare occurrence.
I shift my body slightly to look at the top of his head as he in turn looks to my eyes. Our eyes meet briefly and in that moment he knows he has my attention and he looks away, seemingly looking out the window in front of us
"You know that kid Devin, that small kid that is always angry?" he asks
"Yes" I answer, for I do indeed have a vivid memory of the small spry boy that spewed forth expletives I had never heard before and whose punch to the arm of a staff I could hear from across the room.
"Well, Devin, he doesn't have a family . . . " his voice catches and I feel him begin to take deeper breaths. I can tell he is trying not to cry. I stay very still, knowing that to move or to speak might stop him from continuing to say whatever it is that is causing him such grief.
"And . . . well . . " he continues, struggling through tears to even get the words out "if I didn't have a family - well, I'd be mad too"

All the kids that never make it out of the "system" and have no one advocating for them, they haunt my days and nights. I shared this with a friend yesterday who was once my Manager long ago before we adopted C and she responded "I too worry about all of the children who don’t have people to believe in them and understand them, or even to belong to!"

We all should belong to someone.