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.

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?????

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.

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.

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

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).

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.

Busy & Bumpy Days

The last few days have been very hectic for me. For a year I wasn't able to work as we travelled back and forth for C and tried to get our lives to what we consider "normal". In that time I actually started to embrace being a full time parent. However, I need something for me outside these 4 walls and we could honestly use some money coming in as having a child hospitalized 2 hours away and a significant cut in income can really cut into savings.

So about a month ago I was fortunate enough to be asked to take on a small part of a project geared to helping our community rethink housing for individuals with disabilities and other needs in our community. It hits home for me and I've immersed myself in all the research and community outreach. Much of that work culminates today in a community forum. We had hoped to get 75 people in attendance. As of last night there were 148 registered and the calls and emails continued to come in.

On the home front C has had some rough days with the treatment centre he attends part time. It's culminated in his refusal inability to attend. I won't go into detail because that's his story to tell should he wish to some day - but I will say yet again that my dream for this world is that people could, in the face of what seems like acting out behaviour or noncompliance, act with compassion and guidance rather than threats and power struggles. Going into a meeting with the centre tomorrow, I'm not at all sure what the future holds - but I do feel peace and conviction in what I know my son does and doesn't need. My son is good enough just the way he is, thank you very much. That will guide me, no matter how bumpy and unpredictable the path.

Over at Hopeful Parents

Time flies yet again. It's the 27th and I have a post over at Hopeful Parents. I almost didn't post as I am playing catch up from being away and trying to meet some contract work deadline. I hope you will pop over and read my latest post Not Ever Good Enough at Hopeful Parents.

Vulnerability

A few short weeks ago, a close friend, a mentor - one of my fellow moms whom I have learned from and leaned on heavily over the course of 8 years called and invited me to a retreat. I am a cautious person, I enter novel situations and environment cautiously and with much anxiety. When she said "please come" I did not hesitate. If she thinks I should go I go.

And so grateful and joyous am I that I went.

A. held down the fort, support workers stepped up to the plate and I pulled myself together and headed an hour away (yay - usually everything is at least 2 hours away). It was exhausting, it was invigorating. Our facilitator referred to opening up to new experiences and thinking as "stretching". Oh my I did a lot of stretching. I ate food I had never had (here is a confession - until this past weekend I had never had salmon or risotto, I had and loved both), I spent probably the most time I ever have in the presence of many people who share so many of the same visions and dreams I do, I asked people questions and learned about their lives. I shared openly and I hugged strangers who quickly were no longer strangers. I experienced love and acceptance on a whole new level. I danced to drums with abandon and then played the drums in a drumming circle. I was filled to the brim with hope, possibilities, shared stories, laughter and vulnerability.

We stayed in a striking hotel with amazing suites with a penchant for detail. The beds were luxurious. But we hardly spent any time in our rooms - every moment was packed with togetherness but much of that was spent in silent contemplation. I meditated for the first time ever and found that I really enjoyed it and for the first time in my life one of my horrific migraines resolved without the use of medication.

I met some of my hero's in the world of inclusion - not education inclusion political speak to appease people. REAL inclusion. People who listen, learn and help people live their dreams. To build lives free from the restrictions that have been placed on vulnerable people because of misperceptions and preconceived ideas. The best is that I did not just meet these people - I ate and laughed with them. We shared drink and our stories. We drummed and danced side by side and their energy filled me up.

I know I have so much to say but I need to process it without losing it and letting my everyday life pull it away from me.

One of the things we did at the retreat was watch this video. It is funny and inspiring and powerful. Take some time to watch it, you won't regret it.
Brene Brown: The power of vulnerability | Video on TED.com

I am exhausted and exhilarated all at the same time.

Trust

I get to the residence to pick him up. He's just had 6 hours of Respite at our local adolescent treatment centre. The residence he "hangs" at has about 6 teenage boys, some who are living there permanently. I'm hopeful that today went better than previous Saturdays. He attends the same program during the week but our attempts at weekend overnight Respite hit some bumps so we dialed back and are working on his building relationships with the weekend staff. It's all about relationships. When he feels safe and understood he is a different child. People need to experience him repeatedly to really understand him. People have to prove to him that they can be trusted.

When I pull open the door he greets me right away. Not with "hi mom" but rather with "I got a sliver, I need tweezers!" at the top of his lungs. He is moving back and forth, room to room while trying to explain to me what is wrong. I begin to piece it together - he has moved quickly down the stairs, sliding his hand on the banister and getting a sliver in his thumb. I take a quick look - while his whole body bounces and jiggles. I can't see a sliver but I can see a slight abrasion. I assure him we can take care of it at home. He begins telling me the story again, his voice rising. At that moment he sees the staff come around the corner - the man he has built a good relationship with over the past several months. One of the key people who supported him during his transition to this particular program.

"Hey, I need tweezers!" C demands of the staff. I can see he is beginning to spin out of control. I am hoping we can head this off and get him to the van quickly. Before I can respond the staff says, in a matter of fact voice "I told you three times already when you asked - we don't have any. Besides I can't see anything to pull out of your thumb!"

"You're first aid kit will have some. You have to have a first aid kit. Everyone needs to have one" barks C.

The staff shrugs, "sorry bud - don't have any" and walks away to help one of the other boys with something.

This is the part of the story that I SHOULD have done things differently. If I could this is what I would have done:  I would have said to C, in front of the staff "Wow, C, that must have hurt when you did that. I bet what you need from Joe (not staffs real name) is for him to know that your hurt and you need his help" and then I would have turned to Joe and said "I know I got here just now, I'm assuming you were just about to help C with his thumb because he was letting you know by asking for tweezers that he needs your sympathy and help".

But what I said was "ok C, lets go and we will take care of it at home". And we did, or at least we tried. It was clear once we got home that he had tried to get it out on his own and while I couldn't actually see a sliver he did have a faint line running down his thumb. 2 days later his thumb, despite my first aid attempts, was severely infected. And my son was refusing to return to the centre.

The amazing part was that he was actually able to say "I'm not going there because they didn't help me with my thumb so I can't trust them".

Amazing again was the Managers response when I called to share with her "Oh, we are sooo sorry that happened to him and that we didn't respond better. He needed our help and we let him down. I will talk to the staff".  In her follow up call she said to me "I'm assuming this incident really set off some attachment issues for him. I'm hoping we can meet soon to talk more about how we can support him."

It's all a work in progress, for all of us. We all are trying to get better at letting others know our needs and building trust, not just C. But we are all making progress and I couldn't ask for much more than that.

When You Wish Looks Could Kill (or at least do serious harm)

I was reading Kari's post this morning and it made me remember an incident years ago with C. I thought I had blogged it because I remembered typing it out. Turns out it was years before I started blogging but I thought I would post it today. This was back when the only official diagnosis we had was ADHD and we were about to get the Tourette's diagnosis.

September 24, 2004

I am a mother now. After much soul searching, treatments, agony, despair and hope I became a mother. And as my son learns and grows, so do I. Nothing could have prepared me for motherhood, nothing could have prepared me for this wonderful energy force to take me on the most amazing ride of my life. It’s exhilarating, it’s exhausting, and it’s beyond mere words.

Yesterday a boy at C’s school called him crazy. Worse than just hearing about it I witnessed it. As C comes around the corner to join the boys at the monkey bars, the brother of one of his classmate’s yells, “watch out guys, here comes the crazy kid”. Of course he didn’t notice me about 30 feet away but his buddy next to him did. As I approached I yelled “Hey, why would you say that to him?” In a way I have to give this kid credit (or is it lack of upbringing?) as he stood his ground and looked at me and said, “then why does he do those things?”. 

How I wish I had the perfect pat answer all ready for this kid. I waited a moment (giving the kid the evil eye) and said, “because he can’t help it, his brain and his body don’t always work together. But that doesn’t make him crazy; it just means he sometimes needs extra help. Why don’t you try to help him out instead of picking on him?” In some after school special that kid would have apologized and become my son’s staunchest supporter. Instead, he shrugged and walked away. I bumped into his mother a few moments later and shared the story, and she did much the same. I guess I know now where her kid gets it.

Competence and Camaraderie

I am going back and trying to finish up posts I started several months ago and hit "publish" on as many of them as I can. I'm trying to change my ways of never finishing things. This post was originally started in October 2010. 

Last year with C's difficulties he gradually removed himself from all activities including his beloved Cub Scouts. We had held him back an extra year at Cubs when other boys his age moved up to Scouts because for several reasons - mainly because Scouts comes with huge independence and increased expectations. They begin to treat the Scouts as young men rather than boys and C was just not ready. We wanted him to experience increasing success - such as camping overnight which he had not yet done. Unfortunately the year passed and despite our attempts, C was never quite stable enough to return.

This year he has a new worker, who happened to move to our town this year and she has worked at his Therapeutic Summer camp for the past 3 summer's. I know - it was an unbelievable fortune, one that we have grabbed onto with all possible enthusiasm. She loves the outdoors and was enthusiastic about accompanying him to the weekly meetings and extra outings where possible. So far this year they have enjoyed a trip to the police station, a farm and to a wood shop to cut out their Scout Trucks for racing. There have been other organized trips that C has decided ahead of time that he would prefer not to attend (like a hike in the freezing rain and mud that was a "go" no matter how long or hard it rained because Scouts need to "be prepared") and at this point we support him when he decides to forgo an outing.

He's earned a few badges so far and looks forward to his time with the pack. I just cannot say enough about the dedication and investment of the leaders. I went on one daytime outing (everyone else was camping - we joined them for the day), and I was taken aback by the spirited personalities of almost every boy in the group. The leaders are working with kids with limited social skills, limited interests, difficulty in executive functioning and so on. They are doing it without any extra assistance or information. They have taken these boys under their wings and I was humbled by what I witnessed and experienced the day I spent with them.

I know my son has grown so much from being in Scouting. Every adventure adds to his feeling of competence and camaraderie and that is what every boy should experience.

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To Tell or Not to Tell, That is the Question

Over the years I have given a lot of my time and brain power (as diminished as it might be on many occasions) to this question:

When faced with a situation in the community where my child has been struggling or done something to bring attention to himself - do I TELL that person or persons about his complex needs?

Which then inevitably lead to more questions:

If yes, then how much or how little do I say?

Do I give the correct DSM label? or just give layman's terms and references?

Am I violating my child's right to privacy by telling?

Will the person honour what I have told them or use it in some way against my child and/or me?

WHY should I even care what other people think about my child?

Am I wanting to tell them to alleviate my own feelings about this event (embarrassment, anger, frustration) or am I truly doing it to assist my child in some way?

Even if I am doing it because the person has pissed me off and I want to wipe that know it all smirk off their face then isn't that ok sometimes? Aren't I entitled to be less than perfect?

And on and on and on.

You get the picture.

There have been many times I have shared with individuals and groups (some more successful than others) and times where I have chosen to remain somewhat silent. In the end there is no clear cut rule or answer, at least not for my family. There are times where explaining to other people will undoubtedly help my son and/or our family. There are times where it is clear that all the explanations in the world will not change the other persons or groups assumptions about my son.

The biggest thing that I have mulled over the years is this: In so many ways we should not have to divulge private information about our son or our family just to gain understanding, compassion and acceptance from the community. In an ideal world people would not be quick to judge and condemn. People wouldn't assume that a child "acting out" is the same as a child "being bad" or that the parents are doing a bad job. In an ideal world we would all be happy to accept and acknowledge that everyone is doing the best they can do. That people would be willing to cut fellow parents some slack and to not condemn each other.

The world is not ideal.

However, I must say that, in almost EVERY instance where we have chosen to share some of our son's story we have made a difference. A difference to him, to our family, to the individual or group that we shared with and many times we have either witnessed or been told about how this new understanding of our son and one or more of his disorders has now lead to increased understanding/awareness in our community beyond our son. It is like its own "pay it forward" scenario.

I often tell service providers involved with our son that I hold near and dear to my heart the philosophy that compassion is key and knowledge is power. Building awareness leads to increased understanding and, in some instances, to change for the better for more than just my son. It sometimes means making us somewhat vulnerable and it means choosing to believe that there is inherent good in humankind. I am always asking people involved with my son to extend to him the courtesy of understanding that he is doing the best he can. What kind of hypocrite would I be if I didn't follow that same practice?

I choose to believe that people are doing the best that they can and if I take the time to share and explain that they will then use that information, even in the smallest of ways, to do even better the next time.

Squeezy Hugs

He climbs up the snow bank and down, crashing into me. He steadies himself and then glances, ever so briefly at me, before he throws himself into the snow. He's forgotten how big he is, how much he has grown. His body is moving faster than his brain and he finds himself crashing half into the snow bank and half onto the hard cement. I hear the loud thud as he lands, his chest bouncing off the pavement. I wince, he barely registers the pain on his face before he is up again. When he was younger I would have found a way to intervene - to put myself in his physical space. To give him a big bear hug (a "squeezy hug" he calls them). But he's much bigger now, it won't be long before he is taller than I am. He's too frantic right now for me to move closer. If I try to get in his space right now, too soon, he will panic and bolt.

I concentrate on remembering to breath and I constantly self talk in my brain "He is fine, you are fine, this too shall pass". I momentarily let myself feel frustration. Not with him but with the fact that had I been with him even twenty minutes earlier I would have seen the signs that his Engine was running high and his brakes were leakier than ever. I would have  moved him to an uncrowded, quiet area. Given him a cold drink, encouraged him to do some heavy work (like wall push ups or carrying a stack of books) and averted this complete dysregulation (though I admit I'm not 100% effective). But I wasn't with him. I couldn't do that. So I push those thoughts away. I need to be fully present in this moment with him. I need to be alert but calm. Ready to step in as soon as I see a chance to help him regulate. 

He starts to dart one way then seems to change his mind but his body hasn't fully received the message -  his legs go in one direction while his upper torso tries to head in another.  This results in him falling again, this time all of him hits the pavement hard. This time the pain seems to register but he still jumps up right away, gasping for breath, his face mottled red and white from the exertion.

"I think that one hurt" he yells as he holds his side. He's not yelling at me, he's become so dysregulated he cannot control the volume of his voice.

 But now I see my chance to step in, to assist in some way. I swiftly but calmly move closer as I say "Ouch, that must have hurt. Let me see". I look at his side, a definite redness is developing, I rub the spot gently and then pull him in for a hug. I know i am taking a chance, he might be too hot and too "touchy" for me to try to hug. The tightness in my chest lessens for a moment as he relaxes slightly in my arms and says "Big Squeezy Mom" as though he is 4 instead of 12.  I position myself, my arms wrapped around his upper torso - I try not to think how hard it is getting to give him the squeezy hugs he needs as he keeps getting bigger and bigger. I entwine my hands and squeeze my arms around him, picking him up off the ground slightly. I'm just about to ask him if he wants more when something catches his eye.

Before we can finish this, this much needed regulating, he has broken free of my arms and is running toward our neighbour. His whole body seems disjointed - his arms flailing and he almost trips over his own feet.

"HEY!!!" my son yells to our unsuspecting neighbour. The man startles, almost drops the shovel he holds in his hands. Then he sees its my son and his face relaxes. Almost as quickly an alarmed look returns to his face as my son barrels toward him with no indication that he is going to stop before crashing into him.

I start to panic, wondering if my son really will inadvertently knock over our elderly neighbour. I know I am too far away to physically stop him and yelling "stop" or "no" might dysregulate him further.  Instead I yell (as calmly as I can) "C, freeze!".  Thankfully this old technique that we have not had to use for many years seems to flip the switch in C's brain and he does indeed come to a full stop, about 6 inches from our neighbours face. Before I have time to reach them or the neighbour has time to recover, C has moved on to the next thing.

"I seeeeeeeeeeee youuuuuuuuuuuuu arrrrrrrrrrrrrrrre shovelling" he struggles to get out, his vocal tic makes him elongate almost every word and in an effort to get the words out he moves his voice up several octaves. The sound, quite honestly, sounds like nails running along a blackboard. Bless this neighbour of ours. He looks at C and flashes a smile and answers "Sure am".

My son begins to insist that he help him, that our neighbour let him do the last bit. I'm honestly taken aback by C's offer, it is a very polite and neighbourly thing to do. But the neighbour quickly brushes off his offer as he only has a few more shovels to go and he is done. C, however, is not going to take no for an answer and I can see him digging his heels in. The continue their banter of offer and refusal back and forth. C's voice is becoming more and more insistent, pressured and loud. He is unrelenting. I grasp at ideas to interject  meant to spur C on to coming home with me. He's having none of it. I see my efforts are only spurring on his intense feelings. He's now physically trying to grab hold of the shovel. The neighbour is backing up, not giving in and yet beginning to falter as this seemingly polite boy is coming close to crossing the line to rudeness.

I start to feel panic welling in me. My head is pounding - the small headache I had before heading to pick my son up from his short day at school has now blossomed into eye watering pain searing between my temples, making my eyes blurry. I am worried for a moment that I might actually get sick, right there standing on the sidewalk in front of our neighbour (who we rarely have ever seen in our 10 years living here so we are virtual strangers). I am searching my brain, trying desperately to come up with something that will motivate C to abandon his quest to be "a good neighbour" as he keeps repeating to an increasingly distraught man.

Out of the corner of my eye I see snow, large icy chunks strewn across the sidewalk in front of our house. I immediately want to scream. Once again the new snowplow company has succeeded in plowing our already plowed road and covering the newly cleared sidewalk. I want to scream. I so don't need this right now. I want to sit down on the sidewalk and sob - for the pain in my head, for the pain in my heart, for the frustration and the panic, for the feeling that we just seem to keep doing the same dance over and over.

But I don't do those things

Instead I take deep breaths and I proclaim "C - look at all Dad's hard work! Look at what the snow plow did"

It works. He looks at the direction I am pointing and he abruptly ends the discussion with the neighbour and starts stomping off down the road. I flash what I hope is a sincere smile at the neighbour and wish him a good day.

We get to our house. I look at my watch. It has taken us 20 minutes to get home from school. The school is 3 houses away. I just want to go in the house and crawl under the blankets. But instead I instruct C to grab a shovel. We need to get the ice, snow and slush off the sidewalk at our house and our neighbours before it freezes up and becomes impassible for our elderly neighbours and the kids walking to school. I'm also hopeful that the heavy work will help him regulate.

Of course our garage door is broken so I have to dig out my keys, head around the side and get another shovel for myself. By the time I get back C has thrown a ton of snow on the formerly clear road. Snow that the new plow driver will just speed along and throw back across the sidewalk.

I don't think this time. I just react. I start to yell. C's face falls - I hadn't realized how proud he was of his hard work. I feel instantly guilty but before I can apologize  he begins to bang his head off the tree. Hard. He knows I am tense and upset. I have just yelled at him. He assumes it is all his fault. I move towards him and put my arm around his shoulder. I pull him close and I say "I'm sorry" and he accepts my apology.

He goes back to shovelling and the fixation and line of questioning from the past few days resurfaces.

"Mom, I need to go to the Dollar Store"  "I need you to take me"  "If you don't take me I'm just going to go on the bus" there are no pauses for me to answer. He makes no eye contact. His speech is pressured and brief. Finally he yells "MOM, I NEED to go".  He is visibly shaking now and he's right beside me. I look up and, even as part of my brain yells "NOOOOOOOOOO" I answer him.

I say "We are not going today"

And he throws his shovel. He swears and approaches me, pursing his lips and preparing to spit. At the last second he turns and runs into the garage door instead. He slams his body hard and he yells "I NEED to GO!!!!"

I know this is the OCD. I know he's been fixated on the Dollar Store and a certain toy for a few days. I know he truly believes that if he does not go he will not be able to live - that the anxiety and unrest will continue to haunt him. The unrelenting thoughts haunt his every moment. He cannot find joy in his life when he feels so out of control.  He talks all day about it, he even talks in his sleep. His anxiety is high and his tolerance low. I know he believes if he goes and gets this toy he will feel better. I know this is not true. I know because we fell for it the first day. And for a short while he felt better. But we are wiser now. We know.

I know this is not his choice. He needs me right now. I just need to get in the house. I need my migraine medication. I need some space and a good cry. But he needs me. He needs me to be calm but I can't be calm right now. I feel desperate and hopeless. I feel angry and frustrated. Through gritted teeth I say "Get in the house!", well really it is more of a growl as I stomp my foot and point to the house. He freezes, there is fear in his eyes that I don't notice at first. I'm too busy trying not to let these strong emotions of despair and anger and frustration completely overwhelm me. I make a move toward him and he jumps forward and runs into the house. I start to cry - relief that he is now in the house, shame that I have acted this way.

When I get in the front door he stands a few feet away, biting his fingers and swaying slightly side to side. He looks at my face and seems to take in the fact that I am crying. He starts to talk, pauses, smacks himself in the head once and then says "I'm sorry. I'm sorry but Iiiiiiiiiiiiii neeeeeeeeeeeeed to gooo to the ssssssssssssttttttttttttooooooorrrrrre". I feel like someone has punched me. I am crying and he is still asking to go to the store. But before I yell back I catch his eyes. The pain and fear and anguish and guilt - all of it is there in his face. I've stopped crying but now I am partly hunched over - my eyes closed, taking deep breaths. Suddenly I feel calmer and I look up at him and I say

"No. I'm sorry. I'm sorry that school is so hard. That the world is so noisy for you. That your brain tells you one thing and your body another. I'm sorry that OCD is trying to trick you and all of us. I'm mad at the OCD but I forgot and I got mad at you. I'm sorry I blamed you. I'm not mad at you."

He begins to cry, his shoulders releasing some of the tension and he just nods at me.

I sit down on the bench by the door.

He says quietly "Do you need a hug?"

I nod and stand up and he comes and squeezes me tight. I kiss his head as we hug and say "Remember - It's not you I'm mad at. It's the OCD". I feel him nodding his head and he pulls away slightly and says

"and the damn snow plow guy"

Yes. Yes. And the damn snow plow guy.

Still Here

I'm still here - just trying to juggle some contract work for an upcoming event, the boys and my household. I'm also trying to juggle it without letting myself get too stressed about it. Two migraines in the last 3 days would tell me that I'm probably not "rolling" with it quite as much as I'd like to think I am.

In the meantime - I wanted to link to this amazing post that Kari has done at Coffee Catharsis about Responding to the Need Not the Behaviour. I am always preaching this but she has summarized it and given an example in a way that I've not yet accomplished.

Small Update & The Best Secret Ever

C has been working so hard - at school, home, Scouts and the treatment centre he attends most afternoons. He's actually finishing projects he has started (with lots of support) and he has a Science Fair Project due this Friday (I'll post more on that soon). A few weeks ago we increased his time at school and he's now up to 2 hours. He's doing really well while he's there but we do experience the fallout at home afterward.

Every Spring for the past 8 years C has grown very despondent and his OCD symptoms have come on full force. This year he's on different meds and has an amazing amount of support so while we are seeing an increase in the OCD, its not nearly as debilitating and the depression has been kept at bay (knock on wood).  He's doing well but it does come at a cost to all of us - including him.

So we are trying to be proactive this year and had anticipated the Spring is hard and we planned for him to attend a Respite weekend where he attends Summer Camp. For C, Camp Winston is like Christmas and we know he will love his time there. We are hoping it is just the boost he needs. He doesn't know yet that he's going - this is the hardest secret to keep!! But we need to get through the week and his Science Fair project is due this Friday - he's worked SO hard on this and we don't want him distracted from it.

When will he know he's going? Well, on Friday I will pick the boys up really early from school and tell them we are going to visit their Great Grandma (which we will as it will make a great timing for a movement break and we haven't seen her in forever). Then we will get back in the van and halfway there (camp is about a 6 hour drive from where we live) A will call C from work. I just hope C's excitement can be contained for the remainder of the trip.

Confession

In 2000 my darling husband and I started seriously thinking and working toward adoption to start our family. At the time I worked in an Assessment/Day Treatment program for preschoolers with social/emotional/behavioural issues. I would go into work and sit in clinical meetings and while the people I worked with were amazing and dedicated and knowledgeable and deeply dedicated to helping children and their families - they also seemed resigned to the idea that our very young kids were often destined to a lifetime of misery no matter what we did for them in early intervention. Many of our kids were in foster care (or on the brink of going into care) and my colleagues often proclaimed they were damaged and "unadoptable". I couldn't reconcile this. To dedicate your life to these children, to witness the delight my colleagues took in the escapades of our young charges only to turn around and declare such doom and gloom for the future of the very young.

When my Manager heard that we were taking the adoption classes in 2001 she congratulated me and wished me well but seemed guarded. When I told her we were looking to adopt a slightly older child (3 to 5 was our preferred age range but we would have looked at older) she tried gently to talk me out of it but stopped short of being offensive.

She did however give me a copy of "Adopting the Hurt Child" by Keck and Kupecky

The current title includes the words Hope for Families with Special-Needs Kids but I don't remember those words being there originally, if it had I think I would have been thankful rather than put off by the gesture. Because to me I was surrounded by people that seemed to think I had lost my mind. I have said it before and I will say it again

We did not go into adoption thinking it would be easy, not by a long shot

But these people, my co-workers, they had seen a lot of really hard and serious stuff in their many years experience. I was young and eager and not as experienced. I wouldn't say I was naive but I think my co-workers just wanted to protect me from the very hard road they knew we would be travelling.

So the title of my post is "Confession" and this is where I divulge it:

I adopted a child at the age of 3.5 who we now understand had severe attachment issues but we forged it ALONE without therapy or guidance on what to do. I purposely avoided reading books and blogs and websites about attachment even though I KNEW good/secure attachment is the foundation for everything else in life. 

Let me explain 

During the Adoption disclosure process C had a Psychological Evaluation. At the feedback I specifically asked about his attachment and we were told that it was obvious he had been fortunate to form some attachments in his young life. After that - I tucked away the attachment piece and rarely looked at it.

I mean - I knew at a deep level the attachment issues would colour his world. How could they not? He had multiple disruptions and had experienced significant neglect (the extent of which we would not understand until much later).

But no one in our community mental health systems seemed to know anything about it - the one social worker actually said to me, even though I informed her SEVERAL times that he was three and a half when we first met him and had serious and significant disturbances in his attachment - she said "oh but surely he doesn't remember any of that"

that was in 2004 and I kid you not people

I knew she was wrong and ill informed but I got tired of trying to find someone who would understand and help us.


Over the years the topic of his attachment has been brought up and waved around but never really addressed. We forged ahead on our own. We focused on his Tourette's, his ADHD, his learning issues, his anxiety and his OCD, his Asperger's and his BiPolar but no where along the way did we really look at his attachment.

I wanted to but I only wanted to with experienced and knowledgeable people.

I had read many books and websites and blogs that scared the crap out of me. People being told to hurt, shame and/or punish their children for things that I knew in my core were not the child's fault. Tactics that were not well researched or proven were being touted as "cures".

And overall people were not optimistic about our traumatized children. All I knew was that I could not, would not purposely contribute to further traumatizing of my child.

I had not heard of therapeutic parenting

I eventually found Collaborative Problem Solving and

I went to some adoption conferences and training

We did the best we could at home

and boy was it hard

But that's my confession

And if I could give just ONE piece of advice (which I don't tend to give and only if asked) to adoptive parents who are just starting out it would be to find someone who is trained and extremely knowledgeable about attachment and adoption issues. Make sure that therapist is a good fit for your family because there are times where you will rely heavily on them.

I look at C, especially the past few weeks, particularly after I finished the Circle of Security attachment group and I am amazed at his progress. I am amazed by mine. I am also amazed by my husband's progress - he was unable to travel to CPRI with me to take the group but he has listened as I do my best to describe things. He's putting them to work and he's even reminding me at times when I forget.

I try not to feel too sad that we didn't have this earlier. I try not to feel bitter that for so long I was just flying by the seat of my pants. And now that its not all as scary and horrible as it used to seem I am reading about attachment (books and blogs) and I'm reaching out to others.

It's nice to not feel alone anymore.

Reminder to Myself

Things for C are going well (and yes, I know I just tempted fate by blogging that but oh well). He has his ups and downs and every day is a challenge - and yet, he's managing everything and compared to how things have been in the past things are good.For me I gauge that he's having good days partially by if I think he is happy and partially by if I am receiving phone calls from school and the treatment centre about concerns or not. I have not been getting any calls lately and overall C seems happy.

What does that mean for me though? Does this mean that because I can tell people he is doing well that the same goes for me - that we are so entwined that his "good" day dictates that I have a good day? Cause let me tell you - his "good days" that I am SOOOO thankful for come at a HUGE cost to me. The patience and calm that must absolutely ooze out of every pour of my body in order to help him stay regulated. The work calls and tasks (yes I'm trying to do some contract work that allows me to mostly work from home) that I have to just drop, sometimes literally mid-call, to tend to his increasingly overwhelmed system.

We increased C's time at his community school this week. I had held everyone off, including C, as long as I could. I knew in my gut he was as ready as he was going to be - and yet, I've been down this road before. Even good and happy and successful experiences can wreak havoc on C. I knew that the more time he spends at school, the more he will use up all of his reserves trying to act right and control himself. Then he will come home and be dysregulated. Funny though - even though you KNOW it's going to happen there is no way to prepare fully.

So I'm doing my best to keep calm and to stay focused on what is important. It's important to be there for my son and to help him to regulate. And I do see that it is taking less from me to help him do that. I am mindful that he has made huge progress.

What I don't need are so called "professionals" who know absolutely nothing about attachment or therapeutic parenting or really anything about how to "handle" kids with anything other than threats and punishment - I don't need those people making insinuations and assumptions about my parenting. Even more so I need to remind myself that I don't care what they think - I know I am doing right by my son. I will pray that one day they will understand what we are trying to do. I will pray that they will reign in their harmful practices. I will pray that when they do one day realize how different their approach could have been that they will be able to forgive themselves because just as sure as I am that they are doing incredible harm I also know that their hearts are in the right place and they really believe they are doing good.

My "friend"

I was reading Marty's Musings over at Waldenbunch and she had posted about her "friend" financial worry that holds her back.

My friend is free floating anxiety. I've lived with it my whole life. Waking up in the morning and being hit by this horrible, gut wrenching feeling of dread and despair.

But when I take a moment to take stock of my life I quickly realize - everything is ok. I'm ok. There really isn't anything looming (usually). The interesting thing is that when there IS something to be stressed and worried about - that is when I feel really calm and just move into action mode.

So far this morning I have yelled and screamed at every member of my family. Apparently I seem to be really mad about something or at someone. But when I took a moment to reflect I realized - I'm just back to feeling anxious and worried. Much like our kids who have experienced trauma - something has triggered in me and I'm lashing out and driving people away.

But now that I have recognized and labelled my own miscuing - maybe I can sort this out sooner rather than later. Or at least one can dream. I too have a feeling that, as Marty wrote -

This "friend" and I will probably do battle for a lifetime.

What is your "friend"?