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.