Now We Are Six

Oh how my heart aches and bursts with pride today. My baby boy is turning 6 years old. While I am happy to see the tail end of 2009, I am weepy about my little one being one year older. It seems like only yesterday that this was the face that greeted us on our first visit to the foster home to welcome him into our forever family:



And now, Sweet J, you have grown beyond my hopes and dreams. You are a sweet, sensitive, boisterous and spirited little man. Your body and your mind are constantly on the go. You ask the most thought provoking questions and you charm everyone you meet. I am so proud to be your mom.

If I could make a wish for you as you blow out the candles on your cake - it would be this: Never lose your ability to question, embrace your empathy and sensitivity but also remember the worlds troubles do not belong all on your shoulders. It's okay to be silly and carefree at times - life will be serious enough when you are grown.

And from my one of my favourite books as a child, Now We Are Six by A.A. Milne

When I was one,
I had just begun.
When I was two,
I was nearly new.
When I was three,
I was hardly me.
When I was four,
I was not much more.
When I was five,
I was just alive.
But now I am six,
I'm as clever as clever.
So I think I'll be six
now and forever.

As your mom, I'm okay if you want to be six now and forever! But know even when you are "really big" at ages 26, 36, 46 and on an on there is always room in my arms for you.

Happy sixth birthday, light of my life!

Love, Mom

Our Christmas in Pictures

From our family to yours a very Merry Christmas!

The Long Hard Road

Some months ago I was reconnecting with a high school friend on facebook, we were catching up on where our lives had taken us and how far it was from who we were in high school. When I described how I had felt back then (out of place, overwhelmingly shy and hopeless and unsure - but weren't we all?) he told me he found that hard to believe. That I always seemed so sure of myself, so intelligent, so "together". He commented that guys had been intimidated by me. Hunh. . .really . . . wow. I honestly had no idea. And it really got me to thinking about who I feel I am on the inside and how people view me on the outside.

I have always been able to write from the heart but put me face to face with someone and I have no idea how to express in words how I am thinking and feeling. I often relay deeply painful information in a matter of fact, even nonchalant manner. I don't mean to - it just comes out that way.

Sometimes when I think back to who I was, as a mom and advocate, in 2004 I cringe. Don't get me wrong, I am proud of the the fight I put up - the stamina that I showed in trying to get people to listen and to help us to help our son. But I cringe inside, remembering how raw it all was. How voracious I must have been. I did not have much practice speaking up for myself let alone for others - but here was my son, who needed a champion. If I didn't do it then who would? So like many other moms I got on my battle gear and prepared to fight to the death.

I was lucky, I guess, that I am not a warrior at heart. I prefer peaceful solutions and am actually a good mediator. There were times where I felt backed into a corner, where I felt scared for my son and for his future, where i felt hopeless and helpless and that is when I fought. When I dealt with the mental health agency in our town that provides service to children from 6 years to 19 years old and the first social worker we saw told me repeatedly they had nothing to offer us. When my son in the first grade was being suspended and every day after school was like a battle just to walk home - 3 doors down, she told me that we weren't in enough crisis. I fought her then, getting her to keep our file open, hoping somehow someone would know how to help us.

When our son began to do movements over and over for no known reason and then began with vocal tics so strong that he couldn't get words out of his throat and he would look pleadingly with his eyes wide begging me to help him - I yelled loud then and demanded to see someone, anyone to help us. The Social worker listened then and we saw a Psychiatrist and she diagnosed Tourette's syndrome and I felt relieved and sad all at once. THEN the social worker discharged us - no intervention, no assistance, just the diagnosis and a pat on the back and we were on our way.

From there things continued to snowball. My son constantly begged me to come close then pushed me away. He continued to struggle at school and get labelled as a "behaviour problem". He got kicked out of every after school activity and childcare that we tried. I told people, "this is NOT just Tourette's, this is something else". I banged on doors and hounded everyone I could think of. I cried and begged people I had known for years, having worked in early intervention since graduating university.I felt dizzy from trying to navigate the "system". We were stuck in a void. He didn't qualify for developmental services and he wasn't "bad" enough to qualify for the paltry mental health services available in our community.

I began to feel dizzy and sick to my stomach every time my cell phone rang. The only time it rang was if it was the school. And they called a lot. I felt like a horrible failure as a mother. I kept my head bent low when I went to pick up my son from school and willed for no one to say "Oh, Mrs. S . . . do you have a minute?". that was code for . . . "your kid has done something (or lots of things)and we want to torture you with every last horrific detail".

But over time, I learned how to hold my head high. We got more and more answers. We had more people on our team instead of it being "us" versus "them". We qualified for mental health respite dollars and years later for Special services at home. He began to stay in school more and the calls from school came with less frequency and less intensity. We had a new social worker assigned to our family and though I battled hard against him and all I thought he stood for,he stood by us, by me. He listened to my rants and ravings. He got to know my son, the hard way, through years of living and fighting in the trenches with me.

So I look back on those years these past couple days and I do wonder could I have fought differently and still have achieved the same results? Could I have held a little of myself back and still done it all? I am so thankful for what we have managed to get and to do but I am a little sheepish about some of the raging that occurred on my part. I didn't know it then but I was battling against myself just as much as I was against anyone else. I was battling against the irrationality of my son's complex neurological makeup and the uncertainty. Not to mention the fear that I felt and the grief. Yes, I admit it finally, I was grieving. I couldn't see it then. I couldn't admit to it because it felt like a betrayal to my son if I did. That I was saying I couldn't accept him for who he was. But I really did think that if we "tackled" all of C's "issues" early enough and hard enough that we could alleviate a lot of it. I wasn't in a place to accept or even to see that this was going to be a long hard road. I believed in my son and I wanted to accept who he was but I also knew he needed to be able to live in this world of ours. I knew it was going to be hard. I wanted to make it better and easier for him. Perhaps, along the way though, I could have made it easier for myself as well.

He has a Dream

I have written before about my sweet sensitive J who, if I do say so myself, is wise beyond his years. He struggles with the way a few children in his class act and, in turn, how they are "managed" by the teacher. Recently I picked him up at school and he was a little quieter than usual. He had responded "fine" when asked how school was so I didn't push him, I just waited and as usual as soon as we were in the van driving to our appointment he starts his confession. He told me how he has begun to feel angry toward a particular boy in his class who is in his group. In the group they have an opportunity to earn popsicle sticks. The team with the most sticks at the end of the week gets a prize (my back was up about that one - but I have some pretty strong feelings about rewards for some being a slap in the face to others - but this wasn't about me so I tried to remain neutral).

"oh really?" I said "I didn't know your teacher did that"

"yeah" says J, followed by a big sigh "and with John on my team we will never win."
(not his real name of course)

"Why do you say that?" I ask as I fleetingly look at him in the rearview mirror and I can see my little boys lip quivering and eyes moist as he tries hard to manage his tears and his disapointment.

"well, remember how we talked before about John and how he's kind of like C and how maybe his brain works a little different and he ends up doing stuff and getting into trouble?" He pauses, waiting for me to confirm that I remember this so I nod and say "oh yeah, I remember"

"well, so he does stuff and the teacher takes away our popsicle sticks and then I start to feel angry at John". At that moment I'm torn in several directions - I'm frustrated that such a "reward" system has been set up - it seems so punitive and setting this child up for failure - which pulls his team with him - which then leads to hard feelings amoung a group of otherwise very caring and kind kids. It flies in the face of inclusion. And I am sad for my boy who seems so torn about wanting to win but feeling bad for the child he is pitted against. I'm just about to launch into a reminder about how John must feel about the situation and blah blah blah and before I can say anything . . .

"Mom" a little voice piped from the back of the van "then I realize (yes people my 5 year old says words like "realize") that it's not his fault and so I can't be mad at him." This is followed by a big sigh and a sniffle and then a quiet, contemplative, almost wistful tone overcomes him

"mom, i have a dream. My dream would be that everyone in my class . . . well, that we could all work together, like a team, to be the best. That way on Fridays we could all get the prize and NO one would get left out".

Seriously people does it get any better than this little person? And you know what I did? I pulled the van over, opened the back door and gave the boy with the shocked and uncertain look on his face the biggest hug ever. I held his precious little face in my hands and looked in his sad but hopeful little eyes and I told him "THAT is the BEST dream ever!"

Bonding

As with many older adopted children, C has had, well, issues, with bonding with his father, A. In the first few weeks of visits and the early placement in our home C seemed to be ok with A. He would let him pick him up and rough house a little but seemed reluctant to get too close. We figured, ah let him get used to us - he'll come around.

Now throw in there some sensory issues and we quickly came to see that for the most part C was not a cuddly kid. He disliked anyone trying to hold his hand but we sometimes would insist. He would initiate some closeness with me but definitely not A. In fact, after a month or so anytime A would touch him C would hurl himself to the floor and yell "You're hurting me". Makes for a difficult and tense relationship.

Over the years some progress has been made and I often catch C watching his father and younger brother rough housing - at times he will try to join but it often does not end well. He just can't tolerate the hands on and he usually ends up in tears or angrily trying to punch someone.

More than just the physical contact though - C and A struggled to really connect. I just intuitively get C somehow, A not so much. It makes for some tense moments in our house when C will only come to me for comfort or assistance and his father is saying to him "I'm RIGHT here - I can help you". It's a complicated web of family functioning (or dysfunction??).

A few months ago C discovered Geocaching while on a Scouting outing. It's the perfect meld of his passions - maps and treasure. Guess who else is a BIG fan of maps/geography - you guessed it A! So to my delight my dear husband and son could be found eagerly searching online, researching which GPS unit to purchase, signing up on Geocaching websites. For C's birthday A gave him a GPS - he was in HEAVEN. This past weekend C was highly agitated and A took him out for several hours to geocache. C came back excited but much calmer - an amazing transformation had taken place. As C told me of his adventures he leaned into his Dad who was sitting on a bench at our entryway. He slung his arm around his Dad's shoulders and leaned against him. When he finished telling about their adventure he turned and hugged his father and thanked him for taking him out. I had tears in my eyes and a huge smile on my face. After C walked away A told me "He took my hand". It seems they were out walking, in search of a cache and C just took his fathers hand.

My wonderful husband waited 8 years for his son to take his hand. Now THAT is a father!

A Last in a Long Line of Lasts

We tend to celebrate "firsts" with our children - first word, first step, first day of school. Yesterday I tried not to tear up as C lost his last baby tooth. My boy is getting way too big. I drove us home from the dentist, him beside me in the front seat (don't even get me started on how weird it is for him to be able to ride "shotgun"), trying not to cry. I don't know if he knew how nostalgic I was feeling - but as we hit the driveway he bounded from the van yelling "hey - let's go write to Santa!". Sniff. Contented sigh. He's still my little boy.


C when he lost his first tooth at age 5

To a Mom

Dear Grade 1 Mom

I know it took a lot of courage to call me and talk to me about your son. I will be honest - I've been wanting to call you or to catch you in the school yard - I've wanted to reach out to you since our boys were in JK together. When we went on the fieldtrip to the horse ranch and your son struggled. I wanted to reach out to you then but I didn't know how. I didn't know where you were in the journey, I didn't know if what I would have said would have felt supportive or if my words would have cut like a knife.

I should have thought back to when C was in JK - how I felt so much like an outsider. His epic meltdowns at school events and the one and only birthday party he got invited to - parents actually moving away from us, recoiling in horror as I lead my boy out of the party room. The feeling of being judged. The absolute shame as a parent and gut wrenching sorrow I felt for my son - so misunderstood. I should have remembered how much it meant to me when one or two parents reached out, however tentatively and awkward, trying to understand and to give support.

So when you called a few weeks ago and began to share, trying to figure out how to allow your son to come to a party he so desperately wanted to attend and yet you were quite sure he could not handle - I eagerly jumped in. I offered "I don't know how much you might know about my older son C and his struggles . . . " I began. I could almost feel your relief through the phone as you began to ask questions and to marvel at the similarities between our two boys. Your relief as I also explained that I work with exceptional kids and their families. That truthfully, your boy won't bring anything to this party that I haven't seen or dealt with before - personally or professionally. When I extended the invitation that wholeheartedly he, and you, and his sister - anyone and everyone that he wants - is welcome in our home at our party. When I suggested that should he need time away from the craziness that would be 17 6 year olds and that he could go on our computer or watch a movie or play in J's room - I think you might have started crying from the relief.

I want you to know that when your son was the first one out in the first game - I SO would NOT have planned it that way but I would have understood if he had melted down and I would have been right there with you, offering any support I could have. When he looked around and announced "That's ok, I'll try harder next time" and happily moved away from the group, I want you to know I did have tears in my eyes - the wonder that is your boy to have come so far so fast. You had every right to be so proud that night. I am so happy we got to be part of his magical night. I am happy for you that you got to witness his success and to witness the kindness of so many of his classmates who intuitively knew what he needed and made sure he was included - even before I could move in!

In case anyone hasn't told you this lately - you are a wonderful mom and he is going to be ok. So much more than OK - He's FABULOUS and so are you!

How Can it Be?

My Sweet Boy - How can it possibly be that you have gone from this




to this



in the blink of an eye? Where is the boy who yelled "Don't go be-bout me" when I was heading out the door? The boy who used to fit easily into my lap, used a booster seat and would sing and talk himself to sleep at night?

You, my sweet 11 year old boy, have changed my world so completely. Being your mom is all at once the hardest and the most fulfilling thing I have ever done. I am so proud of the young man you are becoming - but remember you will always be my little man. Even though you did not grow inside me - I know I was meant to be your mom. I am so blessed to call you my son.

Happy 11th Birthday
Love
Mom

A Home Run Day!

There is lots happening in our household . . . and I feel as though I can see a light at the end of the dark tunnel I have been travelling. This past week A was off work and we spent some quality family time together. Today we surprised the boys with their first ever baseball game. We went across the river to Detroit to watch a Tigers game. It was everything I could have wished for the boys as their introduction to baseball. The outdoor stadium, the junk food (I was aghast when I realized neither of my boys knew what Crackerjacks were!) and all the noise.



On the way over J expressed an intense wish he had - that we would do the wave. He got his wish!



C wanted to catch a fly ball - one came very close but no luck today. He handled the disappointment like a champ (NEVER would have been able to say that a year or two ago).

All in all an awesome day to round out an amazing week for our family.

I think it's obvious from my past few posts that I am not in a very "hopeful" place in my life right now. I am usually a very positive person. My friends laugh because I am always putting a positive spin on things. Being at home with the boys this week, no job to run off to, I am trying very hard to just relax and enjoy the beautiful summer weather and my family.

Laying It All on the Line

Yesterday was my first official day of being a stay at home mom. You know what I did?

At 1:00 I drove down the street to my old work (yes, I left a job last year that was just down the street) and I met with a Social Worker about our youngest. I parked my composure at the door and sat in her office and put it all on the line. My worries for J, what I think he and our family needs, the stress our family has been under. It was better, and at the same time, far worse than I ever thought it would be. There was an element of relief in finally giving voice to my mostly silent worries about J and his struggles. I could tell that she really got what I was trying to say. At one point I said to her, this person who used to be a co-worker but whom I really never knew, "It might not look like it. But I am this close . . ." as I held up two fingers barely apart ". . . to having a nervous breakdown. In fact, I might actually be having one. You need to know that - because I am not always acting like myself". Seriously?? Did I really say that? Sadly - yes I did.

Then I beat a hasty retreat, got in the car and drove to my doctors office. Where, uncharacteristically so, I waited 45 minutes in the waiting room. Tears - from nowhere - streaming down my face. I pulled myself together by the time I got called. As soon as my doctor walked in and I opened my mouth to talk I started to cry - actually, I sobbed. Poor man looked like a deer in headlights. But he sat down on the stool - which he never does - which made me cry harder - and he waited patiently as I tried to paint a picture of what has been happening. I had planned to beg for anxiety meds. He and I have had discussions before about my anxiety and depression - but I always downplayed it and we always agreed that the medications I need for my migraines trumps the antianxiety/antidepressants that cannot be taken in conjunction with the migraine meds. This time I had hoped he would pull some med out of his blackberry that I miraculously could take. In the end, he laid out the options in a very understanding and compassionate way and I walked out with nothing more than a note to be off work and very puffy eyes.

I drove home shaking and exhausted. Relieved in some ways to have the day over . . yet agonizing because in the end . . . although I was exhausted . . . my world was pretty much the same as it was when I left the house hours before.

It's All In the Eyes

My husband told me recently, not in an unkind way, that I truly have a hard time being content. I am either manically happy or desperately unhappy. He would love for me to just be at peace and be content with who I am and where I am and everyone around me. He would like for me to be present in the moment rather than wrapped in worries and thoughts. He is hoping that my time at home will help me to somehow find that peace.

So am I.

I do not disagree with him. I carry around a deep pit of anxiety with me every waking hour. I am more than ready to offer up the anxiety, uncertainty - this feeling of, well, dread that hits me full force every morning when I find myself fully awake. If I knew how to release it, to do an exorcism and rid my life of it once and for all, I would.

My youngest looked at me the other day and said "Mommy . . . what's wrong with your eyes?". I looked at him, curious and unsure "What do you mean?" I said.

He put his hand on my cheek and he said "Your eyes are so sad, even when your mouth is smiling".

We just can't

"Hi, this is Anita at the Y"

"Hi Anita, what's going on with C?"

"Well - he's having a hard time and he put his hands on another kid and he's swearing"

"MMMMM - yeah - sounds like not a great start"

"No, he, uh, well, we can't have him doing that"

"I know - hands off policy and all that. So what do you want me to do?"

"Uh, well, we just can't have him swearing and choking people"

"Oh, believe me Anita - I get that. Do you want me to come pick him up?"

"Uh, well . . . . "

"Ok, I'm on my way"


I pull up to the school they are at for part of the day. There is C hanging out playing 4 square calmly with others. When he sees me he yells "I'm not going home" and hides behind a kid (whom later proclaims to be his best friend, the very reason C was apparently able to calm down because "Rizzo" asked him to)

I approach the counsellors. It quickly starts to become clear - I wrote "don't put him in the middle of a line of kids, keep him at front or back" - what did they do??? You got it.

I wrote, even when he is managing himself fine and you wonder "why did his mom send a worker with him" - that does not mean his worker should be sent to do something else, he WILL fall apart. Guess who they decided to make the gopher to take kids to the bathroom inside and up two flights of stairs??? You got it.

I wrote, he tires easily and needs reminders to drink often. Who hadn't touched any of his drinks 4 hours into the day and hadn't sat down to rest for even a minute??? You got it.

SIGH SIGH SIGH

The good part - by the time I got there he had calmed down, shown remorse and made a friend. He begged to stay and all the counsellors convinced me that they could see the errors of their ways and had plans to make things work smoother. Luckily we are footing the bill to send his in home worker with him and she happens to be my goddaughter (read: half worker/half informant). I know at times she felt overwhelmed and helpless but she did an amazing job.

He made it through the day with no more major incidents.

I gave the counsellors permission to inform any concerned parents that the kid who shot their kid the bird and yelled MOTHER F*&^%$ at them has Tourette's and Autism. What else could I say? They seemed relieved at the idea - I don't think it had sunk in that just maybe in the heat of the moment he just wasn't able to actually control the words coming out of his mouth. When he told me he wasn't "going home" it was actually more colourful than that - then his face blanched and he turned and purposefully banged his head off the pole REALLY hard - that's how distraught he was that he had swore again.

Tomorrow is another day.

Sigh

Scheduled Breakdown

I have been hiding

From my family, friends - the world.

It is all so hard

I am so tired

So I have scheduled a breakdown and have re-entered therapy

I have not bought end of year presents or even cards for school

I am quitting my job

It is all way too much

. . . and yet . . .

It feels like a new beginning

I know we will all be ok

Better than ok

The best is yet to come

Stay tuned . . .

On Tuesday we went to follow up with the Developmental Pediatrician. I had filled out the Aspergers Questionairre (ASQ) months ago and at the routine follow up she had said we could discuss it further.

The visit was long, it was thorough. As always - I felt very supported and that they REALLY hear what I am saying there. They ask all the right questions.

Then she told me he definately qualifies for the diagnosis of Asperger's.

What???? I thought they would say this was just a screening and then make us jump through hoops and wait list after wait list to finally find out (oh wait, that's a different treatment centre) OR that she would tell me flat out there is no way he fits that diagnosis.

Nope. She showed me the papers - the charts and where he falls. He was so high it made me literally gasp. All these swirling thoughts and emotions were happening. Damn it, THIS is why I am so exhausted!!!!! She was very clear with me that this is not a case of a child being misdiagnosed up until now. This is an additional diagnosis. She didn't have to sell me on it - this is our "something more".

I knew it was coming, I've been assuming in my head he has AS and it's amazing how much easier it has been to let go of some things but to stay firm on others now that I had made peace with it. Or so I thought I had. Much like when we got the Neuropsych results back in 2005 - I felt like I had the wind knocked right out of me. As I teared up in the office I laughed and told the doctor "I honestly have no idea if these are tears of relief or sadness".

"Perhaps both" she said.

Yes, perhaps both.

Collective Bargaining

C has been branching out in his efforts to embrace self-advocacy. As a follow up to his recent plea which he felt was not heard since he has yet to be out for recess, he wrote the following today:

Dear Mrs. Teacher,

I am on strike for non fair recess practices and the only way to get me off strike is to let me go outside for recess.

The morning is the worst because I have to go to the games room and I hate the games room. I hate it because it is boring

I know everyone says the field is muddy and I have to wait but I don’t want to wait. Other kids don’t have to wait.

Please let me go outside

Sincerely,

C.

Now THAT is a letter! I helped him type it but the words are all his own. I am so proud.

As a backstory, there is a lot of talk of unions and strike in our house and community lately so where he got this terminology is pretty clear but I love how he figured out how to apply it to his situation.

Right of Passage

C lost a tooth two nights ago. He has had three loose molars for weeks and I've been shocked he hasn't been completely obsessed with freeing them from his mouth. Afterall, this was the boy I had to worry about a few years ago because he was wiggling baby teeth that were not ready to come out so much that he prematurely pulled a tooth.

We put his tooth in the tooth fairy pillow and hung it on his door. As he struggled to get to sleep I struggled with how and when we were going to finally break the news that the Tooth Fairy is in fact me. We struggled with a similar situation this past Christmas when C's staunch belief in Santa and a few choice words with a classmate lead to a huge blow out and many tears. We had contemplated telling him about Santa then but held off, deciding starting with the big red jolly guy would be way too much of a shock. (Okay - I chickened out and A didn't want to be held responsible by C for "ruining his life" as he is fond of accusing A of already).

So I sat there that night thinking now is really the time to start the process. I was inspired by a recent post by MOM-NOS and how she tackled a similar situation with her son. I loved the way she handled it, slowly and gently leading her son to the answers he needed to have. I know in my heart that to not show my son this truth is unfair - it is unlikely he will get to the truth on his own.

Or so I thought.

See, the tooth fairy, in her exhausted state fell asleep waiting for the boy to fall asleep before visiting. The money never made it into the pillow. Thinking fast in the morning I told him that was because he was awake until after midnight (whole other post) and the tooth fairy cannot come if you don't fall asleep early enough. I told him tonight she would come IF he went to sleep early. Smart right??

He was supposed to be asleep last night and instead he kept coming out for various reasons. Finally he just looks at me and says "Hey, guess what I know?" and before I could say anything he answered his own question "You are the tooth fairy".

He looked expectantly at my face, waiting for my response. In my head I spun through possible answers. Remembering MOM-NOS I looked him in the eye, all the while thinking maybe he was not ready to hear this. I forged ahead, taking a deep breath and said "you are right". His face lit up, my stomach stopped twisting in knots. He jumped up and down yelling "I knew it! I knew it" and then he asked me "Really?" a couple of times to ensure I wasn't going to change the answer. He walked around the house for a few minutes muttering to himself "my mom is the tooth fairy" and I thought "uh oh, he thinks I am THE tooth fairy!!!!" so we talked and sorted it out that I am HIS toothfairy, not THE toothfairy.

I've made him promise not to tell his brother who is only 5, has not lost a tooth and who cried desperately last week when I informed him that Hannah Montana is not real (oops). We talked about the responsibility of being the big brother and not ruining things for him. I am hopeful he can do it.

I wonder if he'll figure out Santa and the Easter Bunny after this??? He usually doesn't transfer information well from one situation to another but then again, I didn't see this coming either.

Something Else

"He has ADHD doesn't he?" says one of the mom's in our treatment group as we all sit in the waiting room, anxious for group to get under way as the room begins to fill up with more people.

Her question throws me off a little but considering we are in a "Leaky Brake" group I answer simply "Yes, amoung other things".

She glances at her husband quickly as she nods her head repeatedly, so subtle yet there. "We were lucky to have dodged that one" she says.

Her words, so simple yet laced with judgements about my son, cut through me like a knife. I try not to visibly recoil from this woman as I try to form a response. I know she has made this statement after watching C "in action" at the group - his frenzied manner, going under the table, checking out every door in the room, going into closets and closing the door behind him. Hiding out under the table and needing to be coaxed back to join us. Those not really knowing ADHD and not really knowing my son would think that was ADHD - THAT was not ADHD. What this mom can't know is that she has hit a nerve so raw with me I want to instantly cry. I've been grappling with his "behaviour" in the group - not the behaviour itself but trying to sort out what it means and feeling like it sets him even more apart from others - even those who I thought he would be most like - other kids with "Leaky Brakes". Bringing him to this group is at a great emotional cost to me and yet I am determined to see it through.

Before I answer her, my eyes wander back to my boy at the chalkboard, white residue all over his backside, and I laugh out loud and ask him "How on earth did you get chalk in the middle of your back?". He twists his head in an attempt to look for himself. He turns in circles a couple of times, trying to get a look and then stops - finally realizing his attempts are futile. My anxiety about him, his behaviour and this group are out the window. I LOVE this boy, I ADMIRE him so much.

I turn to the mom and say "Well, most of what you see with him is NOT ADHD - it's something else" and I turn away, intending to leave it at that.

I was thinking that she would understand she was beginning to cross the line but instead she quips "So what is it?". I turn and look at her, acting like I didn't quite catch her question, also hoping she might realize when she has to say it again that it's actually none of her business. In my head I am so forthright but in person I hate to be confrontational or rude - I really want her to stop. But instead she looks me intently in the eyes and with pressured, pointed speech poses her question again "So what is it if it's not ADHD? What other diagnosis does he have?".

I grapple and decide to call on sarcasm and making light of this uncomfortable situation - my two best coping mechanisms. "Oh, what doesn't he have as a diagnosis!" I say as I add a laugh and a motion with my hand as though dismissing it all in one fell swoop. "Oh yes" she says, leaning back in her chair and I think to myself - okay now she's done. Instead she once again looks intently at me and says "But do you agree with the diagnosis he does have?" and I can hear the doubt and judgment in her voice. I quickly answer "Yes, every single one of them".

"So what is it - that we see - if it's not ADHD?" she asks again. I wonder about just getting up and walking away but instead I answer "I don't know yet - we are still figuring it out".

"What do you think it is?" she fires back immediately

"I don't know yet" I answer, forcing myself to stare back in her face, willing her to back down from this.

"But what do YOU think it is? You must have some ideas?" she has moved closer to me, invading some of my personal space and I pointedly move away from her without breaking eye contact (which is KILLING me, my son is not the only one that sucks at eye contact).

With drawn out, very pointed speech I say one last time "I DON'T KNOW".

I could tell her about his early life, the adoption. I could tell her about the suspected Aspergers - I could narrow it down for her and say "possibly attachment issues and/or Aspergers". But I don't want to. This woman is not safe, she does not value or appreciate my son. She uses our discussion to make herself feel better about her circumstances, as in, "At least our kid isn't like him". That's fine - she can think what she wants but I am not sharing anything more of my son with her. She doesn't know what she is missing. She can't know the wonderful spirit of my son from watching and judging him these past few weeks. In turn I will not judge her by these few short weeks and this intense exchange, my son has taught me this. Instead I will choose to see her simply as a mom also searching for answers.

Something More

I love how life forces bring things to us in a way we least expect but are most in need of. I have been driving C back and forth, 2 hours each way, once a week for a treatment group. It's all about Tic Management and it is the hardest and the best thing we have done in a long time. Last week we also had a private meeting with the Psychologist about his OCD. The Psychologist is also the one running the Tic Management group. Before we began speaking of the OCD he had concerns about C's "activity level" at group and wanted to talk about effectively managing ADHD symptoms before we could even begin to tackle Tics or OCD - or anything really. I got where he was coming from - completely. Put C in a group situation, new people, new room and it is not going to be pretty and it is definately far from calm and orderly. That is who he is. I know it, our family and friends know it but I forget that others don't know it. I forget that they will see his frenetic behaviour and think "ADHD" when in fact it is not. I know it is not. The ADHD he has is primarily innattentive and if you could see him at home, school or familiar places you would see a much calmer and attentive boy - the ADHD meds work for what they are supposed to work for. This, what the Psychologist saw at group, is exactly part of what I am searching for more answers about as I wrote about here and here.

At the end of our private session the Psychologist looked at me and said something to the effect of "I now understand what you were trying to tell me. This isn't ADHD - it's something more".

Yes - something more.

Self Advocacy

I've not been around much . . . well, not true. I've been around but it just seems to hard to try to post. Things are great and things are horrible . . . I cannot try to explain right now but I do want to share this letter C wrote the other day.

April 19, 2009

My name is _______ and I am 10 years old and I am in the 5th Grade at ___________.

At recess everyone else goes outside but I don't. I go to the games room.

Sometimes I like to go to the games room because they have lots of games but its not very big.

Sometimes I want to go outside to play with my friends but I can't but I don't know why.

I feel upset, sad and angry that I can't go out to play.

I wish you would let me go outside.

Sincerely,

C.

The Great Debate

It's not news to anyone that I have been struggling with whether to further investigate Asperger's for C for some time. Years ago when we first became involved with the "Brake Shop" at CPRI to get the Tourette's diagnosis and services we also filled out an Asperger Rating Scale as part of the intake process and it indicated a high probability that he might qualitfy for the diagnosis. We had so much else that was front and centre, that took a back seat.

All the strategies we use with C would likely be useful for someone with Asperger's so most of the time I figure, why bother getting another diagnosis to add to the alphabet that already exists after his name? Then something will happen that cannot be adequately explained as TS or OCD or ADHD or learning diabilities. I admit, I have a hard time allowing someone to believe that my son is having a meltdown because of his TS - that's not what TS is. There are a lot of children who have TS who don't have full on meltdowns like my son. It's wrong to perpetuate false assumptions. At a school meeting a few months ago the Learning Support Teacher, who is new to the position but not to C (she was his Grade 1 teacher) shocked me by suggesting that rather than come up with a plan to help C manage some anxiety that we should "put it back on him - start making him take responsibility for how he chooses to act". Luckily the rest of the team was familiar with C and we were able to come up with a plan that worked for all of us. Truth is though, all those acronyms in all those reports in C's file mean very little to most people he will come across in life. I don't want him labelled to be minimized, put down, held back and I know that's is a possible side effect. But I can no longer fight the fact that Autism is becoming more known to people. More and more people know someone, love someone with an Autism Spectrum Disorder. The resources we most often use for C are ones written for individuals with Autism. All new government funding and initiatives, no matter how paltry, are for individuals with ASD and their families.

The last time I was at CPRI with C to see the Pediatrician I spoke to her briefly about what I have termed my own personal "Great Debate" - to pursue, or not to pursue - that is the question. At first she seemed inclined to dismiss the idea of Aspergers. I get it, he's not "brilliant" (I hate that misconception that those with Asperger's have to be brilliant at something). He seems so socially motivated. But as we talked and I explained all the things we work so hard at and yet he still struggles with - appropriate social responses, only wanting people to play so he can dictate what they do, his rigidity, his recent proclomations that he thinks in pictures and people need to stop saying so many words. People used to think things would be better if we could just get his behaviour under control. Now that he is so much calmer, why are so many of these things still an issue? In the end, she gave me a checklist to fill out and said we could discuss it further in April.

Even now though I wonder if he will be given the diagnosis or if the Psychologist will look at me and wonder how on earth I ever thought MY child might have an Autism Spectrum Disorder. Maybe I am just trying to fit a square peg in a round hole? Who knows?

But I do know that in that cehcklist the doctor gave us again to fill out - it was like a hundred items and I checked "observed" on all but 5 or 6 of the items.