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.

Another Year Older

Happy Birthday my sweet baby boy - and yes, even though you are turning 5 you are still my baby. Forever. Sorry, it's a mothers prerogative to forever and always consider you her baby - although I will try to refrain from calling you that in public - that's the best I can do.

I cannot believe how fast time is passing. Daddy was playing old home movies the other day and there you were in all your glory, sitting in your diaper on your brothers bed with his guitar on your lap singing "You give love a bad name". A stellar rendition. It seems like just yesterday you were racing around, falling every couple of feet, yelling "I'm O.k." and needing a boost to get up on the bed. Now you can reach the light switches, climb onto the counters to help yourself to a snack, and just this morning you used a knife to cut your own breakfast feast of pancakes. The questions you ask me often throw me for a loop but thank god for google so you still think your mom knows everything.

I know we butt heads often, I guess we share the same strong will even if you didn't grow in my womb. You were meant to be my son for sure, if just to keep me on my toes. You keep wanting to grow up so fast and I work hard to keep you small. But I am proud of you - you are so thoughtful and sensitive and forgiving. I think this even when I can be overheard muttering that you are too smart for your own good.

My wishes for you as you get older and explore this vast world of ours are both endless and simple: believe in yourself, be good to others and never, ever doubt for a minute that you are loved entirely and completely by your family. We love you JJ.

Merry Christmas and A Happy New Year to All!

Delivering Spring & Summer

In the past nine months, since I started my new job, I have met some dynamic and inspiring individuals. Some are living with a disability, some are parents or family members of an individual and some are working in the field, passionate about inclusion of everyone in the community. Typically conversations with new people are difficult for me, I never know what to say, I suck at small talk. With these people though, I am loving the conversations. It's almost like a drug, I get so charged by what they share. I find myself thinking new things, posing new questions to myself, challenging my former ways of thinking or doing. I LOVE it.

One of these individuals will likely never know the impact just a few of words have had on me. It was during a break at a training event and I was saying that the instructor was really opening my eyes to what we would need to do to prepare our son for adulthood. It was daunting but exhilarating at the same time. This woman, let's call her Jane, is a facilitator working with adults and their families to achieve the life they want to live, in part through individualized funding.

We were talking about giving all of our children, no matter what their challenges, the same life experiences. Many times when our children are young, respite dollars and Special Services at Home (SSAH) dollars are dedicated to providing a break for parents and fun for the child or even extra school type tutoring. What doesn't happen often enough is using these dollars for paid staff to support an individual in being a productive member of his family as he/she gets older, such as cutting the lawn or getting a part time job. Jane followed it up later by sharing with me how many individuals, because they have been given some sort of a diagnosis, have never had a job as a teen - paid or volunteer. She stressed how important it is for all of us to have those experiences. "How do you know what you absolutely hate to do if you never had to endure one of those horrible teen jobs?" as she put it. It's true - I had lots of those jobs as a teen - paper delivery, bus girl at a family run diner, later a waitress at a restaurant run by a deviant.

No matter how hard those jobs were, I learnt something from all of them. Not just how to carry multiple plates and make change but how to deal with difficult people, how assert myself and what I do not enjoy doing in life.

This is what prompted me to start making a plan for C to get a job. We thought about being a dog walker because he loves dogs but A is adamantly opposed to getting one. We have a large apartment building filled with retirees across the street but in the end I decided it would be best to wait until he was a little older for this job. Not to mention I was not too eager to have to poop and scoop for other people's dogs, cause we know I would end up doing it most of the time.

I called a weekly supplement paper here in town and was appalled at the wages they pay - 4 cents a paper. No way I could justify the time it would take to put the thing together and then delver. If I wanted him to volunteer we would pick something more worthy than an advertising conglomerate. Finally we settled on Sears catalogues. We know some other families whose kids have this job and they have had no issues. There is no prep to do the job, you can have a route as big or as small as you want and it is not every week. The intent was to have C do the route a couple of times with me and then I would begin having his support workers go with him.

The ideas behind this are three-fold, learn about responsibility, earn some money and connect with the community. Already after three separate deliveries I see people chatting it up with my boy and I marvel at how easy he finds it to make small talk. Older people seem to delight in his little phrases such as "gee, it's a glorious day isn't it?" (it was dark, windy and frigidly cold). This is one of the ways our son will be known and connect with his community which is so important to vulnerable people.

What I didn't stop to think about when I called and signed him up in October was snow. Where we live we don't tend to get a lot of snow, particularly not until after Christmas. We got dumped on last week, the same day that I pulled into my driveway after driving 4 hours round trip to pick up my mother. There in the driveway before me sat stacks of catalogues being quickly covered in snow. I also didn't stop to ask more questions about the catalogues being delivered just before Christmas. Did you know that the Spring & Summer catalogue needed to be delivered by today? Did you know it is about 1.5 inches thick and weighs a ton (okay I exaggerate but the bundles did bend the wheel in our wagon from the sheer weight)? I also didn't stop to realize that our 60 houses would more than double because people had ordered for Christmas which means they automatically get the next catalogue.

I was determined not to give up, we would get this done. But I ended up being THAT mom, the one that drives around in her van while her son leaps out delivering to each house. I, at times, thought it was going to kill me. But you know, last night while C and I drove around in the frigid cold with the heat on high and a flashlight in hand to try to make out house numbers, I realized I was having fun. Life had thrown us a curveball and we were figuring it out together. C's whining actually ceased last night when we got to the last bundle and the end was clearly in sight. We were working on pure adrenaline as we raced to see who could deliver to the house and get back to the van first. He fell into bed last night and was asleep within minutes, a rarity for him. This morning we are still hi-fiving each other over our accomplishment.

My Sweet, Sweet Boy

One of the hardest parts about having a child with complex needs is balancing that child's needs with those of siblings. C has been having a rough couple of weeks and so J has been slightly neglected the past few weeks. He was becoming moody and clingy and I KNEW I needed to make an effort to spend some one on one time with him. So today I sent C with his Respite worker and bundled J up to go off and see Santa.

It was the fastest trip ever. When we got to the mall there was a child just finishing and . . . J was next. He climbed right up on Santa's lap and told him he wants "Lego Batman" (a game for the Nintendo Ds he has been promised for his 5th Birthday) and a "Slingy" which of course is a "Slinky". Santa did a visible double take at that request and gave a little chuckle. They had quite a chat which I couldn't hear the details of -"It's personal mom" I was told when I enquired later. Of course I bought the picture package - he looked adorable and we had done the same for C. We are determined not to short change him on memories like these just because he's the youngest.

Then off we went to A&W for a "Cheese Hamburger" at the food court. I must say it did feel great giving him my undivided attention and basking in his 4 year old delight at every little happening. While standing in line waiting for his burger to be ready a man approached the cashier. His jacket was large and long on what was obviously a slight frame. He wore a sweater under it with the hood pulled over his head, effectively masking his face from us at the side.

When he approached, others waiting for their food moved away, an uncomfortable silence fell over the small crowd. He began to order, struggling to get his words out. His deep baratone voice moving up and down octaves loudly as he strained to get the words out. His body was in constant motion - not extreme but definately noticeable as he placed his order with the help of the lovely cashier who never let her smile waver and who pointed to the pictures on the board to make sure she had understood his request. As the young man paid for his meal I found myself filled with both happiness and sadness. Here before me stood someone who reminded me so much of my son. He was at the mall, shopping and ordering a meal on his own. Obviously very independent - nothing to indicate that he was anything other than self sufficient and happy.

But there was also the reaction of the other people, the assumption that he was someone to steer clear of. I was saddened by the reaction of others. I did feel a little sad that it was obviously so hard for him to verbally communicate. I worry about this for my own son. I can't help but think how frustrating that must be to want to get words out and not be able to. Then a little voice piped up and I felt a tugging at my coat. There was J hiding behind me, obvious fear in his large eyes as he whispered "mommy, where is that man from?".

Oh how my heart broke. I know he is 4 years old and had every reason to be uncertain about this man. But why was it so scary, why was it so foregin to my boy who lovingly interacts with his older brother all day everyday who sometimes cannot get a word out without stuttering and repeating himself loudly? He was scared of this man but I was able to explain that the man just had trouble getting his words out like C and wasn't it nice for the lady to wait patiently and to help sometimes. We talked at our table about how one day C will be a big man like that and maybe he will still have trouble getting his own words out.

And my sweet, sweet boy leaned over and put his hand on mine and said "and I will be like that lady, I will wait with a smile and I will help when I can".

More Firsts

Going with the theme of "first" I thought this would be fun - hopefully I won't live to regret it . . .

1. Who was your FIRST prom date?
Hmmm - Didn't go, it should have been Bob but see # 22 for why I didn't

2. Do you still talk to your FIRST love?
Talk no, but we are "friends" on Facebook

3. What was your FIRST alcoholic drink?
Beer - from my Dad's bottle but just a sip here and there. My first entire alcoholic drink was either home made red wine or tequila - reason I don't know is that my friend Julie and I got into her parents stash and although I know that is what we consumed that night I have no recollection of which came first. I will say that to mix them was NOT a good idea.

4. What was your FIRST job?
Paper route when I was 10- I delivered the Sunday Sun once a week (yup, on Sundays smart*^%)

5. What was your FIRST car?
A blue Ford Escort, hatchback. Had my first kiss in that car

6. Who was the FIRST person to text you today?
No one, I don't get a lot of texts

7. Who is the FIRST person you thought of this morning?
J, cause he is sick and was sleeping ON me when I woke up this morning.

8. Who was your FIRST grade teacher?
Mrs. Williams. She was tough but nice.

9. Where did you go on your FIRST ride on an airplane?
1992 to Newfoundland with my parents to see my Dad's family. Haven't been on a plane since.

10. Who was your FIRST best friend and are you still friends with them?
Judy York - lost touch when we both moved a bunch of times. She had a mom who made chocolate chip pancakes and one of those roller piano's where we would sit and "play" songs for hours - "Bye Bye Miss American Pie" over and over and over. We would also make our own perfume and colour it with tissue paper. Her mother must have been a Saint.

11. What was your FIRST sport played?
Baseball in the neighbourhood, was never on an organized team.

12. Where was your FIRST sleep over?
Could have been Judy's house - or Claudia who moved in down the street the year Judy moved the first time and abandoned me (do I sound bitter? lol)

13. Who was the FIRST person you talked to today?
The lady from the Cable company

14. Whose wedding were you in the FIRST time?
My Aunt Rhonda and Uncle Mark's - I was 10 and it was a beautiful wedding.

15. What was the FIRST thing you did this morning?
Groaned and then tried to extricate myself out from under a sick child with a nasty oozing ear

16. What was the FIRST concert you ever went to?
Spin Doctors at Canada's Wonderland (I think)

17. FIRST tattoo or piercing?
Ears when I was around 7. They had already done one ear when I piped in with "when are you starting?"

18. FIRST foreign country you went to?
The U.S. (stop laughing) when I was in first year University I told my friend that I had never been out of Canada so we jumped in the car at 2 o'clock in the morning in the middle of a snow storm and drove to Niagra Falls where he proceeded to ask the Customs Officer where the nearest Denny's was. We pigged out and then went back to school.

19. What was your FIRST run in with the law?
I haven't told many people about this but when I was 15 I went up to Tobermory to stay with my Aunt and Uncle to work for the summer at a motel. All the other summer girls were much older and as a group we "hooked up" with a construction crew of highschool/University guys and we were walking down the side of the highway to go get something to eat. Two of the guys were drinking beer as we went and carrying a cooler between them (soon to find out it was filled with beer too) - a cop came along and the guys all tossed their beer and started to run. Nothing happened except the oldest guy in the bunch was given a ticket. I thought I was so cool and old!

20. When was your FIRST detention?
I think in the seventh grade my teacher gave me a detention when I refused to answer him. He had told me to "shut up" when we were on a school trip so for 3 weeks I did just that. For the record, he "caved" first and apologized to me before I would start talking again. The first time I ever stood up for myself - if only I knew how many times later in life I would have to stand up for not only myself but also my kids.

21. What was the FIRST state you lived in?
Never lived in a state, I'm in Canada - we have provinces and I have always lived in Ontario.

22. Who was the FIRST person to break your heart?
Bob.

23. Who was your FIRST roommate?
First year University - Katie (pierogi butt) and Kristen (honker) - they were both much older than I was and I had so much to learn. I am sure I was annoying. Looking back though, considering how much older they were at the time, they really should have known better on so many issues.

24. Where did you go on your FIRST limo ride?
Never had one. Sad isn't it?

Wanna try? Consider yourself tagged!
Link back to me and leave a comment here when you post so I can be nosey just like Renee who I got this off of.

Firsts

I know I haven't been around, I'd like to be able to say it's because I have been SOOOOO busy. But you know what? I'd be lying and the truth is so much more satisfying. It's because I seem to have found my groove, the one where I am a good mother and wife AND I work outside the home. It's not perfect but it is so much better and more relaxed than it used to be. Balance in my life, a first for me.

I am not the only one having firsts. C now has his first paying job - delivering Sears catalogues. This fits with my new mission to help build his community (more on that in another post). It is a lot of work and I end up spending a lot of time focusing him enough to get them delivered but I turn around and pay him as soon as he delivers the last one - I figure in this situation immediate gratification will pay off more than waiting the two weeks it would take the company to pay. It's great exercise for us but I might have to scale to route back. Seems someone (ok, me) was overly ambitious and took on several routes that take us 3 or 4 days after school to finish the deliveries.

C also began to walk himself to school last week - he's in Grade 5 and we live 3 houses down from the school. Seemed like it was time - even if what pushed me to ok it was injuring my knee last weekend which made it hard to get around on Monday. He is so proud of himself and so are we. As he walks he turns around repeatedly to check in with us as we stand on the porch watching him.

These changes are all so wonderful. They make my heart full, re-energizing me and giving me purpose and hope for the future.