...so I AM long winded....

I wasn't going to post anything today.. really I wasn't lol Then I thought if I was going to make a blog perhaps I should give a bit of personal info about who I am... that MAYBE someone out there SOMEONE is going to read this that doesn`t actually "really" know me.

I am a 36 year old woman/wife/mother of two son's who happen to have multiple "challenges" I Grew up In the Niagara area of Southern Ontario- One brother- I went to french immersion from grade 7.. got pretty decent grades when I felt like it :p I started piano lessons at 4 years old... continued until I was turning 16 and I can legally teach if I actually practiced and had the patience anymore... I also played viola for years- even played with the niagara youth orchestra when I was 17 but got told to leave when I aquired a mohawk hairstyle and to come back once it grew in... I never did lol. That about says it all for my attitude in highschool :)

After highschool I went to Cappa school of prof. hairstyling and makeup art. I never completed all the hours for hair although i did get my certificate for make up artistry... at the time i worked in a hair salon during the day and on weekends sang lead in bands and played keyboards. I also had jobs in dead end places just to keep some money coming in... but That was going to be my career- a singer/musician... that was what I always WANTED to do.. what i was GOOD at... everything else was a side line.. Shortly after that I had Russell my first son... and that changed the course of history for me.

Of course when you become a mother its only natural to change, mature and life experience will obviously take you in direction you never thought possible before kids... however... when Russell was born it was totally life altering. I discovered I was a mother of a special needs child. My life was never ever the same again... I was destined never to be a regular mother either. Perhaps I will get into that long long road in another post... right now that is a rambling I really dont feel like getting into to..the readers digest version: we had another son when russell was 6.. he too has special needs.. both kids have multiple diagnoses.. and its taken numerous years and WRONG diagnoses... and some heavy advocating and pushing from my corner to get where we are right now. Let's just say Niagara is NOT the place to be for pediatrics... we currently go to Toronto.. Devon is diagnosed with PDD-NOS+ tourettes and Russell who currently has a dx of bipolar/ocd/adhd/ld's + tics will also be re-evaluated at the toronto western hospital may also be identified with similar spectrum disorders... right now we are also waiting for a referal for genetic testing at sick kids for Devon.. as well as multiple other referals for physical problems he has.

My whole adult life has centered around these kids... yes most parents do centre their life around their kids.. but unlike most... parents of special needs children seem to have NO outside life other than their kids.. believe me I have tried. I went back to college in 1997 for culinary management thinking I would get a life.. become a chef.. get a career and become something other than MOM.... and along came Devon. Not to mention my husband is on the road 4 -5 days a week. I used to be really resentful... not towards the kids.. but life in general for dealing me such a crappy hand..for feeling discontentment etc. I have become resigned. My life isnt crappy at all. God gave me these kids for a reason. He knew what I was capable of. He knew I could handle it. I love my kids and I love being a mother.THIS is my job and its just as rewarding then an outside career could give me. If I was guaranteed a healthy child i would perhaps consider a third... but Noone but God can do that and I really dont know if I want to take that risk and deal with a third all over again... i dont have the energy to be a mother to three special needs kids. Its draining. Between drs. appts and school calling...rages.. drama..therapies..Every aspect of your life feels like its not your own-its a 24 hour a day on call job.. 7 days a week... and noone is coming in to take over your shift.

I have learned over the years to take bits and pieces of time..of little joys... I went from a really big social getter... a lead singer and someone always social, outgoing, trendy etc to someone who appreciates a 10 minute bath with a book in peace and my kids will be 8 and 14 in April ( its not like I have babies/toddlers) I appreciate and value the little things now... when the kids get along and interact.. when they smile and laugh... when i get good daily reports from ea's at school... when they are able to have friends over and actually PLAY or interact with a peer. When Russell empties the dishwasher, shovels the snow or does a load of laundry!! When Devon actually makes "contact" with ME ( puts an arm around me or says i love you or just even how are you?!)...or when he has a good bus ride home. When my husband comes home on a tuesday and puts his arms around me after not being home for almost 5 days. These are my joys and triumphs. They may seem small and insignificant to most.. but they mean the world to me, esp. knowing how far we have come.

I do find it hard to find a balance... in the sense that I cant talk "shop" to " normal" parents... they look at you like you have lost your friggen mind... they offer you the craziest advice or they will run very fast never to be seen from again...Its a fact- the human race are the most judgmental bunch and parents are the worst. But in the same sense I DONT want to talk shop all the time- therefore I dont want to sign up for every support group there is and talk talk talk all the time about meds, symptoms and disorders... i would love to have just a friend or two who understands where i am coming from... where my kids can BE themselves.. not judged.. where i can say certain things out of the blue about autism or mental illness and they TRULY get it.. not just empathize or TRY to... and then we MOVE ON..and maybe THEY have kids that MY kids can play with too...a parent who GETS it.. but who doesnt want to sit there and talk about the latest in therapies and meds 24 hours a day...but if it comes up its welcomed... its hard to explain. I want another parent(s) who doesnt try and pull their kids in the house when they see mine coming down the street... maybe one that is willing to educate themselves... to read about autism and other disorders... to know hey thats just part of his disorder... that kid's NOT mean or a brat or a potential serial killer.. and we arent bad parents!!!( WEIRD DEFINATELY BAD NO lol)

I am sick of being a hermit where ever we go.. and I am sick of watching devon esp. being treated like the hunchback of notre dame. I am sick of having the feeling of wanting to explain that my son has autism/tourettes or "something wrong" when he acts differently or odd in public... if he tics.. or has incoherent speech, rages.. or no eye contact..or gets into someones face or too close...or just plain acts DEVON WEIRD lol. why SHOULD I? is it ANYONES business? who is it really effecting if my child wants to shout fart fart fart or makes weird faces and head jerks in the drs office???? But as a mother I am embarrassed FOR HIM... never BECAUSE of him... but embarrassed because of others reactions TO him. yes.. thats MY problem i suppose... but tell me that wouldnt be YOUR problem TOO if YOU were the parent/mother of a child like this...all the times i think what is my child thinking when people stare?? or comment?? The mother bear kicks into overdrive and my gut reaction would be to tell them all to go to hell... but instead i quietly tell my son shhh,.. devon youre really loud..( like he can control a tic lol) or personal space... or if hes raging and screaming, i smile like I am june cleaver and say " my son has autism"

When we are home as a family we dont notice alot of what outsiders would prob. look at and think omg this family is NUTS... tics and other weird behaviours go generally unnoticed or looked at withA LOT of humour here. This is the safe zone. Russell acts TOTALLY different with us then he does in public.. in public hes subdued... even quiet when he really tries or doesnt know the person... but russell is also alot older and has learned over the years how to supress certain tics and other ocd etc. symptoms. At home hes like a flea or a tick.. bouncing off the wall, body jerking with tics and talking a million miles a minute.. his facial expressions so over exagerated you cant help think a trick wind will make his face stay that way...he plays weird ocd games where he tries and beats it to the stairs before the door closes or can close the cupboards "symetrically" before the freezer does to make himself feel better. devon eats with his hands and food flies out because he wont SHUT UP long enough to actually swallow and you have to redirect him 100% of the time. he rambles on and on about NOTHING...ALL the time and you have get into his face and make eye contact with him ( or TRY to) just to get a word in.So I have TWO kids talking NON STOP over each other really really FAST and LOUDLY, constantly. It takes devon AND russell at least an hour to accomplish a 10 minute task... so if u need to be somewhere and u need to have them ready be prepared to start 2 hours AHEAD.. and NO I am not saying this to be funny. My mornings are set in stone with routine.. and I am the drill seargent/referee/director... i feel like one of those guys on an air strip with the two lights/ and head set guiding the planes in... i am exhausted by 8am once the bus comes. so- I come home.. and if Dean isnt home i get on the computer with my coffee and read the news and facebook and have downtime... if deans home we have coffee and talk before we go out and run around... but i make SURE I have downtime..Dean and I even slip in a nap or two here and there.... cuddle.. talk... our time. who cares if its 1oam? lol when dean isnt home i read... ALOT... once the kids are asleep i tend to read for hours.. or I take a long jaccuzzi and read...or I get on the computer THEN I read lol.I still love to cook and entertain...or just have people over for coffee... I also go on cleaning binges where i pull apart and organize things like crazy in here.. mostly in the cold months.. I would love to get an outside job even a day or two a week but with dean on the road so much and with the kids right now it just isnt possible. I wish Dean was home more often but I have learned to cope over the past 13 years...and i havent ruled out 6/49 yet ;)

anyway.. this isnt a BLOG its a bloody NOVEL. and I am giving up my READING time... and I am sure all of you ( yeah the 1 or 2 of u who are actually reading this.. or actually got to the end of this lol) are thinking wow Su... you DO ramble...

Its supposed to be 12 degrees tomorrow.. I am hoping the rest of the snow is gone... you know we are going to get hit again with another huge storm in a week or so... sigh... I wish we could just skip the next 2 months... however 2009 is already going by quickly... mid feb already??? WOW.

dean comes home tomorrow... hes running really really late this week. he didnt get out of miami until 930 pm saturday night... which is LATE,. hes usually out of there in the early afternoon, so hes not even out of PA yet and its midnight.... needless to say hes extremely tired right now... and hes still got to go all the way to toronto and unload before he can crash.... poor guy. I think he had a whole 4 hours sleep last night too. we have to go up to Toronto wednesday,.. both kids have appts at the tourettes clinic.. devon at 11am and russell at 1.. so we wont be out of there till 4 or so... its going to be a long day!!

anyway... until next time...

Su