May 24th 2009

Second cup of coffee... 7 44am sunday morning... all kids ( including Robbie) are still asleep... so why am I even up? Why did I get up an hour ago?... no idea.. prob. to escape into the quiet...any normal person that went to bed after midnight would be trying to sleep in... me? I am as I usually am trying to squeeze in as much quiet "me" time as I can... I love early mornings.. in the peace and quiet. If I didnt have to worry about Devon getting up and what he would get into, or him freaking out I would go for a very early morning walk by myself. The birds are chirping.. the air has that feeling of pre- thundershower.. and sitting beside the window in the games room looking out makes me feel very cagey. Of course in the 2 days that dean is home i never get to go for an early morning walk either- they are school days for one... I get up and do my motherly duties..but even in the summer i feel as if I am tied here as always. School ends June 24th. 32 days left if you include the weekends..I dread it. I dread the lack of routine for Devon who without it melts down and becomes something i cant recognise... I hate the pressures it puts on me as a caregiver to Devon first- not a mother but a caregiver to an autistic child with multiple problems... there are no breaks for me at all once summer comes.. no respite of a few short hours so i can clear my mind and restore my energy..with dean having taken his only vacation there is no family week now to look forward to. I have tried to plot a thousand times in my head of how possibly we can even put aside a few bucks a week to allow him a week off in august... it just wont happen. Too many bills.. too many obligations and of course not enough money to go around.

I think of the countless days of summer ahead where Devon will be waiting very unpatiently for his friend across the street to come home from his array of sports activities every day to play with him, ringing his doorbell every 10 minutes... some activitities 2x a day like yesterday- they went to baseball in the morning.. came home for an hour and out again for lacrosse... Devon was devestated. I dont understand how so many parents feel they have to put their kids in so many different sports teams.. when do they have time for socializing or fun? or even a proper MEAL? I never even saw the kids yesterday go inside for lunch.. or a snack.. and on to the next event.. scary. Where in the heck do they even come up with the money to pay for it all? The equipment alone costs a fortune.. They have their kids in soccer, hockey, lacrosse, baseball right now. Who am I to judge I guess...They feel like they are keeping them active.

Summer is not fun here. I wish Dean was home- it makes it so much harder, esp. on weekends when I see other families together- bbqs.. parties.. festivals.. doing things.. and we are reduced to a voice on a phone. My mother occasionally comes up for a coffee for an hour.. vicky comes over at night perhaps 2x a week for an hour here or there... other than that I am here alone with the kids.. trying to entertain myself when the kids arent fighting or Devon isnt needing me for something by cleaning or reading/the computer.. or now the treadmill. I wish Devon had a friend- other then nathan across the street.. someone he can just be himself with- and just play with him for a couple of hours.someone on his level. Someone who wont judge him when they cant understand him- or critisize him when he cant possibly keep up... and a parent of this child that understands and empathasizes with what the situation/issues are without a lengthy explantion of diagnosis and definitions of what this or that means when it comes to symptoms/behaviours and prognosis.

Devon is up now. he came in, looked at me.. i said good morning... and he walked away without a word... now hes back asking for "brown pieces of lego" that hes accusing russell of having in his room and he needs them NOW... sigh... i told him i am NOT going into russells room when him and robbie are sleeping... there will be world war 3 here of course... He asked me "is it friday today?" even though he didnt have school yesterday so he should know its the weekend.. but the difference between"should know" and "does know" is just something i have learned to accept.

I miss being a real mother... a mother not of an somewhat independant teen- ( who also needs prompting and shaping- but perhaps not the same child like mothering like before) but being a mother of a small child... I dont get to be that with Devon. There isnt the connection there.. by connection I mean he doesnt connect with people at all- you cant teach him things like you normally can a little one.. cant do arts and crafts or bake ( he will just make one holy mess- and i dont mean because hes really getting into it lol or just talk to and they listen to you and laugh or offer their kid like opinions... you cant carry on a conversation... one that really makes SENSE. he doesnt have that connection.. the processing skill.. he talks about things hes obsessed about- lego- video games- pokeman etc.. and doesnt care if youre even really listening- babbles on and on... but if you tried to take him for a walk and talk about nature or what youre seeing on the way he couldnt offer you more than a few short words in response ONLY if you asked him something 20 times.. he doesnt offer anything... you cant just play with him like I could even with russell. He speaks out of context.. when you ask him something he might give you a yes or no.. but its back to a devon topic instantly...at least when russell was smaller we could kinda of do things when he was more rational.. and our conversations and times together were always interactive. Devon is as far from interactive as possible.

I am having all sorts of weird thoughts about whether or not to even think about having another child. I wish I could be guarenteed a healthy one... and perhaps skip the baby years ;) these are the 2 things that are truely preventing me from really wanting to do it all over. Am I being selfish for not wanting to give up my games room? for not wanting to get up in the middle of the night with yet another one( putting devon aside here- and all of HIS needs here... which take up most of my waking time) but I dont really know if i have the energy or the frame of mind to do it again at my age...and what IF its another child with this genetic disorder?? Even with genetic counselling- at this time i know nothing about since sick kids still hasnt given me full results and an appt to go through them- so hypothetically speaking- even IF I knew I could have a CHOICE of isolating the gene.. or should be callous enough to say- picking the right egg.. yes I am putting it out there... am I willing to do it again? I really dont know what parenting healthy child IS... a normal functioning child.. i have had 14 long years of drs, rages, advocating, fighting the system.. therapies.. meds.. isolation... special ed.. caregiving. I could NOT do it again. However, I crave and long to be a normal mother- whatever that is. lol I have seen Dean with other kids.. babies.. esp. girls.. I know in his heart he longs for a little girl.. although he would never admit that to me.. but i have heard him talk in such ways that i know.. and interact with girl babies and little girls in such ways that its obvious. or- a boy- a healthy normal functioning boy that could carry on the Bilski name.. I know he secretly wishes we had healthy children but refuses to talk about it... I wish I knew what God wanted from me... or what he has planned. If I had another child i would never have MY life back at all... i am at that point at least whre devon is in school full time.. i get my mondays and tuesday breaks...Dean and I get alone time when hes home now..and i dont have a baby tying me down ... and how fair would that be to devon who needs me like he does.. or to the baby because of devon?... Do I really want to add an extra stressor like a BABY??? But I also cant deny what I feel either..and its not simple like just the pangs of my clock ticking away either.. I wish it was that simple...i wish i had all the answers or someone i could talk to that would really understand.

9am now.. I dont expect russell or robbie to get before noon. I actually hope they DON'T and that I can distract devon enough to stay UP here..then all will be quiet. ( I hope) devon is downstairs into something.. i asked him what are you doing... i get a NOTHING... hmmm..every light is on from here to downstairs too... I just home he doesnt get it into his head to go outside at the moment either and go call on nathan... for one the dog likes to run out.. and two.. i am still in my pjs so i dont feel like running outside... devon is also still in pjs.. although it wouldnt matter to him what he was wearing. MAN I wish Dean was home. Devon doesnt get into as much or run outside as much when hes here...

anyway... i better go see whats hes up too... grab myself another coffee and get some kind of motivation to clean the house this morning since i didnt do it yesterday...i did manage to vacuum the games room however at 11pm... :p

till i feel like ranting again- or at least get a chance to-