Friday, December 31, 2010

The New Year

I won't kid around, this past year has been the hardest one ever. And its not because of just autism....I've had friends pass away, family pass away. Family affected by cancer and old age, people close to me losing family and friends. Loss of jobs and new realizations that my dear sweet Wolverine may indeed have ADHD. Sadly the darkness has sometimes outweighed the laughter this year. But I have learned a lot and even though I've lost a lot I keep going. Because I'm still here and there are lots of blessing to still have and enjoy.

Sooooo here is where it all changes! I'm not going to say that 2011 is going to be my year to shine! Hardly.... What I will say is that this will be the year of change, this is going to be the year that I make a difference in my family, to my kids to my community and to myself. This is going to be the year that I stop just putting up with the lack of progress but that I push all I can to make progress happen.  I refuse to look back, I live with enough regression I refuse to add to it.

There is going to be one last blog about this past year and it will be my christmas blog....only because there is so much to let out about the events.

One last thing.....I'm grateful for the friends that I have, and for the ones that I have made. My twitter buds who on a daily basis make me laugh, smile and cry all in a good way. We are the tired warriors who will never let life get us down no matter what stands in our way. I love you guys!

Tuesday, December 28, 2010

I have returned

So Christmas was good (ummmmm yea good) but now we are in recovery mode, which is why I haven't been here to blog. But I think today was the first day we haven't had a meltdown before noon. So I shall return to blogging tonight as usual. I hope everyone had a good holiday!

Tuesday, December 21, 2010

To lie or not to lie.

So  finally this year is the first year that Racer is finally realizing holidays as something other then just another day. So I've been planning things and making traditions, its been fun to create memories for him that will last for him. And now I can be prepared for next year....I'm excited!!!!

But a few things have happened in all this realization....its brought lots and lots of questions. One that is my all day favorite is "is Santa coming today?" ummmm did I say it was my favorite? No that's Racers favorite question lol. Anyways I think to prevent that next year I'm going to get a advent calendar. He's also starting to realize amounts of time and how somethings take longer then others.

Soooo this brings me to the point of my blog. Last night very late like always after watching a Christmas commercial .....Racer comes to me and looks me in the eye and says "Is Santa real?"  I know right!!! First off EYE CONTACT!!!! Secondly A FULL QUESTION AND I UNDERSTOOD HIM!!!! Ok ok so I was giddy to say the least but, I didn't blink a eye and said "yes Santa is real" He seemed to accept it and bounced off to watch his movie again. But left me sitting in front of my computer wondering if I should have lied to my very literal son. I've actually sat and wrestled with the concept all day today. Should I have lied to him or just told him the truth? I kind of feel that in my house that I've already deprived the other YuckMouths of so many other things, why would I want to ruin it for the rest of them. And at the same time thinking that lie, as little as it is will haunt me forever when he realizes and remembers that I lied to him once. And trust me he will remember! I'm still living down pulling of band aides from his arm from last year!

A friend from twitter sent me a link and it was extremely helpful and I hope that I can work with that the next time this question comes up, because with Racer I know it will.

So what do you guys think!? To lie or not to lie??

Monday, December 20, 2010

My son.....written July 11th 2008

Ive wanted to write this blog for a very long time and I haven't been sure where to start or even explain. But life has changed for me and my family and thngs have become unsure and even harder then I imagined they could ever be. I'm writing this to share with my friends and family and anyone else who reads this and might have something to share also.

My son has Autism........and for those who don't know what that means, here it is
Autism is a complex developmental disorder that appears in the first 3 years of life, although it is sometimes diagnosed much later. It affects the brain's normal development of social and communication skills.
Common features of autism include impaired social interactions, impaired verbal and nonverbal communication, problems processing information from the senses, and restricted and repetitive patterns of behavior.

Now he's been tested and they say he has it but it seems mild and with intensive therapy he may get better. But that he will always have it, its more a matter of learning to cope with it and teach him how to live with it. I'm not sure what the future holds for my son, my family, or myself. It feels strange that now his behavior has a name, when all this time he's just been my son....a heathy, happy, toddler. But it makes sense to me now and I guess we try and move on and move forward. But for now we deal with the day to day and get him the help he needs.
 I wish I could wear a shirt that says "please don't judge my son, he can't help it". Because we get looks and stares like we're being bad parents. I was on a bus recently where my son had a bad moment and he was throwing a fit and wouldn't sit still, and he's screaming and crying and through his tears and screams I hear a voice shout "Is someone hurting you?!" And i come to find out that it was the bus driver who shouted this and I understand that she has no clue what I'm dealing with but she also had no clue what was going on behind her. I along with my family will have to deal with stupid people for the rest of our lives, lets just hope they aren't always this clueless

Monday, December 13, 2010

Finally......A win for our side!!!!

So through all the struggles, the ups and downs of autism, (lately more downs then ups) I FINALLY GET A WIN!!!!!

Racer has always hated nicknames, but only his own. He couldn't understand why we couldn't just call him Racer it is after all his name. But me being mommy and all  the kids have cute lil loving names I have given them, I've kept pushing, trying all sorts of different names. But each has failed epically each and every time. I had almost given up till it came to me! SmushFace FTW!!!! So here is how I explain it for ya'll

As much as it saddens me Racer isn't much of a joker kind of guy, he hates the silly without a point. And I love being silly with the YuckMouths, but Racer only takes so much till he makes the smush face and says MOM. Then I know my silly time is up, but I love that face he makes. He does it in the morning when I find him in my bed and I say "hey ur in my bed". Its the only time I get any kind of clue that he's done before a meltdown happens and I cling to that. So when I started calling him that he didn't do his usual "but my name is Racer" and instead he said "yes that's me ur SmushFace" I LOVE IT!!!!

Friday, December 10, 2010

What I wish I had known then

I think back a few years ago, all the struggles we first encountered as a family dealing with autism. All the books I read and the utter confusion of everything I read. Nothing made sense and it made us feel very alone. All the questions that went unanswered all the fears and the lack of support. I remember reading Jenny McCarthy's book and thinking about how strong she was and how she fought for her son. I remembered thinking she was my freaking hero that if she could do it so could I. I could fix my son, I could cure him of all his problems. The only problem with that as I soon came to realize that you can't cure what is already there. I couldn't muffle him or make him live in our world since he was so safe and secure in his. What I did learn is that I had to figure out how to reach him and in those early years all there was was silence. Silence and odd words here and there, so much frustration for everyone.

I think its wrong to want a cure for my son, because as I look back at him as a infant he was always just a little off, there was always something different about him. And we've come to love him for his little quirks and all the things that make him different. So how can I cure him of himself? What would be left of him if I did that? I love his honesty even if sometimes its just a lil to honest for society. I love that he lives in reality, I can't fake him out at all ever. But that's what also makes me sad, he lives in a very realistic world and in that world airplanes go to airports and cars drive to houses, there is no "hold your horses" or wait just a second. But none of that really matters much anymore, what I want most for Racer is to be happy. And on a very good day he is, there is no stress, there are no meltdowns or sensory overloads. And those are the days that I wish I could capture and let the world see. His smush face he gives me when I'm being to silly for him, its those days that melt all the other days away.

But I wish I had known that sooner, so much missed time with him because we were doing what we thought was best. I would never give up any time with Racer in the hopes of curing him I love every inch of what makes him unique. There are things that I wish I could make better for him but all that will come in time. I have hope for him, but that hope wasn't always there but I can deal with that now.

I think what I wish for my readers to come away from when they read my blogs is that when it all seems so dark and you can't see two feet in front of you....there is always hope. Because hope is all we have to hold on too.

Wednesday, December 8, 2010

Stuck in Time

When I look at my kids I can sometimes see the future them, my momma hen she's gonna be someones boss lol she just has that way about her caring and loving but don't get in her way or she's knock you out. My Wolverine, he's gonna play sports or like he's always said be a armyguy like his uncle (but in the marines) he's a bruiser but he cares about his sibs. And you can't tell by looking at him but he loves to hug his mommy I see his heart and his strength. My lil pigpen she is my drama mama beauty queen, loves to be the center of attention and taking pics. She is Racer heart all the wonderful things about Racer she sees and it shines through her. My oldest teens lol even though they drive me bonkers they are going to do great things because underneath all that teenage crap they are great people because they have wonderful family standing behind them pushing them all the way to the finish line. Then there is the baby, she doesn't do much now but she is so smart and wide eyed and always listening. And here is where the tears come, I look at Racer and see all the potential all the things I hope for him but I feel stuck in time because his future to me is clouded.

Now I know what your going to say, that there are so many possibilities out there for him, chances for him to succeed. I love my son, I love who he is and regardless of the things I know about him, his limitations I always hope for big things. That is all I have is hope, I read so many stories of children moving on to college, moving out and living productive lives with autism. But we are stuck in time with him, sensory wise and socially sometimes it brings tears to my eyes at how much he is going to have to struggle in those areas in order to make his way through life. There are so many things I want him to be able to do now that I can't see the future because we are stuck here.

Now I have to also say that he has come such a long way. If you were to have seen him 2 years ago he was not the same child, non verbal, still so babyish at age 3. Those days seem so far away, in such a dark time for the entire family because we didn't have a clear clue as to what we were dealing with. Hell we still don't some days. Everyday is adventure and new insight to who Racer is. What I know right now is that my son is happy, I know he loves me even if he can't say it to me. I can look deep into his eyes even if its just for a quick second and I see his soul, his love for us. And even if he can't always cuddle I know that he wants that deep affection when he sits at my side. When I see him wrestle with daddy and his sibs I know that he wants to be close to them. And when he lets his grandma hug him its  means a lot because he doesn't let anyone who doesn't live in this house touch him. So even if we are stuck in time right now I'm going to cherish every second with my son....because tomorrow always brings something different.

Tuesday, December 7, 2010

Random weekend and the Rain

After last week I was ready to just punch someone in the throat. It didn't really matter who preferably some random stranger or criminal. The whole YM house was tired and over worked and just run down, Racer was stimming all over the place and the screaming never stopped it seemed. The weekend rolled around and for once the entire house slept till 930am or so. That's when I know my YM's are tired, they sleep in and that almost never happens on a weekend.

I'd have to say for the most part it was a quiet weekend, we snacked and watched movies. I went out with my mom and 3 of the YM's for a lil grandma day. We haven't done that in a while and the kids love seeing her and spending time with her and I love getting out of the house for a bit. The day went well with my mom but I've come to realize that I need like one of those stupid looking leash things for Racer. He doesn't wander around or even leave my side but he has a really bad habit of taking off if we split up. He does it every time and I know where he's gone but if he walks off with whoever left he doesn't say anything to them just follows silently behind them till they notice he's there. Its scary at first because he tends to be very quiet when we are out unless he's got a million questions for you all of which he wants honest answers for. Secretly its part of the reason I don't always enjoy taking him places with me. He's a great listener and follows the rules but in this area his judgment gets the best of him and maybe he figures that he's not wandering off if he's still with an adult he knows.

Which brings us to sunday night, Racer is tired from the long day with me. We still had to do prep for YM daddy's radio show  (shameless plug) . He did a show about autism and the movies if anyone following is interested in listening to it.  So everything went well, then the freaking rain hit! It was a full on storm, pouring rain thunder and lightening and if you know Racer at all he thinks that thunder is the Dinosaurs. He's progressed in this area somewhat, last year I wasn't even allowed to leave the house if he heard thunder outside because he didn't want me to get eaten. Now living in Cali we don't get that much rain but when we do it tends to pour. And the thunder was really bad, every time he heard it he was running around whimpering I couldn't get him settled at all. He could see the lightening and freaked out, I really need to get him some blackout curtains for his room. Perhaps a mp3 player and some headphones, he really used to enjoy the rain its sad that its turned on him in this way.

Saturday, December 4, 2010

Its all fun and games till somebody stims

I consider Racer very lucky, he has never had many stims that are noticeable. His major one is finger ticking which he hides very well unless he's beyond a certain point. He's never flapped his arms or stared at ceiling fans for hours. But recently that has all changed, I've heard bird calls of the squawking  variety, he's rocking at times and the screams oh god the screams.

I've started to crave the night hours and school hours and dread weekends. And of course when Racer is squawking Pigpen thinks its funny and joins in and then I have two lil loud birds. (my kingdom for headphones like YM daddy)

So what to do?? Me and YM daddy have been racking our brains trying to figure it out. Perhaps the 5 day weekend from hell? The change in the sleeping routine because of YM daddys new radio show? Or is it what I've always said and its Racers school?

So as I sit here and eat brownies and think about how its suddenly taken a turn for well maybe not the worst but it surely isn't better. I wonder how we will figure out how to solve this problem. (I'm still here btw eating brownies and not blogging)

But here is my theory I know stims are like his body's way of dealing with things. Things I know I have tried to prevent. The over sensory issues to lights and sounds and water. But with 7 YuckMouths that can sometimes be hard to do. I know all my kids have their limits but Racer reaches his sooner then the rest of them. I have talked to the YM teens about helping out more to prevent these overstimulated times, like between 6pm and bedtime. It never fails that 6pm rolls around and I hear the screams of Racer or the bird calls. And since I can't very well lock the rest of the YM's away we all have to learn how to deal with Racer and one another. Loud or not we have to figure out what went wrong and when. Hoping maybe that the stims will lessen and go away, maybe new ones will appear and maybe they won't. But in the long run I guess it could always be worse.

So here it is 11pm, its finally quiet I can hear myself think again and that darn tray of brownies is laughing at me. And I have to remember that "After all tomorrow is another day" ( I love Gone With The Wind)

Thursday, December 2, 2010

Potty Training

So per the request for a feeling of not being a freak I decided I would reach back into my bag of horror stories and blog about potty training Racer. Its actually not that far back because he's only been trained for less then a here we go.

Being the mother of seven, and having previously potty trained four kids already I knew that there would be some issues in training him but never at the age of 3 did I think it would take two and a half years to finally get to where we are today.

For the longest time the issues that we're blocking him the most was his lack of speech, and his water sensory issues. At three we had to sponge bathe him, we had bags and bags of baby wipes for his hands and face. When his speech finally caught on, we then had to face that he was still very much on the baby side of brain function. I think that was the hardest part of it all. I adored his Special Ed preschool teacher but she was very blunt and honest that she didn't think he was aware of the need to use the toilet and that he was still very much a baby and it would probably be another year before we should even attempt it. So we waited, we tried pull up but his skin couldn't handle those. We tried no diapers and just underwear and that didn't work either. I read everything I possible could on every autism website about potty training a special needs child and none of that worked either.

Then we moved, we changed schools and everything that I had been trying got put on hold. Now here we are at age four to four and a half. The new school was less then half day and the class they put him in was for severely autistic kids. He seemed to be doing well when he was there but seemed to release all his stims when he got home. I got glowing notes of him using the restroom, he was training for them but not for me. What I came to find out was that at 7:30am when he was there for three hours of course he was dry and of course he would sit on the toilet for them. But that didn't equal trained in my eyes because when he was at home he would still wet the diaper.

Then summer hit and he wasn't going to a summer program and he would then be going to kinder in Sept and I freaked. I knew that he needed to be trained but nothing was working. I wrestle with myself at night, feeling like a horrible parent, wondering who the heck has this much trouble after two years of trying. All the articles I read made it seems so simple, and when you are this low you start to question your parenting skills lol I was a mess and Racer wasn't trained. Then I woke up one morning and I was faced with three poopy diapers to change, Racers and the two baby girl YM's and I screamed at no one in particular ENOUGH!. I counted back to realize that I have been collectively changing diapers for 13yrs and if I didn't get Racer trained he never would be.

Now I can't tell you what changed or what was going through his head or even mine but Racer started peeing in the toilet! Then he was pooping! It was amazing that here after all these years he gets trained and I didn't really do anything other then get fed up with diapers.

lol but now that he's trained we are dealing with a whole other set of issues...but that my bloggers is for another time!


Autism won today......not a choice I made freely. Its been a bad week of no sleep and sick YuckMouths, even Daddy YM got sick. (btw my bathroom still smells of puke!) I feel defeated, tired and restless. Lots of things that still need to be done but I'm ready to give up....but I won't, I can't. Because even though I feel this way there are eight people still counting on mommy to get them thru the day. And Racer will still wake up in the morning bugging for a breakfast he won't eat and cartoons till its time to scream about school. In the grand scheme of things I can't complain much, and mostly I don't but maybe that's my downfall. I don't cry out for help when I should. I take to much on when I already have a full plate. But so is the life of the mommy, we are the know all be all end all of everything.

Today on my twitter I was lucky enough to laugh and share with some very good twitter friends of mine. But I've noticed that I have more e-friends then I do IRL friends....but don't cry for me lol. Its my own fault, I tend to shy away from normal people and their normal kids in their normal lives. Its sad in a way, the other day I attempted to talk to another mom since her kid was in the same class as Racer and I was at a loss for words. I mean what do you say? "hi my name is _____ lets be friends, but don't freak out when my son starts squawking  like a seagull or he screams like a scared little girl." lol all those thoughts run through my head and I turn into a deer caught in the headlights. And do that smile and nod at how cute our kids are being as they run to class. I scan the crowds of parents looking for the other ones that look like I feel, but their are none. So I come home jump on my twitter and find company with the e-friends that I have bonded with, the ones that have the links I need the laughs I crave and the understanding that I so need. Without them I think I would have lost my mind by now.

But I have to credit one person who for the last few years has kept my head above water on those most horrible days. And that is my dear friend Nidia, though she may never read this, she has gone from e-friend to IRL friend. She deals with the same issues and treads the same murky waters I do. And for her I am truly grateful there are lots I couldn't have done without her. There is also YM daddy but he knows more then anything that I am truly grateful that he is around and a world where most dads don't get involved he is there every step of the way and I love him for that!. (P.S my bathroom still smells)

Wednesday, December 1, 2010

YuckMouth Baths

Bath time at the YuckMouth word HELL. Not only do I feel like I have a river of water at the end of the night but I need fishing boots when its done to wade through the water that has collected in the bathroom. But its the youngest YM's bath that I hate most of all. The struggle, the screaming, the crying all of it is just to much some times. I think I want a carwash and just run the kids thru all that.....perhaps throw bubble bath in the pool?

Racer still won't come in the bathroom while the water is running in the tub and once in wants to only play but now that its colder we can't just have playtime its strictly wash and rinse. Then I have his youngest sister who will scream and cry and flop out of the tub like a wet seal only because older brother has a hard time with baths.

I guess it could be worse....we used to have to sponge bathe Racer, he wouldn't get anywhere in or near a tub. We were lucky to just get him in the bathroom let alone naked. Issues across the board with water. So here I sit soaking wet...writing this blog before I get the ever loving forgetful block I get.

Writers Block or Being a Mommy?

I've had a bit of writers block lately. Perhaps overstressed by the impending holidays, Racers IEP's and then IPP's frm Regional. To top all that off having 6 other kids with all their individual needs needing to be met. lol and lets not forget my all important loving boyfriend. At the end of the week I don;t know how I've managed to survive and get it all done. 14yrs running and no one has been forgotten or lost lol keep your fingers crossed *knock on wood*
I've had many ideas about what to write as I walk Racer to school, its just me and him and we talk about the clouds or various birds that we encounter, the couple who play their club music to loud and Racer has to stop and dance to. He tells me he likes to dance before he goes to school. And while walking I think of all the things I want to write about for him. I think about his future, what will he be, where will he have gone? What becomes of him as a grown adult? lol and this is only a 20 minute walk but its deep thinking and its quiet something I get to little of sometimes.
So after my quiet 20 minute walk I jump on the computer and sit in front of the blank screen before me and its gone. So this page has been bugging me for a while because its Firefox and it saves my tabs so the tab mocks me. I figure I have good excuses, because who has time to blog? I have kids and a boyfriend and autism to deal with lol, just writing that makes me tired. But I have things to say, some that maybe other people should hear and others to get off my chest. Because at the end of the day when I'm tired and my boyfriend is tired of hearing about autism, blogging is the best way to get it out. To scream, to cry to release all the pain and anger and frustration of the day, week, month. But what to write? I have blogs about making friends, IEP's, depression all the usual stuff, but where to start?

But here I am writing about nothing, and everything at the same time. Because at the end of the day I'm just me.... a mother of 7, a loving girlfriend, a daughter and a sister.