Wednesday, November 24, 2010

Thanksgiving Re-run..

    last week marked my two year "blogoversary"..I can't believe that I have actually kept it up for that long..I have made so many friends and connections in this little community of ours and I am thankful. ..and as tomorrow is Thanksgiving here in the states..I thought I'd share one of my earlier posts..Happy Thanksgiving to everyone-no matter where you are..I am thankful for you..

That which does not kill me makes me thankful 

~"You only live once, but if you do it right, once is enough."~Mae West

" Girls! Leave the table cloth on the it is NOT a cape!"

"put it on the table..THE TABLE not your HEAD!"

"It's for Thanksgiving....Why? because it makes the table pretty..."

"No it is not a sheet! It is a Table Cloth...FOR THE TABLE!"

"THAT'S IT! If you touch it again, you won't have cookies UNTIL YOU ARE 47! "

Thus begins our Thanksgiving celebration. Like most families, we gather around the table to feast on Turkey and all the sides. The only exception being that our holiday feast includes frozen pizza. Frozen pizza, because that is one of the five things that my boys will eat, and they had already met their quota of peanut butter and jelly for the week.

Thanksgiving is often a time for family traditions. One of my children's favorite traditions is arguing over where they will sit. Actually, they do this at most meals. It just seems more festive on Thanksgiving being that there is a table cloth involved. My tradition is to ask everyone what they hope the next year will bring, and what they are thankful for. The answers from my kids vary from "I hope the next year brings toys", "I am thankful for toys" to "why is this sheet on the table? " and "I am thankful for this sheet". I try and set a good example by saying that I am thankful for my family, for having this wonderful feast and that I hope that the next year is as wonderful as this one has been. I am also secretly thankful that the table cloth is still on the table. 

This year we we did things differently. As per my oldest son Sammy's school assignment, we were to go around the table and give thanks for things we wouldn't normally be thankful about. For example, being thankful for a mortgage, because it meant we had a roof over our heads, or being thankful for homework because it meant that you were learning. Sammy turned to me and said "I'm thankful for you mama." and continued to eat his pizza. Now I could take that one of two ways...he either didn't understand the assignment or he equates me with the mortgage. My ego chose the former.

As I later pondered the idea of this assignment, I asked myself what am I truly thankful for? The obvious things of course, we have a house, a steady income, four unique children, three of which happen to have an asd. What would I normally not think to be thankful for? Should I be thankful for autism? It has shaped who we all are. How we behave, how we think. Wasn't it Nietzsche who said "That which does not kill you makes you stronger"?( Then again, Nietzsche wasn't a stay at home parent.) On one hand, how could I possibly be thankful for something that has at times caused my kids to have to work so hard, and on the other, that work has in part made them the incredible people that they are. From their struggle, we have all grown. I know that I am a better parent-a better person. I take little for granted, and I have much joy. For that, I give thanks.

That night, while I was tucking Sammy in, he once again said that he was thankful for me. I asked him why? He said "Mama, you help me to learn so I can grow up to be a good adult."and I thought, right back at you Sammy, right back at you. He did understand the assignment-it was me who got it wrong. Yet another thing to be thankful for.

And so another Thanksgiving has passed. There was a wonderful turkey, thought provoking conversation....and the table cloth stayed on the table. All in all, a great success- AND I still have a few weeks to figure out how to keep the GIRLS OFF OF THE CHRISTMAS TREE!

Saturday, November 20, 2010

Not going to "Never" land..

  ~"All you need in this life is ignorance and confidence, and then success is sure."~ Mark Twain

  I should have known...or at least suspected. If ever I wake up in the morning and I don't want coffee, something is wrong. Very wrong indeed.  The thing of it is...well, I didn't figure it out until I took the dogs  for their walk. When I was standing in the middle of my view of the entire neighborhood, in my oldest robe and a pair of Omar's pajama bottoms..then it hit me.. all of a sudden-I knew. I had caught the dreaded stomach bug from the kids....oh and it wasn't pretty.  There I was on hands and knees heaving the contents of my stomach for all the world looking like a lifetime alcoholic coming off of a bender..or a reality show star looking for publicity.  It was that bad. The dogs just stared at me. I don't know what the neighbors thought-but they haven't dropped off any brochures for rehab, so I should be o.k.

  I was in a bind.  Omar was gone for the next twelve hours, and I was on my own...alone with the herd.  Now, anyone who has kids KNOWS what that means. Parents don't get sick.  It is against the rules.  I even  think it's part of the Geneva convention-it just isn't allowed. Now I have been known from time to time for breaking rules...and they say that "necessity is the mother of invention" and it was necessary...I threw myself on my children's mercy. I was that sick-and there was no way I was going to be making snacks and lunch and more snacks and dinner.  It just wasn't happening. "Mama! Your Sick? "Yes..I have to lie down.." "Mama's sick..her belly is going bleeech" "Is your belly sick Mama?"..".....yes.."  "Mama,,are you going to get sick..are you going to throw up..Mama?..".."" "MAMA's BELLY IS GOING BLEEECH!!!" 
"Oh No Mama's going to throw up!!" "Mama's belly is sick!"  and on and on they went...I snuck upstairs sometime during this fascinating conversation and passed out. Oh, it isn't like I wasn't aware of them..they came upstairs every thirty two seconds or so to check on make sure that I was find out how long you put a "hot pocket" in the see if they could have a ask me if I was still sick..sigh..  No,I didn't abandon them...It is more like I left them to their own devices. Which can be a dangerous thing. But in this case- It wasn't.

  The next morning..I was feeling half way to normal as I made my way downstairs. There, I was met with four happy kids and a  kitchen that looked as if a tsunami had hit...there were dishes everywhere..wet towels and washcloths (Zoe had decided to clean every surface of the house-including windows and computer screens)  buckets and papers...a mess of epic proportions...AND  It was one of the most beautiful sights I have ever seen.
 "Mama! you're better!"  "We did your jobs for you Mama!" "I cleaned the table.."  "I made lunch for everyone!"  "I helped too!"   They were euphoric. So proud of themselves.  They had done it-gotten through a day without me. Made choices and decisions...they stood on their own...and while it might have made one of the biggest messes I have ever in my life cleaned up-it was also one of my greatest pleasures to clean it.  My kids took care of themselves and of me..and no one was maimed in the process!.  How cool is that?

  You know, I think back to the early days...especially with my boys.  How far they have come. . I am so thankful for the people involved in the diagnosis. Particularly Oscar's.  His early years were the toughest. We seemed to have more questions than answers...We didn't know if he would ever talk..or!  We didn't know.  We were given a lot of "maybe's" and for that I am very thankful.  Even though at the time it was frustrating-I wanted answers!  But "maybe" is hopeful(even if I didn't think so at the time).   I can't imagine being told "never"..what would that have done to us as parents?  More importantly-what would that have done to Oscar?  No, one of the most important lessons I have learned is to never say never. I don't know what the future holds for him..I try not to worry too much...sigh.. Worrying seems to be an essential part of parenting doesn't it?...My boy is only nine years old, and I see how very far he has come.. the past three years alone have been full of leaps and bounds..How could I possibly predict what he will or won't be able to do?  He counts on me. If I don't believe in him-how can he believe in himself?  Whatever happens-whatever the future won't be because we lived in "never" land.   Although I will say That I never will ignore my body again if it tells me it doesn't want coffee...and at the same time, I'll make sure I am wearing more than my pajamas to walk the dogs when it does...     

Thursday, November 18, 2010

1001 Tips For The Parents Of Autistic Girls

  I have been asked to give a book review as a part of the 1001 tips for the parents of autistic boys and girls blog tour. I chose to review "1001 Tips For The Parents of Autistic Girls" by Tony Lyons.  The reason being that my youngest Zoe, had only been formally diagnosed a few months ago. Before that, most of my knowledge about autism came from my experience with boys.  Zoe's diagnosis did not come as a surprise-we had suspected as much for a little over a year. Once we had had her screened, we knew it was just a matter of time. It was the time BEFORE  her screening that surprised me. We knew she had some "issues"..but hey, in our family, who doesn't? We just hadn't put the pieces together as she had presented so much differently than her brothers.  I felt a little foolish for not having seen the warning signs. There isn't a whole lot of research done on girls with autism, so I was happy to see a book written especially for them.

  In the introduction. Lyons expresses that there isn't much out there information wise for girls on the spectrum. He also states that this book is a compilation of information from many different sources.  That some of the "tips" may appear to contradict themselves. That knowing your child is key in deciding which tips might work for you.  He also recommends that you discuss ANY and ALL treatment with your child's physician. I think all of this is important to know BEFORE you dive into the book.  Otherwise, you will wind up confused.

 Some sections of the book are geared to older girls and circumstances that we are not yet dealing with. So I chose to focus on the areas that concern us now. Mainly diagnosis, education, and diet.

  I found "Diagnosis and Evaluation" (chapters 3 and 4)  to be quite informative.  Just speaking from my own experience-autism in girls can present very differently than it does in boys.  Early intervention and parent persistence is stressed in this section. For diagnosis, there are great tips on what to to if you think there is a problem, where to go, questions to ask, and symptoms you should look for. I did not agree with everything. For instance

 "PDD-NOS Does not meet sufficient criteria for diagnosis of autism or aspergers.  Frequently children are initially diagnosed with PDD-NOS and then move to autism" 

 Two of my children have a diagnosis of PDD-NOS, it is accepted by the state and school district as being part of the autism spectrum. They receive services because of this.  There has never been any indication that their diagnosis would change.We were told  that with early intervention they could continue to develop and grow.
They have and do.

  I think that "Education-Planning A Siege" (chapters 5-10) was by far the most useful and informative chapters of the book.   There are tips on how to approach a meeting, ideas on keeping log books and what to do if your child's needs are not being met. It also listed what your rights are as a parent-and your child's rights as a student.  I think that these chapters would be useful to ANY parent of a child who requires any special services. In other words-these chapters are for helpful for anyone navigating the waters of special education. I would however add my own special tip 

"When preparing for any educational meeting, it is wise not to experiment with your "personal touch" eyebrow shaper-as shaving off half of an eyebrow does not project the image of a capable parent." but that's just me...

  I was very disappointed in the way the book addresses "DIET" (chapter26) We have eating issues in our household. Texture, smell, color, all play a role in my children's eating habits. I would like information or tips on HOW to address these issues.  Instead, it appears that this chapter is mostly based on the assumption that autistic people have problems with malabsorption, food allergies and celiac disease. This is absolutely untrue.
While autistic people can and do have food allergies-just like everyone should NEVER be assumed that.they walk hand in hand. There were too many statements in this chapter and not enough tips. It is one thing to say "Remove such and such from their diet" or "It will take a few days for them to adjust" but to not explain HOW to do these things leaves a gaping hole. I would love suggestions on how to expand on my children's menu of five things without causing anxiety attacks.  I'd like to make it easy for the kids as well..

  In reviewing this book, I skimmed a lot of chapters, and focused mainly on the things that are pertinent to us now. I found some very good information.  I am sure that as my girl grows, I will be able to find some more useful tips to get us through things like puberty and high school. There is plenty of useful and good information to look for.

I have to say that I don't like the title of the book. When we were first going through diagnosis with my son nine years ago, I would have been happy for just ten good tips on what to do in certain situations. Tips to me are help, ideas, strategies for accomplishing something. This book in my opinion, offered more statements than tips. Yes, ideas are good-but you need follow through-HOW to implement the ideas would be a start. I thought the book lacked that.

 Would I recommend this book? Yes-but only to a parent that is not new to diagnosis. For even though the author warns of contradictions in the introduction-it is hard to remember that when reading the tips.  Some of the tips read as fact. If I didn't know what I do of autism,(and it is still very little after nine years) I might not use the book as recommended. Instead, I might accept everything as written and wind up very confused. For the rest of us, who have some experience with autism, I'd say it was worth reading.  There is something in it for everyone. You just have to look.
  For anyone interested in the boys book-Jen of "Autism the King and Eye" wrote a thorough post on it here.

Saturday, November 13, 2010

Ramblings of an overwhelmed mother who used to be a daughter....

"...All Cats are grey in in the dark"~John Heywood's  Book of Proverbs. (1546)

      You know I try and keep a positive attitude..try and find the good in every situation. We all have days when seemingly everything goes wrong..when no matter what you do-nothing goes according to plan .I have always thought that when life hands you lemons, you  make lemonade..or as T and L say- you get yourself  some tequila and salt and have yourself a party.  So I try-really I do.  But this past month or so..It just seems as though the weight of the world has been on my shoulders and no amount of tequila is going to help my spinning head.

  Anyone following me knows about my recent IEP woes..and my ongoing construction and my lack of a decent bathroom..Add to it-my car dying, my dogs getting fleas, Oscar discovering that bodily function jokes are a RIOT,  and all the kids getting a stomach bug- culminating with my daughter throwing up on my head-yes, my head! Let me tell you, it isn't a fashion statement I would recommend...All I wanted to do was jump back and yell "ick!ick! ick!" but I couldn't..because I'm the mom. I wanted to make her feel better..and really... what's a little vomit between family?..It was certainly a bonding moment-and I'm not talking about me and my daughter.  Sigh...sometimes it is hard to be the adult..sometimes I want to be a kid...sometimes I want MY mother...

  Last month marked the twenty third anniversary of my moms death.  She has been gone for half of my life...and yet her influence remains.  Sometimes I wonder what she would think of me now...of this life I have carved out for myself... She had a roaring sense of humor, but being a DEVOUT Irish Catholic, felt terribly guilty about it.   What would she think of my kids yelling out various words at the top of their lungs..usually having to do with the more private of the body parts?..My mother didn't have body parts..well with the exception of a chin up and ankles down.  Everything else was kept locked away somewhere...her closet I think. To her sex was for procreation NOT recreation.. She was an enigma.. an interesting mix of faith, intellect and humor..and I think she would have enjoyed what I have become.  I know she would have laughed to see me this way-her independent and strong willed daughter being brought low by fleas and inadequate plumbing. I think that she would have laughed with the kids..and would have put my current woes in perspective.   She would say "Stiff upper lip"... "Up Kerry!"..or some other odd thing, telling me to suck it up..move strong..  My mom was not fond of big emotion.  It's crazy, but there are times that I can still hear her voice in my head ... After all these years..she still guides me.  Which makes me wonder what kind of impact do I have with my own kids...what will they remember?  That's just plain scary..

  Will they look back and remember a woman who yelled too much, misplaced everything, and threatened them with showing up at school in her pajamas?  A woman who overcompensated for her sheltered upbringing by being so explicit in teaching "the facts of life"( along with charts, diagrams and song)s that we all wanted to just sink into the floor? Will they still hear my voice?  What will it say?.  It certainly won't be "keep a stiff upper lip"..What is a stiff upper lip anyway?  Has anyone ever tried to keep one? It is an odd thing to try to do..and still, I don't know how it helps...unless it is to take your mind off of things because you are concentrating on keeping your upper lip..well...stiff. But that is besides the point.  My mother was so neat..and I'm just so messy.  

    Last night, I was lying on my bed pondering the past few weeks... The car problem is fixed, the fleas are dead, the IEP's dealt with, construction almost complete and a bathroom is on the horizon. The herd is once again healthy!   Things are looking up as they always do. Sometimes though, I need to just take a moment to  let it all go. So there I was- relaxing...when I felt my cat on my legs. Now, this isn't unusual.. he likes to hang out with me-especially when the kids aren't around.  The thing is..he was moving around too much....and after a long day of holding kids(or rather being hung on by kids)-I wanted a little of my own space. So I looked down-about to tell him to move off of me...when I realized...he was humping my leg.  My cat was humping my leg...with reckless abandon!. EEK!   In my shock (and horror) forgetting that my children were awake and could hear everything..I yelled "Holy crap the cat is humping my leg!!" sigh... My children being who they are...well, I know it is only a matter of time before they repeat that....probably at some inopportune anywhere other than home...  I just hope it doesn't stick....that these aren't the words they remember me by..that it isn't one of the phrases they hear in their heads as adults....sigh...stiff upper lip...

Saturday, November 6, 2010

A room with no view...

                                   "It was the best of times, it was the worst of times......"
                             ~Charles Dickens~

  It has been a rough couple of weeks here at Chez Herd.  So many things happening all at once.... The good news is that we have made a huge dent in our (so far) five year house remodel. We have replaced all the interesting brown particle board paneling with fresh drywall in the entire upstairs AND plotted out the area for a new bathroom! Yes-it looks as if we are finally going to have a second bathroom put in. We have lived for so very long with only one.  One bathroom for six people-a few of which think that clogging the toilet is "all in a days work".... One bathroom that is at least fifty miles from the bedrooms-or at least it feels that way at three in the morning.. when one of the herd needs to use it and is too afraid to make the treacherous journey alone. Oh.. there is NOTHING quite like being startled awake by a face hovering two inches from yours and the words "My belly doesn't feel good" to get your legs moving in the middle of the night!   Sadly, because of the distance, I don't think that we have ever made it in time in all the years we have lived here...sigh...I'm thinking that it might be time to replace the carpet on the stairs.

  Our house was built before the popularity of indoor plumbing (or as I like to call it-The" Porcelain  Age") So, I'm guessing that the original owners of my house, not used to the luxury of an indoor "privy" had no idea of where to put a bathroom in. So either they were just used to the inconvenience of  "going" outdoors-or they were masochists-because they stuck it in the most inconvenient of places. The kitchen.  Yes, If I chose to, I could cook dinner and greet guests at the door all from the comfort of my shower...and NOTHING screams ambiance more than a soaking wet  naked child walking into the kitchen while you are cooking dinner..It can be quite the conversation starter.
" Why are you wet?"
"I'm not wet"
"You're soaking wet!!..and you're naked!! where are your clothes!!
"My clothes are wet."
"I kind of figured that..why are they wet?"
"I fell"
"What do you mean you fell??!!"
"I dropped my headband."
"What do you mean?"
"I dropped it in and I had to get it out"
" Where did you drop........oh."
  Although I don't expect conversations like the above to cease anytime will be nice to have them someplace other than in the kitchen.  So you have to understand my unbridled joy over this upcoming addition to our home.(yes, I probably need to get out more)

  Surprisingly, the herd doesn't seem to be affected by all of this chaos. They have been pretty excited to come home every day and see what work has been done.   There was a time not too long ago, when I couldn't even hang pictures on the wall without a total freak out(with torn pictures and shattered frames)-when any change to the home environment  involved intense negotiation- so this is huge progress .HUGE. No, the only really big issue that we are having during all this the misplacing of things. Or rather, MY misplacing of things.

  We have two of the nicest gentlemen (friends of ours) doing the work..every day they have hung Sheetrock..mudded the walls and sanded off plaster.  In fact, there is so much plaster dust that when you walk by, you wind up looking like an extra from the movie Scarface. The house is a total and absolute mess. So what do I do?  I worry that these friends of ours will think I'm a total failure at every day, before they arrive, I scurry to hide the piles of dirty laundry and other crap from sight.   Heaven forbid they think I keep an untidy house!  The problem is...well, I keep misplacing ALL of Omar's socks..our teaspoons...and fourteen chocolate chip cookies.  I know-it's weird...but there you have it. And no...the cookies weren't eaten...they were tucked away in a bag on the top of the fridge...the socks were in the laundry and the spoons in the drawer.Where they are..well, your guess is as good as mine..My hope is that there is a crazed person wandering my neighborhood..wearing thirty pairs of socks..playing the spoons and eating cookies.  My fear is that I stuck them somewhere like in one of the workers toolboxes and my secret will be found out...and the workmen will think that I am a crappy housekeeper! Oh the shame!  The shame!
sigh...I'm getting carried away...plaster dust can do that...

   I am cautiously optimistic that we may actually get a second bathroom in before Christmas-THIS year! We have been keeping very steady in this round of remodel..and I think we just might get it done...think...and hope. I'll let you know how it goes..And please, if you should see a strange person wandering around wearing thirty pairs of socks, playing the spoons and eating cookies...please send them my way.  Winter is coming and Omar needs his socks.                

Monday, November 1, 2010

Autistic people communicate

        To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others.
          ~Anthony Robbins~

   When my boys were younger, they were non verbal. They did not have words, and yet they communicated.  They did not have the internet, and yet they communicated. My children did not have cell phones or touchpads or keyboards, and yet they communicated. They have ALWAYS communicated.  I simply had to listen.

Today there is a call for a "communication shut down" in which people are staying off of the internet in order to raise awareness about autism-specifically non verbal autistic people. This is supposedly to teach non autistic people what it feels like to have no means of communication. I think that this is a mistake. I think that if you want to raise awareness about autism, you should listen to what autistic people are saying.  Autistic people communicate.  They always have.  People just need to learn how to listen.

So today, instead of shutting down-I'm going to open up.  Below is a list of autistic bloggers. I encourage everyone to go on over and read them..but more importantly, listen to what they are saying.
Autism Blogs Directory
Autistics speaking Day