Monday, September 10, 2012

The Graduation Speech I Would Have Made If I Wasn't a Cry Baby!


Our second daughter graduated at the end of this past school year... we went through the college application process, the waiting for acceptance, the financial aid process... more waiting and then all the planning and nerves and fears and so on.   Our summer was so insanely busy we never had her official graduation ceremony and party as we did for our older girl four years ago.   We finally held her party this past weekend.  This time I opted for a short "Thank you for coming to share this day with us, thank you for supporting us through this process... here's our graduate” mostly because I am a big cry baby.   For many reasons it was both easier and harder this time so I didn't trust myself to make it through more than a few words.  

So here's the speech I wish I had been brave enough to utter: 

Today marks the beginning of a new chapter in our family's life... today my favorite child graduates and leaves me.    She is not my favorite because she's the best, prettiest, brightest, most helpful or any or all of those things.   She's my favorite because all other positions were taken.   Her older sister, Sarah, is my oldest, my first, and my "experimental" child who endured many parenting mistakes made by her parents but turned out awesome anyway.   Her younger sister, Ainsley, holds the distinction of being the baby girl... she will always be the youngest girl... my baby girl who has many special qualities that will keep her my baby girl forever.   Her brother, Jack, is the only boy, the baby of the whole lot of them!  So that leaves most favorite kid as Anna's job.   
Anna has spent half of her life volunteering on a regular basis in a variety of worthy organizations, she’s worked since age 11 with Horse and Buddy, being a huge part of a great organization, putting many, many hours in helping make the lives of children with special needs brighter and healthier.   She has had some amazing mentors during her years in that organization,  Sharee Liles, Janet Mason, Sue Walker, Holly Confroy, Laurie Pate and many others over the years.   She's learned, she's grown, and she’s become strong and independent.    Anna has also spent many hours this past year and a half working at Orange Co Animal Services and been so fortunate to have amazing mentors there as well, Sarah Fallin, Evelyn Lilley, Anne Clancy, Hannah Barber, April Bolton, Ashley Ray, Jess Allison, Helen Wemmenhove and many others.   There cannot be enough said about the importance of incredible mentors and role models in the lives of our children.   Adults that teach, set amazing examples of hard work and intense dedication to the good of others and will love your child during the process.   Thank you to all these amazing people that made this journey a lot more secure.   Thank you to all those involved with these organizations that I did not name by name... there are too many to list!  
Anna has found the perfect college... if there weren't signs saying it had been around since the 1800's I would swear it were built just last year just for her.   Who knew there was a college that not only has a farm but values service and hard work just as much as academics?   A college that believes learning looks different for different people and embraces those differences in a whole-hearted way. Warren Wilson College has embraced her and celebrated her commitment to the greater good by awarding her two amazing scholarships that will enable her to study there without worrying about the cost.  Anna has been awarded the Sutton Scholarship and the Warren Wilson College Grant.   
Now my advice to the graduate: 
You know who you are, probably more intensely than is healthy!  Do not lose your self in the masses of other people around you.   Remember what you value and hold those close...but not so closely that you miss new and unique opportunities to explore other things.    Listen more than you speak, you have two ears and one mouth and I believe that design was not random.   Listen to those around you and hear what they are really saying because it's not always the words leaving their mouths!  Love those that need it more than others but aren't always easy to love.   Be the soft place to fall for your friends and in other relationships in your life.   Sometimes people need a hug more than advice so make sure you are paying attention and give the best thing for them at the time.    Open yourself up to other relationships.   Life is full of amazing people; get to know as many people as possible.   This is such an exciting time in your life don't close yourself off to new people by holding on too hard to the ones already there.   Your time-tested friends are not going to go anywhere and they hold you just as tight even separated by distance as before.   
Be present; take advantage of learning as many new things as possible.   Put away the things in life that distract you and really BE in the moment.   Learn something new every day.   Embrace every new thing even if it scares you, annoys you or confounds you.    Be nice to yourself, find time for a cup of tea, some yoga, a walk, and a swim, sitting in meadows or petting an animal.   Do what feeds your soul.   You are an amazing young woman, a fierce bright soul that will set the world on fire on day.  In the meantime be patient and enjoy being young, enjoy not having it all figured out, enjoy the sunrise and sunset and appreciate that nothing is promised to us.   
Most of all know how much your family loves you; know that there is NOTHING we wouldn't do for you to help you succeed.   You will be missed at home but this is your time to grow, learn and be free and young.   You will leave the world a better place that we know for sure.    Go out and change the world... we all know you can and will.   

We love you Anna banana... you are my heart and soul!  Congratulations on your graduation!  


Monday, April 2, 2012

Autism Awareness Month






It's April so it's Autism Awareness Month. What I wouldn't give to be a person who only has to be aware of autism one month a year!! How wonderful it would be (or would it?) to not be the parent of, the sibling of, the family member of, the friend of , the neighbor of, the church friend of, the schoolmate of a person with autism? To not dwell in the trenches with this perverse condition that makes the world seem upside down so much of the time?

When I think about how dull my life would be without autism I am repelled and intrigued... autism has brought great things and people into my life while bringing some pretty awful things along for the ride. My child is "high functioning" for whatever THAT means but it still means that day to day our lives can be difficult. There are things that on a good day just make my child quirky while on a bad day that same thing can make life downright unbearable for us all. I can't imagine how it feels to be trapped inside of the loud, overwhelming arena that is autism. Though the family lives with it we can always take 2 seconds break for our selves while the person living with autism is always there in it and can not escape.

My son is also considered to have autism spectrum behaviors with a diagnosis of Sensory Integration Dysfunction, Dyspraxia, ADHA, and learning disabilities in reading and memory. His "package" is so different though there are days just as difficult as he struggles to connect his intelligence with his difficulty with output. We worry less about his future as his difficulties are less severe and less impacting of his day to day life but we worry all the same. We worry that his difficulty with reading will paint him as unintelligent. That his frustration with the world as an unpredictable place will send a message that he is difficult. His progress can be excruciatingly slow at times and then leap ahead in an unpredictable manner.

Recently the new figures came out from the CDC.. autism rates are now 1 in 88. ONE in EIGHTY-EIGHT!!!! I am so alarmed at these figures! It terrifies me because it makes me KNOW for sure that statistically we will have more family members with autism in our future. This is NOT a club for which I desire more members! Autism is so complex and so different for every person affected so having one person in your life with autism does not better prepare you for another! I tell people all the time "if you know one person with autism you know ONE person with autism!" We can't pretend for one second that we will ever know exactly what to do for our family member.

After almost 17 years (how ironic that my child with autism was born in April? She's always liked things orderly!) I have days when I feel like I know nothing about autism. Days that are so excruciating to survive that I wonder how I will do it when I am 60, 70 , 80 yrs old, when I am old and frail and she is still young and robust? Then I have days when there are good things due to her autism that keep us entertained and encouraged! Ainsley has amazing talents and devastating deficits. I wonder daily what really goes on inside her brain, what is she thinking, what could she tell me if only she could organize her thoughts and tell me verbally all that is there. Though she is verbal she has great difficulty explaining her thoughts and feelings. We are working on communication methods that may allow her to tell us one day all that she feels and thinks but progress is slow.

Our state is working on making cuts that will limit services to our most vulnerable citizens and I have to ask myself why we can ever think this is ok? Why do we support every other disadvantaged group but so easily turn our back on our disabled citizens? Our system is supposed to be designed to allow every citizen the ability to live and work in their own community and contribute yet the current cuts will send many of these individuals into institutions when the families become exhausted mentally, physically and financially. I wish I had all the words to explain how wrong it is to limit a person's potential because of a label and "lack of funds" all the while watching the enormous amounts of money being spent on things so frivolous you can't even fathom the absurdity.

So Happy Autism Month ... I think.

What is Autism? (from the National Institute of Neurological Disorders and Stroke)
Autism Spectrum disorder (ASD) is a range of complex neurodevelopmental disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotypical patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger Syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.

Thursday, March 29, 2012

"You should have a blog or write a book"





Well actually I DO have a blog... see right here.... no HERE! But as you can see I am notoriously sporadic in my blogging. Sometimes when I would most like to blog I am indignant about something and when I am in that state... well sometimes it's just not pretty! I tend to be more honest than most people can handle and that isn't always a good thing. Sometimes the truth is less important than the relationship. I know I am right so I don't always have to rub the other person's nose in my "rightness". Ok well there are some people I would like to SMOTHER in my rightness but those aren't the ones that I care about the relationship enough to squelch my "rightness".

You are going to have a random sampling of life as we know it right now because tonight this is about posting something and I won't promise any of my thoughts will be coherent or cohesive just here and real. I have found in my writing that sometimes you just have to write...the content can be fluff or meaningful but the more you write the more the habit returns and eventually my faithful readers (all 3 of you!) will get something worthwhile to read.

We are approaching another graduation and you guys remember how that went the last time... the sobbing, the gnashing of teeth, the agony... you will be happy to know James has promised to be braver this time! My Anna Claire, my Anna Banana is approaching the end of her homeschooling days and will be off to college in the fall. She has been accepted to Warren Wilson College which is THE coolest place on the planet. As Sarah remarked after reading their brochure, "This is SO cool, it's like SUMMER camp!" www.warren-wilson.edu

Soon I will be searching for music and pictures, ordering a diploma, cap and gown, booking a hall for the graduation ceremony/party. This is a new season for me as I am not ashamed to admit Anna is my favorite. My other children know that and often juggle for position on the rare occasion that Anna falls from favor. It usually doesn't last long but they get a brief stint as favorite until she dethrones them and resumes her post. I won't get all sappy because I have many months ahead to do that with all the details of the impending graduation and her leaving me for college.

So for now I am back and I will try hard to make this a worth way to spend a few moments in your day!

Monday, July 25, 2011

Every One is Someone's Child


It seems that in the media spotlight there are always public figures behaving badly, Hollywood superstars partying too hard, Rockstars found dead or near death due to drug overdoses etc while in the smaller print are our local folks sometimes doing all those same things. It's easy to judge, it's easy to say "THAT would never happen to ME" , "No one in MY family would ever do THAT" but really is it our place to judge?

Amy Winehouse was found dead this week... guesses are she is probably dead from a drug overdose or likely some related cause to her well known drug and alcohol problems. While it's hardly surprising that she has succumbed to her addiction is it really our place to judge? Is it really our job to decide she "DESERVED" such an end?? I have seen some pretty ugly comments about her just as we see any time someone in the public eye dies of such a tragic cause. Our first reaction is that somehow the addict had it coming; they made a choice to put a harmful substance in their bodies to excess. Addiction is a disease, a PHYSICAL compulsion for THE thing that we can no longer handle alone. The saddest part of addiction (in my opinion) is that often the behaviors that accompany the worsening addiction often alienate the very support system that a person needs to overcome the disease.

Fifteen or so years ago Kurt Cobain was found dead of an apparent suicide. His drug and alcohol addiction was also well documented. I remember thinking as I looked at my very young children that the worst outcome of his death could be for him to be made into some sort of folk hero. I didn't want his death to be so romanticized that other young people would want to emulate his life and even worse his death. Many years later my second daughter, Anna, is fascinated with Kurt Cobain but fortunately not in a way that makes me fearful. She feels cheated, sad and angry that he squandered his talent and died too soon. She feels angry that the world pulled at him so much, everyone wanting a small piece of him until he felt there was nothing left for himself. She feels sadness that his daughter is growing up without her Dad, and with a Mother who is drug addicted and therefore unavailable to her.

I have people in my extended family that have struggled with alcoholism, with drug addiction, with other addictions to harmful substances and behaviors. Some found ways out, some died of their addictions, and some are forever changed by their disease. I made a comment this week on a friend's Facebook page that I felt that most of us are addicted to something. Some of us are "lucky" that our addictions are more socially acceptable such as food, money, attention. Some of us may even feel arrogant about our addiction and that it doesn't hurt anyone. Addiction is a disease that causes the sufferer to put "THE" substance ahead of everything else, they are driven to that one thing to the exclusion of everything else, they don't care how much it hurts other people because for however short the time they feel better, they feel in control and the world is ok. In the light of day they may see how destructive their illness is and they may ask for help. They may even ask for help over and over and over and still not make it out of their disease. They may lie, cheat, steal and hurt other people to gain access to "THE" substance. I had one family member on the occasion of another's death from addiction assure me he was OK... that he wasn't using and had cleaned up his act. He was dead just a short time later from the same disease.

All of these people are someone's children. Heaven help us all if we can't truly be sorry for another person's child's death!! They were all once tiny babies at their momma's breast, their tiny hands held on to Daddy's as he helped them take their first steps and all the other things that children do during the course of growing up. NOTHING makes them less their parents' children. I pray that none of my children struggle with addiction. I pray that if they do that I am able to find them the right treatment and support. I pray I never receive a phone call as Amy Winehouse's parents did this week to tell me my child is gone. I pray that the world might be a little more kind when such a tragedy occurs. I can only imagine the agony these parents have endured for many years and how much I am sure they wanted to help their child. According to reports she tried treatment many times so it's clear (to me at least) that she wanted help and wanted to win her freedom from her addiction. I am not sure I understand the feeling that whenever something tragic happens that we must assign blame. We are all human, we all fail each other in some way. We could all stand to be a little kinder along the way!

Friday, February 11, 2011

Don't Kick the Happy Mom!




Please bear with me as I climb back in the saddle here... for some reason lately I haven't been able to get my blog on! I have come here many times full of angst and thinking I will write something new but finding sometimes it's too personal or it would be too hurtful for specific people to read whether it was really about them or cuts so close to their situation but still this isn't about pointing the finger! My Mother has always said "be careful pointing your finger because you still have 4 pointing back at you" My Momma's wise that way!

Anyway the current bee in my bonnet is in regards to how parents of special needs children sometimes bicker among themselves about their children. I see this happen more often on email lists because I think when you aren't looking into someone's eyes you can't really know what they mean and feel when they say something. You also can't see how much you have hurt them when you are careless or unnecessarily cruel in your posts.

I have a group of friends who I have written about before my "autism moms" or "sistamommychicks" as we call ourselves. We look into each other's eyes on a semi frequent basis and I think we are all very real about our kids... we aren't in denial and none of us are wallowers(spell check tells me that isn't a work but spell check needs to hang out with some folks I know and they would add it right in!). We are very real about our kids... real about our frustration, real about our heartbreak, real about the potential that our kids have that can be so hard to access, real about how most staffing agencies suck, real about how tired we are most days. We laugh together, cry together, grieve together... whatever comes we are in it together!

My child also has a genetic syndrome called 22Q or Velocardiofacial Syndrome or DiGeorge ( www.vcfsef.org has some great information for anyone interested in this syndrome and how it affects our kids) . At any rate we can't even decide what to call it and some will bicker about that too! It comes down to this black and white for me... call it monkey butt for all I care but my kid is missing a piece of her 22nd chromosome and it's not a good thing!

Recently there was a dogpile on a poor mom on the list who remarked that her child was "mild" and then gave documentation as to her using the term "mild". Alot of kids with 22Q have heart defects requiring complicated surgeries, immune issues requiring treatment and a limited way of life, cleft palates and lips, significant learning issues and mental retardation as well as a myriad of other medical complications with all kinds of body systems. Some of our kids aren't able to speak until surgical interventions take place and many years of speech therapy. There are LOTS of really scary things that can happen with our kids but at the same time some kids have very small issues. This lady was relating that she had great hope for her child and felt very blessed that he did not have heart issues, didn't have a cleft palate, his immune system was strong and so far (he's a preschooler) his development only lags a little bit behind his peers.
Imagine my surprise and I am SURE this lady's surprise when the next day there were about 20 emails saying she was in denial and unrealistic and there were probably all sorts of things wrong with her child she didn't know about because her doctor had to be incompetent to have not found anything wrong etc etc. Even a post that basically in a few years she would be rethinking that term "mild". WHOA! Really? Our kids are struggling, we are exhausted, we are heartbroken, we fight every day with the school, the world, medical institutions, governmental agencies etc etc and we are going to muster up energy to fight with EACH OTHER?? Bitter much?

I have encountered the mothers that are in serious denial about 22Q and about autism. The moms that tell you that even though their child has 22Q they will be the one child in the history of 22Q that doesn't have learning disabilities or any health issues. The moms that get an autism diagnosis when their child is 2 and pull out all the stops and chase every bit of snake oil they can find because their goal is to have their child normal by kindergarten. I have seen moms who have children that are so glaringly obviously on the autism spectrum but completely swear they see nothing amiss with their child (you know this same child that just licked the floor, opened all the kitchen cabinets in someone else's kitchen, spent 5 minutes spinning in the middle of a group of kids, takes direction nor correction from anyone, is unsuccessful in every social situation and has not one single friend... yeah that kid!) I have SEEN denial people I know what it looks like.

At any rate... let's be honest here, there are no other mothers on the planet that can get it like we do. No one who hasn't walked in our shoes has the first clue what our lives are like. Can't we just use that same passion and energy to hold and comfort one another? Can't we just bite our tongues and not say the first thing that comes to mind? Can't we just give each other the benefit of the doubt and be kind? We deal with enough harsh realities every single day, do we really have to stomp out every bit of optimism other moms have? I personally NEED that optimism to get through the day. There are days when I think AWFUL things about how much easier life would be without autism and 22Q in my life (just for a second or two and if we are honest we all go to that dark place now and then!). I need my friend who has two boys with autism and is currently struggling mightily with one of them having behaviors that are making family life nigh impossible to say things like "Hmmm a coyote was spotted in my neighborhood... perhaps that would make a good therapy dog for J?" I need that sort of humor to get through the day!

So here it is... be kind to one another... I think a great man said that once... it's written in a major best seller at least!

Friday, October 1, 2010

A Confession

Ok here's my confession... I feel off the blog wagon! I was so committed to writing at least weekly and at one time even did it for a short time daily but life is sooooo busy!
I noticed it had been like a year since I last wrote! Lots has happened in that time! We have moved AGAIN... yeah I know Anna's boyfriend Oliver says if we move again he's staging an intervention!

We have returned to the farm in Chapel Hill that originally belonged to James' grandfather and where his mother grew up and where he spent most weekends of his youth. We have 13 acres here of wooded bliss... we are secluded and happy! The house is small but the outside is big so we are managing just fine!

We have had several vacations and other life events and perhaps I will put together a "recap" post soon but today I thought I would just write a short post and try to get my blog legs back!

Cheers!

Thursday, September 3, 2009

Homeschooling.... our style!












I have been meaning for some time to blog about our homeschool and never quite got to it....my focus has been parenting and the things I learn along the way from my kids but to neglect our homeschooling would be to neglect a big part of my parenting journey!

We are unschoolers.... yep there I said it out loud for all to hear! Not that it's a secret really it's just that as an unschooler you have to be careful where you use that term because it brings to mind some pretty unpleasant things for some folks. To tell you the truth even if you talk to a bunch of unschoolers you will get all sorts of definitions and even the occasional aspersions cast towards other unschoolers that aren't doing it "right"! I claim the term because it does trip off the tongue easier than eclectic, relaxed, classically based, child led, attachment parenting, collaborative schooling!

Let me try to explain what I "do". You see for some folks that "un" part trips them up... they think I lie abed all day watching the soaps and reading steamy romance novels while my children run a muck and in the end are only capable of flipping burgers at Burger King once they graduate! Ok now I know there might be people that are offended by that but not a one of my children has claimed as their aspirations to flip burgers at any burger joint so this would not be their dream job. If it was then I would make sure they were the best at burger flipping they could be! I do guide my children in their behavior and in their education, not in the whack them to keep them in line sort of guiding but in the constant discussion of their goals and my goals and the continual effort to synch at least some of them at some point in their development. I find that around early high school my kids arrive at a place of figuring how how they are going to get where they want to be as an adult. They usually initiate the material and how to make it all look like traditional courses that a college can understand when evaluating their readiness to be a student there.

I have always maintained a resource rich environment... this is not the same as "I have alot of stuff" (which I DO but there is a method to my madness and the AMOUNT is not the operative term here!) I make sure that there are lots of interesting items available for my kids to explore. I can spend as much money or as little money and still have the same well rounded environment if I am attentive to the quality of what I bring into my home. A $2000 microscope isn't superior to a $200 microscope or even NO microscope at all if it's not available in an interesting way. My kids love to play games so we have lots of games, my kids like self contained activities so we have lots of those around as well. I LOVE to make file folder games and all kinds of those things so we have tons of those. We have lots of books and manipulatives. My schoolroom albeit messy currently (still not sorted from the move!) is a cool and interesting place to hang out and explore.

This year I have purposed to be a little more "step ahead" than my kids because my son is now 8 and getting to an age when he really really wants to know about everything. He is frustrated that I can't make a cool science experiment appear from thin air instantly! To solve that frustration I have purchased the books "Science Experiments in a Bag" book 1 and 2 ... coordinating a swap currently so soon I will have at least 25 experiments at the ready for him! I have always used a loose interpretation of Sue Patrick's Workbox system where I have boxes filled with activities for the kids to access if and when they want to. I haven't been using the system in a while but have pulled it back out for the two youngest this year and they are really digging it!

I am including some pictures with this post.... I can't figure out how folks seem to get pictures up and labels to coordinate with them so you will just have to figure out what I am talking about... at any rate Ainsley has a folder system where she can clearly see what each activity consists of and when it's finished. Jack's system is more straight forward with bins he can see what's in there and what's required to do the activity and so forth. I have also been making lots of the Evan Moor hanging centers so enjoy those pictures as well!

So anyway for our family the whole unschooling thing is having a prepared environment that respects that children learn every minute of every day and allows their interests to run their course in their time frame. So here ya go... a glimpse into our day!