. With Love, From The Mother 'Hood: February 2010

Thursday, February 25, 2010

What I Know for Sure

"Cocoon" by Max, age 7

Here we go again.... Phone calls made, Early Intervention (EI) has done their intake interview (for the second time - Sam didn't qualify the first go 'round last year, because there wasn't enough of a delay) and now we are set up for another in-home Speech/Development evaluation in April. I am not freaking out over this - probably because I have been through it all before and it was so much worse with Max - we couldn't leave our house at this age with him (well, we could, but I often chose not to because of how difficult it all was - see previous blogs about that one - there is a reason I jokingly refer to him as "Linda Blair" in my writing), and because I have had suspicions that something was up for a long time with Sam, so it isn't as if I was blindsided. There are still hard days with Max, and although right now I don't know if we are looking at the dreaded "A" word with the baby, it is a strong possibility and at the very least we are looking at a speech delay (most of his communication is signing right now). Siblings of kids on the autism spectrum, as well as boys, have a higher chance of being diagnosed, so Sam has two checks against him. Add in the fact that two of our other children are diagnosed AD/HD and it is a no-brainer he will likely end up diagnosed with something. There have been some "soft" signs here and there, and some things are not on an autism checklist,.... things that make you go hmmmmm.....maybe.... - parents who have been through this know what I mean - later milestones, odd behaviors like staring at lights and windows, the sometimes blank stare, the way he has always done this thing with his thumb on my arm, or the newest - crawling on the floor with his head pressed to the ground (Max used to do this, too), and some signs that are harder to ignore - like his loss of the few words he had, and the fact that at 18 months he has no solid words, and usually only attempts words when I prompt him. This isn't meant to be a woe is me piece - There are things much worse than autism in this world (believe me, I am not saying it doesn't suck or make me sad to think of my baby boy being diagnosed, just that there are far more horrible things we could be dealing with), and I try to remind myself of that when I start feeling overwhelmed. The hubs often says to me, "This shouldn't be so hard", referring to all the shtuff with the kiddos - AD/HD, Autism, delays, depression, other health issues, and the piles of paperwork that comes with it all..... and he is right - it shouldn't be this hard - no couple sets out to have children thinking about these things, anticipating children who come with more paper work than a major corporation, but it is what it is, and our life is what we choose to make of it. We try to make it light and fun whenever possible and Marc is great at making me laugh (the zoloft doesn't hurt either).

To add to the fun, we recently adopted "Sushi", a Siamese/Snowshoe mix kitten into our family - A "Sweet Sixteen" gift to our oldest (hey, she has been asking for one for months and it was waaayyy cheaper than a car). Sushi is another strong personality, alternately affectionate and feisty (she fits right in with this crowd). In the past, we have not had good luck with cats - I have owned three others in my adult life, two of them with the hubs; the first two were pure evil and the third turned nasty when we moved to this house. Sushi, so far, is a love bug chatter box that acts part cat, part dog and part baby - she stands on her hind legs to get my attention, comes when I call her, follows me, tells me when she wants food, likes being held on her back and right now is snuggled on my chest as I write. The ultimate test - which she passes every time with flying colors - she doesn't make a peep when the baby grabs her and carries her around like a rag doll. This is a good cat. I know some think "Are you crazy?", adding to the chaos that is our life, but I always say it is a "good crazy". We are adding a puppy to the mix in a few weeks as well - I was hoping for a Boston Terrier, then was leaning towards a Pug after meeting my neighbor's sweet trio outside with our kids. They are a "sturdy breed" and "Good family dogs" from what I have read. "Sturdy" fits the bill in this household, but the hubs wasn't thrilled with the idea of a snorty, smushed face pooch (he gets major points because he would have let me get one anyway) and I want us both to be happy with our choice. We found an ad for West Highland White Terrier puppies, and he was a goner - he had one growing up, and after meeting the sweet mama of our puppy, I was hooked too. Names are still floating around for our little puppy girl (Lily and Sidney are at the top of our list) but I bet she will fit right in no matter her name along with "Swimmy, a.k.a. Lucky Bob" the fish that begs for food like a dog, "Patches O'Hoolihan" the hamster, "Stell-A!" the 10 year old golden retriever that thinks she is still a puppy, and "Sushi" the cat that isn't sure if she is cat, dog or baby.

So, here is what I know for sure - I love my life, and as hard as it all is I know the struggles my children bring to it have made me a better mom and person. AD/HD and Autism don't define my kids - my kids are each a tiny, different definition of what these challenges can look like, and it is only one small part of who they are as people. I have tried to stop asking "Why?" and try to ask "How?" - "How can I bring about positive change and make a difference?" Raising awareness and educating others is one thing I strive to do - Hopefully this blog is one small step in that direction as I share our view of life with autism . This life isn't always what we envisioned all those years ago before five kids, but from where I am sitting, it looks pretty good and I think I am exactly where I am supposed to be. I want to leave you with a link to a piece by Cammie McGovern called " A Different Kind of Happy Ending"

Thursday, February 18, 2010

Gandhi, Life, FISH and Barns

Photo by me

"Be the change you wish to see in the world." - Gandhi

Such a great quote - and what I have been striving to do - at least within my little corner of the world. On the surface, a seemingly simple task - I mean, it isn't like I am going after world domination, but at times it feels like it. Lately it means managing my children's atypical needs and advocating for the Free Appropriate Public Education (FAPE)* they are entitled to, and hopefully pushing for some positive changes within our district for all children in the process. Managing their needs and education can eat up A LOT of time and energy - and the blog took a back seat for awhile. So, the answer is "Yes, I am still writing the blog", even though after two months of no posts I am sure it doesn't seem that way. Ironically, this quote was included in an email from an educator; a person who doesn't seem to live by it, at least in the capacity of "teacher". We are on the same page now after I used that magic word, "appropriate", in an email reminding her of the education plan in place for my child. I have also had the opportunity to help two other moms advocate for their children, and while I am grateful for the path my life has taken, I am saddened by the necessity of this advocacy. In regards to their education, my children come with more paperwork than some corporations. I often wonder what it is like to just send a child off to school, minus the meetings, forms, evaluations, management and worry that comes with it all.

I haven't written a single word since December unless you count the paperwork, and I prefer not to. Seems I've had a bit of stress induced writer's block - when it rains, it pours, and it seems to have been raining for awhile here (not going into the details, just major stress going on concerning health of much loved extended family). There are some huge rainbows in all of this, though. I am anxiously awaiting the arrival of my first nephew this weekend - nothing more beautiful in life than a newborn baby. My short story submitted to FISH Publishing has been "longlisted" this week, which means it has survived the first cut from 1800+ down to 350-450 stories. There will be a party if it is shortlisted (even if it is just me dancing in my kitchen to 80's music, drinking pinot noir), and a major celebration if it is published. Honestly, I am thrilled that it was deemed fit to be longlisted. I've learned to take what I can get, and enjoy it - although right now is a bit of a roller coaster ride, with such polar opposite events happening all at once.

Even with all of the current stress, Marc and I are in a good place, and in celebration of our 11th wedding anniversary, we purchased some work from a local artist, "The Barn Lady" (check out her work at http://www.barnlady.net/). We bought a BIG giclee titled "Perfect" as our gift to each other and my sweet husband bought me one of her smaller original oils for Valentine's Day. I also had the pleasure of meeting her at a gallery opening, and talking about a barn near my house, promising her some pictures. She liked them, a lot actually (her response made my week), and I am hoping she paints it; Marc maybe not so much after I told him "If she paints it, we will have to buy it!" - only because of our recent purchases, not because he doesn't love her work. I may show some of my photos in the CCAA Gallery at her encouragement. I also geared myself up last weekend to start some paintings of the barn and a pastel of a goat named "Angus" - he has the most beautiful horns.

I know I make some people scratch their heads, and suspect I always have - the difference is I am comfortable in my skin now. My passion for art has been reignited, the long ago art major emerging from her hiding place. If you happen to see a woman running along a country road with her camera near a barn, racing the waning light, wearing knee high garden boots (for wading through the snow) and a fluorescent orange hat (to avoid being hit by a car), this is happily me. A woman driving by was clearly laughing at me in my getup as I took my photos, and I thought, Laugh away. I am leaving my stamp on the world, and in my mind it is beautiful, fluorescent orange hat and all.

*For more information on advocating for appropriate education please go to http://www.wrightslaw.com/ or the book, Wright's Law, From Emotions to Advocacy.