. With Love, From The Mother 'Hood: 2010

Thursday, September 30, 2010

Thankful


Photo by Becky Coyle, www.rebeccacoyle.com


"Wait , Daddy!" You would think my 2 year-old son recited an epic poem or some other remarkable, historic piece if you saw my response to his two word command. Simple phrases like this, or "Hi, Mom!", elicit extremely happy responses from me: "Nice talking!", or "Good using your words!", and often to the Hubs, "Did you hear him?!". I am ecstatic to hear utterances that most parents of two year-olds take for granted. At this age developmentally, strangers should be able to understand him 50% of the time, and we just aren't there, yet.

The above picture was taken before I knew 100% that we were dealing with autism for the second time, but looking at it now, I know I was right to be concerned about the episodes of "zoning out" I witnessed, among other things. It is a beautiful photo (thank you, Becky!), but as his mom I see the "stare" and the open mouth that I now know is due to low tone (and maybe I am crazy, but I have noticed kiddos on the spectrum tend to have a certain "look" about their hands). I am fully aware that we are extremely fortunate, once again, to receive a diagnosis on the "high functioning" end of the spectrum. I also know if you talk to any parent dealing with autism spectrum disorder, regardless of severity, they will (if they are being honest) tell you that it sucks, BIG TIME. Multiply "BIG TIME" times number of kiddos diagnosed.... It doesn't do anything for me to pretend that everything is "fine" when it isn't - better to let the tears fall when and where they may (and hopefully allow them to wash away some of the stuff that mucks up my life, although I hate crying in front of others).

Since hearing the second "A" word diagnosis, I have seen expectant moms everywhere, their bodies and minds full of the future, and I long to turn back time. It isn't that I want more kids, but rather to return to an innocence that is long gone; to feel for just one more moment the weight of life safe within myself before it is altered by terms like autism and AD/HD. I ache for those first moments, holding my newborn child and falling in love as if we are the only two beings in the world. Don't get me wrong, I love my children (their shtuff and all) more than anything in this world, and honestly can say I would die for them (ask anyone who really knows me - "Mama Bear" is what comes to their mind), but there are times that being their mom is so very hard. My heart breaks for them (and honestly, for myself), about how things were "supposed" to be, and it still catches me off-guard at times. The worst is when out in public, people (usually other moms with their perfectly behaved children) stare at me while I am trying to control a full-blown meltdown, and all I sense is "What-a-crappy-mom" vibe from them. The most recent episode occurred while my own mom was with me, and she knew exactly what to say: "Every mom [of typical kids] should walk in your shoes for a day."

Beyond my family, autism has brought some amazing, beautiful people to my life, and I am truly thankful for these individuals - they "get it". It has taken quite some time (good wine, and a LOT of soul searching, too), but I am realizing that my life path is leading me towards helping others dealing with the same, and I am finally returning to school in hopes of pursuing a career focused on therapeutic support for individuals and families managing autism and developmental/sensory processing differences. I know from firsthand experience that early intervention is truly a key to opening the door toward functioning in a "typical" world. I received two phone calls this week about my older son on the spectrum, (my now sweet boy, who at age two had so many sensory challenges I wondered if he would ever attend a traditional/public school - and daily, if I would survive being his mom) and because of all our hard work together, he no longer needs speech therapy or special education for reading (HAPPY DANCE!!!!). He is attending public school with minimal assistance, and we were able to drop his TSS (Therapy Support Staff) almost a year ago. Now most people are not immediately aware of his challenges. When sharing with his speech therapist how hard it was to even leave the house with him six years ago, she had a hard time believing we were speaking of the same boy. I still worry about him, and about his future, but I am grateful for the knowledge he has given me. My other sweet boy is ahead of the game because his mama has already walked this path with his older brother. These are the moments that it all makes sense - these are the moments I am thankful.









Wednesday, September 8, 2010

Knitting Naked for Autism Awareness


We did receive an official diagnosis of autism for our youngest son (which I was pretty much expecting and is the reason behind my "blog neglect"), but before you all think I have gone off the deep end, Knitting Naked is not some sleep deprived, burned out, crazy hobby I have taken up. In fact it is a very real fundraiser, started by a loving grandmother in order to provide her grandchildren on the spectrum needed therapy (Marsha, you ROCK!). It is a tasteful, tongue in cheek calendar, and from the "Knotty Knitters" here is some info: "Have you heard about the Knotty Knitters from Tacoma, WA? When our story was in the local paper, it was picked up by the Associated Press and it has been non-stop since. 8 local knitters and one knitter-designer from New York posed "almost bare" wearing hand knits for a calendar to fund raise for children on the autism spectrum. visit our website at http://www.knottyknittersforautism.com/ Limited Edition, 2011 calendars are selling for $20.00, plus $5.00 shipping and handling." The calendar is also available for purchase at a discounted rate to families of autistic children for fundraising purposes.

The Hubs and I have been talking about fundraising, but with all we have on our plate, I think it may be awhile before we are able to pursue it. I would love to coordinate a 5k race and dinner to follow in honor of my diagnosed boys with funds going towards research. Someday I will. Right now I am pouring my energy into my kiddos as they return to school. Already I have sent numerous emails, requested a change in guidance counselors for one, a change in teacher assignment for another, attended a meeting to discuss a treatment plan for a third, and orientation for preschool for #4 (phone calls from the teacher are imminent for this one), and school has only been in session for two days. I am also applying to return to school myself while juggling therapies for our newly diagnosed son. My ultimate goal is to work with families and kids dealing with autism.

Today, not for the first time, someone said, "I wouldn't know he had autism", about my older son. I know, I should be ecstatic, right? These comments have increased in the last couple of years as he has reached a level of functioning I thought at one time we may never see (It was truly difficult to navigate everyday life with him just a few years ago; I cried like a baby at his kindergarten Christmas concert when he was able to participate with his class in typical fashion - people definitely stared at me - what a mess I was). While this is what I have strived to achieve over the last 8 years, through all the therapy sessions and the tears, it can be frustrating to hear the doubt in someone's voice when I have lived it. Right now I am feeling a little burned out - I mean, raising a child shouldn't involve enough paperwork to wallpaper my entire house (and so far 4 out of 5 have said paperwork), but that is my reality. It is my life, and I don't know that I would change it if I could - in the end I have five amazing, unique children. Is it difficult, often maddening, trying to get them where they need to be? Absolutely, but if it becomes too much, maybe I will just take up a quiet hobby like knitting naked.

Thursday, July 8, 2010

Still Here, Mostly

My friend recently said, "Where have you been?!", in regards to my lack of activity on facebook. Once the weather breaks and Spring has really sprung, I am outside, A LOT. My husband is only half joking when he says that I am solar powered. I am definitely one of those people whose mood improves in direct proportion to the amount of sunlight she receives, and my children are much more manageable with a daily dose of fresh air.

Along with my kids' energy, my gardens erupt in Spring, and beckon me with weeds to be pulled, flowers to be tended and promises whispered of sunshine for my soul. It is my escape - there is something so soothing about working the earth with your hands. With Spring also comes the end of the school year, and then the kids are all home for the Summer - with five here all day it never ends: "Mom?, MOM!, MOMMY!!!!" I can't imagine anything else (actually I can imagine a tropical getaway to recharge, or perhaps a week or two in Italy, but I can't imagine my life without my kids (although right now I could do without all the "extras": autism, AD/HD, sensory induced tantrums, and screaming on a level from a certain three year old that tests every fiber of my being as a mom). There are days I feel as if I may actually lose my mind and truly run away(what mom of more than one child doesn't feel this way at some point, especially during the summer months when school is out? (if you really don't, kudos to you). My sanity is still (mostly) intact thanks to my zoloft and resumed running (another escape and mood booster), but there are still times I am convinced that I am (unwillingly) part of some extreme parenting, hidden camera, game show.

I have also started a new diet and am slightly smaller and healthier as a result, and I am glad to say "see ya!" to that part of me - unhealthy weight that needs to go away for good, but it is always hard to change old habits. I am considering a second blog (in all of my free time) to chronicle this weight loss journey, which I hope will be a true success this time. It is amazing what five babies can do to a body (and mind). I have been searching for my pre-baby self for awhile, and the legs are finally returning thanks to the new diet and all of my miles run (portions of my mind may be MIA for years to come).

In addition to my lost pounds, we are minus a few pets (just fish) at this point -"Lucky Bob" a.k.a. "Swimmy" is lucky no more (he apparently didn't like the move to his new digs), and we also lost two of the three new goldfish we added. I don't think we are good "fish people", but better the fish than my dogs or cat. As much as Stella drives me crazy, I know it will be a whole 'nother ballgame when my old girl says "goodbye". She is 10.5 years old, and her age is starting to show in the white fur covering her face, and the way she seems to "zone out", just standing and staring off into space.

Mostly, I have been busy with our new therapists for Sam (Currently OT and Specialized Instruction 1 x a week, PT every other week, and Speech 1 x a month). Our autism evaluation is coming up, and that has been on my mind as well. We may or may not get an official label (obtaining additional services is so much easier with one). There are moments I wish I could go back to the summer that I was pregnant with him, and to the few months after he was born when all seemed to be "normal". I remember thinking how much easier he was than our other son with autism, and in many ways he still is, but there are many differences that I am still navigating.

Lastly, I am looking at returning to school. I have always wanted to pursue a profession that would enable me to help others, and the path my life has taken with my children has made that choice more concrete. All those years ago when the hubs and I dreamed of this life it wasn't quite what it is now, but it is still here that I imagined I would be, mostly.

Monday, May 10, 2010

The "A" Word



Houston, we most definitely have a problem. Below is what I had written in mid-April:

4/13/2010 "Early Intervention arrived yesterday for a three hour evaluation and Sam is functioning at about a 13 month level at age 19 months. I was very calm while they gave me the results. (One of the evaluators even commented about my reaction, remarking how well I took the news. I was expecting their results and had been through this before - they weren't telling me anything I didn't already know, even if it was deep down in my heart.) We still have lots of evals ahead, and may not know for several months or longer if we are looking at just a developmental delay or autism, but I have a pretty good idea which direction we are headed toward. I have suspected for months something was "off", but last fall there was not enough of a deficit for Sam to qualify for therapies. We are also participating in a sibling autism study, and experienced the same results: slightly delayed, continue to monitor. Now the delay is too significant to ignore."

Fast forward to May 5th, a mere three weeks later, and I was sitting in the CAR (Center for Autism Research) waiting room with Sam. Looking back, I have suspected for the better part of Sam's life that we would likely hear the dreaded "A" word, for the second time as parents: "Autism". I remember crying to Marc last Fall as he tried to reassure me, and me saying to him "I know what I am seeing!" My fears were solidified last week when I drove Sam to CAR to meet with one of the doctors who is part of the sibling research study we have been participating in since Sam was six months old. We were not scheduled for a visit, just an 18 month phone interview, but because of his increasing delays, our growing concerns, and the red flags that showed up on his M-CHAT (The Modified Checklist for Autism in Toddlers), they requested to see him.

Within the first 5 minutes, I knew what the doctor would tell me, but there was still that sliver of hope wedged in my mind that refused to budge until she uttered the word. I wouldn't say it for her; no, she would have to be the one to utter the word. After she said "Hello" in the waiting room and spoke with me, she then attempted to engage Sam several times, saying his name over and over, but he did not turn to look at her or even acknowledge her presence. Before we left the waiting area she said to me "You look concerned", and I thought, 'Autism', but I said, "I just want some answers". I didn't want to sway her perception and I wanted a truly objective opinion.

We walked the hallway back to the same little exam room we had visited for his 12 month eval. Two other women, part of the research team, stepped out to say "Hello, Sam!" as we passed their doorway. He didn't respond. Sam also had no interest in the toys laid out for him, and instead chose to focus on my bag and water bottle, poke at the door stop, and smash his face into the office chair that was every autistic child's stim dream - it would spin, had a texture to the seat with holes he could look through, and wires across the back. ( A "stim" is a self-stimulatory behavior; they can be very disruptive and all-encompassing). When he did use the toys it was in a repetetive manner - turning the dial on the toy phone back and forth, without purpose.

The doctor turned to face me, and the look of sad understanding in her eyes told me all I needed to know. We were scheduled for a two hour visit, but it took her less than a half hour to assess Sam and say, "He needs more intervention". I said something like "So, you think that it is...." trailing off, and she replied, "I can't give you an exact diagnosis of where he will fall on the spectrum, but yes, I believe we are looking at autism". It suddenly felt like she was talking to me from very far away and I had landed in a place that I had hoped we would never visit again. She called me an "expert" when I told her through my tears, I had suspected, and she added, "unfortunately science has not caught up with a mother's intuition". I had prepared myself for this, yet I still was holding on to the slim chance that I was wrong up to the moment she spoke that dreaded word. Sam will have a full diagnostic evaluation in the Fall at age two and then we will know exactly where he is on the spectrum. A formality really - the label isn't as important as making sure he receives the necessary therapies.


I know in my soul that there is a greater purpose within all of this, and in helping the other parents I reach out to, I have glimpsed the direction my life is meant to take. Right now I am grieving and moving towards acceptance. At any given moment, I cry, [a lot] but I know it is part of healing, so I let the tears fall. Anyone who has had a child diagnosed knows there is a tremendous sense of loss upon hearing "autism", but I know from our journey with our older son that many moments of beauty lie ahead, waiting for us - different, but still beautiful.


*Please see www.firstsigns.org for info on early signs of autism.

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.