Welcome to our family blog (those of you coming to us from Spectrums Magazine)

It’s warm here today! The first time we’ll surpass 70°F this year (and we haven’t done that since mid-October of last year).

Here’s where we stand today:

• 3 of the 4 of us are suffering from allergies
• The premiere issue of Spectrums Magazine is out this weekend! Look who’s on the cover!
• We’re going to dye Easter eggs later this afternoon (that should be an adventure)

We’ll have more posts up beginning tomorrow. We hope to have lots of new visitors to the family blog as the amazing magazine makes its rounds.

Until then, the ‘McDowner’s’ are wishing you much happiness on this sun-kissed weekend (if you’re in the Pacific Northwest).

Lots of things have happened.

We were able to buy Sam the iPad Mini.
Sam broke his arm.
Rob is suffering from the effects of vertigo (and we suspect he has Meniere’s Disease).
We traveled to California unexpectedly recently.
We’re excited for spring and eventually summer’s arrival!

We just keep moving forward.

We’ll have more updates this week as we’ve recently unearthed some old videos and it should be very interesting to look back and be amazed by how things have progressed.

We’re all wishing you a happy spring!

Sam has really been excited about the aspects of Halloween that we have tried to emphasize this year. Things like pumpkins, autumn, harvest, going to the pumpkin patch, wearing a costume, and going trick-or-treating.

This has been a month-long process which means that it has been exhausting! We worked tirelessly to communicate with Sam and to give him the tools and confidence to communicate with us on things like:

• Merchandising: scary places in stores (asking if he can walk past them and not look, or if he wants to walk around them – or completely avoid them)
• Scary houses: whether he wants to cover his eyes or not as we approach houses with visually gory decorations
• Television: whether certain images on TV are scary or not
• When he DOES see scary things: reassuring him that ALL these things he is seeing are NOT real

Sam decided at the beginning of October that he wanted to be a Doctor for Halloween. His first intention was to be an American Girl Doctor so that he can possibly make sure his American Girl dolls were healthy and safe. When Halloween arrived yesterday,  Zoë took the initiative on getting Sam dressed in a costume.

He had the lab coat, a name tag that his sister made, and decided to wear a wig (our Afro wig) and his Frankenstein gloves. Sam deemed himself  The ‘Silly Doctor’.

Zoë (Katniss) & Sam (Silly Doctor) photo by Jen Downer of She Saw Things Photography

Sam, The Silly Doctor, hiding from Mom’s iPhone – photo by Jen Downer of She Saw Things Photography

We filled the month with trips to pumpkin patches and little activities to celebrate Fall. Jenny worked with the kids this past weekend to make painted pumpkins and funky Halloween wreaths. They loved it!

Pumpkin painting & Halloween wreath making – photo by Jen Downer of She Saw Things Photography

Artists at work – photo by Jen Downer of She Saw Things Photography

When October 31st arrived Sam was really excited. He kept saying things like “Weh deh coh-tume! YES!” and “Go to tick o teet! YES!” his special education class at school was having a party too (this has been a HUGE help to make same feel more comfortable with Halloween) and Sam had a blast there too!

We got home from school yesterday and did some last minute pumpkin carving (well, to be honest, it was me gutting them and then asking the kiddos to draw faces on them. I then carved them out and set them on the porch. We had time constraints and needed to make this pastime happen lickety split!)

Quick Dash to carve pumpkins before Trick Or Treating – photo by Jen Downer of She Saw Things Photography

Our trio of pumpkins

Jenny took Zoë across town so that she could go trick-or-treating with her good friends. Sam was so confused as to why he wasn’t heading out with Mama and Ki Ki (he calls Zoë KiKi because he cannot pronounce ‘Sissy’). I reassured him that he and I would be going out together just after they left. He understood and we finally made our way out into the neighborhood just before sunset.

Sam, The Silly Doctor out in the ‘hood doing the Trick Or Treat thing!

Sam did a wonderful job. He communicated with me on which homes were ‘Too Carey’ and which ones he wanted to ‘Go to tick oh teet dis house, YES!’

He knocked on doors, he said ‘Tick oh teet’ and ‘thank you’ and the all important ‘Happy Halloween!’

One thing that really struck me was Sam’s enthusiasm. He kept saying “Meet mo people! People in coh-tume!’ which meant that he was really wanting to meet more people in costume. He happily greeted fellow costumed kiddos and recounted the different ones he thought were so fun.

When a girl walked by with a Katniss costume (the same thing that his sister was dressed as) he went nuts! “Wook at dat, pappa, pappa, pappa! Kat-neh, KiKi coh-tume too! YES! YES!”

This is a huge leap for Sam. To be able to relate that to me was just so intense. Keep in mind that we are talking about a kid who had maybe 10 words he could say a year ago. Now he is formulating sentences and getting more and more complex feelings, observations and thoughts out there every week that passes.

When we got back to the house, Sam burst in the door and stripped off his costume. He said “Papa! Count dah candy! YES!” I made a deal with him that we would count the candy and play with the glow bracelets in the dark AFTER his pajamas were on. Before that happened, I interviewed Sam:

The Recap: Sam’s First Trick Or Treating Experience from Rob Downer on Vimeo.

So, the experience was great. It certainly hasn’t been without moments of terror and anxiety – but- the difference here being that we really worked hard to talk and communicate about these things using a variety of methods. This seemed to work well and I am just thrilled at all the possibilities!

Now we can focus on Thanksgiving, Solstice, and Christmas time (and that is EASY!)

This time of year is NOT our favorite.

photo by She Saw Things Photography

This is heartbreaking because we’re an autumn loving crew. The harvest time, pumpkin patches, soups & stews, sweaters, pants, boots… This is a time that the McDowner’s would love to celebrate fully and without challenges!

Not so fast… There’s this big, scary, gory, horrifying, disturbing, ghastly trend that seems to be getting more extreme as each year passes.

It’s called Halloween and in 2012 they seem to be ‘turning it up a notch’.

September arrived and it seemed to start out pretty positive. Zoë started getting her Halloween costume ready a month ago and Sam has been talking about ‘Haddoweenuh’ since the catalogs have arrived.

It was October 1st when it all came to a screeching halt.

The newest line-up of disemboweled, dismembered, decomposing, compound fractures, blood drenched, blood soaked crap in the name of ‘Halloween’ has arrived.

We have, as you know, a daughter who is a neuro-typical 9 year old. We also have a 7 year old boy with ASD and Executive Function challenges. BOTH kids are terrified.

So, both Jen and I are ‘gearing up’ for another exhausting October. It’s filled with things like:

• Having to find different streets to take that don’t have as many horrifying decorations
• Choosing what stores to enter, where to enter them, and which parts of the store to avoid
• Providing new tools to Sam so that he can shield his eyes, recover from a panic, or feel safe
• Creating a new set of ‘safe’ Halloween celebrations in an attempt to redirect Sam’s fears

These are just the challenges that we face. These are similar to the challenges many families face with kids who have special needs and kids who don’t have them.

I’ve written about this before. It seems like my 3rd annual ‘curmudgeon’ post regarding Halloween. If I step back, I find humor in how much I sound like an old man who’s shaking his cane at the young whipper snappers on my lawn. But then I step back further and see that I’m more rational than I think.

At what point did we decide that the glorification of these things is ‘cool’? When was it that demonic baby dolls covered in blood, or dismembered torsos became the new ‘it’ thing? How about the commercials in prime time that show the scary imagery at the local haunted houses? Thankfully we’re still in the process of weaning all of us off the TV.

There’s a lot of great information and help out there if you’re experiencing the same things. Here’s a shameless plug for Jen’s recent contribution to NW Kids magazine (a free publication here in the Portland Metro Area). Jen talks about these things and gets advice from Barbara Avila of Synergy Autism Center.

photography by She Saw Things Photography

We’ll keep you updated on the things we do to make the next few weeks better!

I’ve been thinking a lot about our summer, about how great it was – but – how unsustainable it was for Jen and I to put work on the back burner and focus on the kids for 90 days!  There’s NO regrets here, just a determination to figure out how we CAN make it sustainable next summer!

It always seems to take a month or two for us to get into routines that work. Here’s a quick rundown of things that are working:

• Jen has made some changes to the kitchen that have been well received by Zoë, Sam and myself
• We’re eating dinner and breakfast at the kitchen table
• We’re gradually weaning the kids off Television
• We put the music on more often and have sudden random dance parties
• Jen makes the kids a ‘green’ smoothie at least 5 mornings each week (Sam calls it Miih Piggee Joooce – Miss Piggy Juice) it’s packed with amazingness (kale, almond milk, chia seed, pineapple, mango, and pro-biotic)
• I’m trying to make as many ‘fun’ foods as possible
• We’re doing art, dressing up, playing with dolls, creating, making, staying busy

We had our annual beginning of school meeting with Sam’s teachers. It’s always interesting to meet the new teacher for the mainstream class. We get to describe our amazing boy and it’s a lot of fun. This year, Sam sat at the table with us during the meeting. He stayed, present, and listened intently. Sam even inserted his corny laughter when we said something funny. The challenge this year is that his inclusion time in the mainstream classroom drops dramatically because of the increased emphasis on academics.

Jen and I are still seeing a family counselor. It is such an important component to keeping our heads from exploding. We’re turning our focus toward helping our family cope with stress and anxiety now (specifically) and I’ve determined that I need to see a separate counselor to help me address many of the things I have placed ‘on a shelf’; my father’s death, my biological mother’s death, the ever-growing pile of important jobs around the house that I cannot complete, etc.

Halloween is around the corner. It’s very much on our minds given Sam’s relationship with the holiday. This year Sam seems to be having a positive attitude about it but it’s early… The most vile and disturbing imagery will inevitably emerge; mannequin-like bodies hanging from trees or eaves, dismembered bodies and their parts, blood, guts… you know, all that amazing imagery that has nothing to do with Halloween’s roots or of the season where we celebrate harvest and the coming winter.

We’re looking forward to getting back into the swing of things! We’re going to make a new push to keep this blog active. It’s just so challenging, but it is very much worth the effort!

Sam is now 7 years old. He learned how to urinate in a toilet (consistently) about a year ago. He has yet to have a successful bowel movement on the toilet.

There are many causes, from Sam’s idiosyncratic relationship with his own body, the cues he simply does not get (the ones we take for granted in our own body / the messages to the brain that signal that it’s time to go)  and his hypotonia (low muscle tone).

This is a work in progress AND it’s a difficult subject to broach. We are constantly trying to assist Sam and are always working, always vigilant in protecting him, trying to teach him the boundaries, to show him what is good and bad. We’ve only just reached an important milestone – where Sam is able to feel his body’s cue when it’s time to go pee. Even better… Recently he has done so by himself! Yay! We still have to routinely take him to the bathroom though and deviating from that routine will often result in him peeing on himself, or somewhere other than a toilet.

We’re on the right path right? I mean, come on… this progress is awesome!

I suppose I’m taking this opportunity to vent a little. Sometimes it’s overwhelming and exhausting. Sometimes it’s embarrassing and challenging for Jen & I and most of all it must be awfully uncomfortable for Sam.

Think about it… 7 years! If you are a parent, take a moment to think of how ready you were to stop changing diapers. I’m not complaining, I’m just telling you, the reader, so that you might have more compassion toward parents who have children with special needs – often, you have no idea what kind of work happens in the day to day.

I’m sparing you all some of the most awkward tales… Things like being at a party, events, restaurants, etc.

So what do we do from this point forward?

We’ll keep trying to help Sam transition from pull-ups to the toilet.

We’ll do what we can using a low-pressure approach. The worst thing I could think of is to create a lifetime of anxiety around bowel movements for our son.

We continue to support Sam the best that we can. We’ll not push him, or force him, shame him or punish him. These tactics seem to be things that may have occurred in my generation when we were young… Instead, we continue to provide Sam with a supportive and encouraging environment.

Perhaps this fall may see big changes? Maybe the beginning of 2013?

This is the first year that Sam walked in the parade, and he was wide eyed with his hand glued to my hand the entire time. It was a whole lotta stimulus going on, and he handled it beautifully – observing and enjoying.  And Zoë rode her scooter like and old pro doing jumps and wheelies along the route.

Here is a bit of what the 4th of July looks like in our little world.  We hope you’ve had a fun and safe holiday!

love, The McDowners

Tonight I had a chance to bond with Zoë as I taught her how to ‘start’ riding her new (old) bike that she bought yesterday (using some money in her savings account) and it was an experience filled with excitement, joy, pride, fear, shame and sorrow.

I know those last two words may seem a little shocking? How could these things happen in the midst of such a joyous occasion? I’ll take you there…

photo by Jen Downer of She Saw Things Photography

The following exchange between Zoë and I came after she first realized I was running behind the bike but no longer holding the banana seat:

Zoe: “Wahoo! (deep sigh, then in a quiet voice) I should have learned to ride a bike when I was 5 years old (sounding and looking embarassed).

Rob: “Hey! You are totally doing this… I am so impressed with how well you’re doing… You should never be ashamed, or embarrassed about not learning to ride when you were 5. That’s MY fault.”

Zoë: “It’s just that I see little kids riding and I’m 9 now”

Rob: “It’s not your fault, it’s mine. I am so sorry that we are so overwhelmed. I really want so badly to not feel overwhelmed and you need to know that I love you and think you are way cool and absurdly awesome.”

Zoë: “Thanks Dad (she tries to hug me and falls over)”

Rob: “You okay?”

Zoë: “Yes, I guess I’m overwhelmed, or maybe I’m gonna fart? (she chuckles)”

Rob: “Seriously though, you need to not  feel ANY shame or embarrassment. You just need to feel determination and pride because you are making it happen. You will succeed if you believe you can ride.”

Zoë: “Okay, thanks dad”

She then rode her bike by herself (wobbly at first) down the sidewalk.

This may not seem like a big deal. Kids from all walks of life learn things at different ages. Some kids never learn to swim, others don’t learn to ride bikes, or play musical instruments, or sports, etc. Some kids never have the opportunity to do any of these things. These things I am aware of, they are things that I feel a great deal of empathy and compassion for.

The big deal for me is that I feel bad. I don’t like to see my kids feel shame or embarrassment for things they shouldn’t feel embarrassed about or ashamed of. The reason that Zoë hasn’t learned to ride a bike is me. I have been putting it on the ‘shelf’ for 4 long years and it broke my heart tonight.

This will pass. I’ll get over it. I just felt really raw because we spend so much of our time and resources on Sam; keeping him safe, keeping them from killing each other, Sam’s day-to-day needs.

The great news is that Zoë is on her way to being a bike rider and this will ultimately get the whole family out on bikes.

I want to make one thing clear though… keeping it all together and keeping it ‘real’ is very challenging. It became very clear to us that we cannot work full time jobs 7 years ago when Sam was not yet diagnosed. For the past 7 years through the challenges of receiving Sam’s ASD, Hypotonia, executive function disorder, and communication disorder diagnosis we’ve been meeting each challenge with as much positivity and determination to adapt as possible. Somehow we’ve made it this far by creatively keeping our bills paid. As of June, we are each small business owners; Jen with She Saw Things Photography, me with He Says Things (social media marketing consulting, copy writing, and writing service) and I’m not sure if we’re crazy or brilliant (time will tell).

This summer we’ve decided to make things happen. It has become clear to both of us that we cannot do this alone and we have launched the first of many ways for us to raise money.

The first is something called FundRazr. This is a fundraising service that we used in 2010 to raise money to help fund the cost of Sam’s speech therapy. In less than 1 week over 60 people donated money to that cause and we were stunned, humbled and extremely thankful. We’re using this campaign again and are in the process of planning many other events this summer.

We have a commitment and determination to our family and to the family blog. The blog’s purpose is to give people a very real and honest view of our ups and downs as we raise two amazing children and find a way to celebrate living with Autism (rather than mourning it).

The funds that we receive will be used for the following:

1. Occupational Therapy (Sam’s response to the OT sessions in the Spring was remarkable. The medical insurance that we pay out-of-pocket for is coming to an end. The kids will be able to qualify for a state funded medical insurance program at no cost to us, but the services Sam needs in order to address his communication and executive function disorders has little or no coverage)
2. Speech Therapy (Like OT, Sam’s progress with communication is astonishing but we need help. We’ve been on hiatus with his therapist due to a lack of funds and would love to be able to see her again soon)
3. The new iPad (We received an iPad as a donation from a dear friend of ours. This device has been an amazing tool in helping Sam with everything from fine motor skills to communication. The new iPad has a built-in camera will help us to better utilize the adaptive communication apps that we’re using to help Sam through his daily routines during summer vacation)
4. ‘McDowner Family On Tour’ in August (Jen is taking her photography ‘on the road’ from Portland to Northern California. She’ll be working by doing photo sessions along the way while the rest of the gang is tagging along. We may use a portion of the funds to help cover the cost of fuel as well as a day at the Monterey Bay Aquarium)
5. upsidedowner.org (We’d love to be able to cover the cost associated with running the website; domain name fees, hosting, etc.)

If you would like to help, the FundRazr can be accessed HERE.

If you cannot donate would you please help to pass this along to friends and family who might be? You can send the following link: http://goo.gl/g1ZAd

Last of all, we want to thank you all for keeping up with us here. We enjoy sharing and connecting with people!

Let me start by making the following observation:  I attribute the core of our success being therapy. This experience has helped Jen and I to strengthen our already rock solid bond and to keep us afloat. We are really very lucky to have found an amazing family therapist that completely ‘fits’ for us.

Warm, dry, sunny summer weather hasn’t quite arrived here in the Pacific NW. We’re keeping our fingers crossed that the ‘typical’ arrival of summer comes around July 5th. We’re still in June(uary) for goodness sakes!

Over the past few weeks we’ve gone on some adventures of extremely sweet & tasty proportions. It would seem that we’ve found a trusty friend in Columbia Farms on Sauvie Island.

They’re only about 20 minutes West of our neighborhood on the magical Sauvie Island. The promise of a bumper crop of strawberries called to us and so we embarked on that journey.

Sam was ready! He grabbed a wagon and a couple of flats and we were off to the strawberry fields (forever?). Just look at that determination on his face!

Zoe was an excellent picker! We spent about 40 minutes there and between the 4 of us we landed quite the bounty! We took the strawberries home, washed them, removed the stems, and ate 1/3 of them. The rest were frozen on trays, then I put them into labeled vacuum seal bags, sucked all the air out, and found a home for them in the freezer.We returned yesterday to find that the strawberries have all been harvested. We delighted in the blueberry crop being bountiful and ready for harvesting already!

Berry picking is an interesting adventure with the kids. Sam does fairly well when we embark on these types of adventures. The strawberries posed several challenges. Sam was scared of the busy road we had to cross to get to the fields (even though there wasn’t much traffic on this farm road). Once in the field, we were challenged by his spatial awareness; explaining that it wasn’t good to step on the row of berries, that picking everything wasn’t a good idea, and that removing 10 of the wire flags that marked each row’s type was a bad idea. We replaced the flags together and eventually redirected Sam to the wagon.

For the blueberry picking adventure Sam was more focused. We went with our dear friend Amy and her boys. Sam may have eaten a pound of blueberries off the bushes…

 We’re really optimistic about the other adventures we have planned for the summer! These adventures certainly were TASTY!