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    Jen & Rob write about living life 'Upside Downer'. Follow us through our honest, whimsical, and real observations as we raise two kids (one w/autism)
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It’s not often talked about…

I debated for some time when it came to writing this post. While there are many challenges faced by families living with Autism, one challenge that we face (like so many others) is toileting.

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?

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July 21, 2012 - 10:01 pm

Jen D - That’s got to be so hard for so many reasons. Elsa was pretty well trained by 2.5 but then had a major regression before Miles arrived that continued for a long time. And she still has accidents – every day this week, in fact, just when I thought it might be safe to ditch the padded training pants! Potty issues are so hard and there’s not much you can do. I know. I tried. Nothing works until they want to do it. Good for you for hanging with Sam for so long. You are such good parents.

Happy Fourth of July!

We live in the Eastmoreland neighborhood of Southeast Portland, and every year there is a neighborhood parade of epic proportions.

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

 

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sometimes there is fallout

I love my children with such intensity that I’m amazed that I don’t explode (literally) into a billion bits.

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.

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July 2, 2012 - 6:53 am

kati - dad guilt… sounds like it’s right up there with mom guilt! ugh! the worst! someone needs to tell you that you guys are way cool and absurdly awesome and you are making it happen. -signed, the mom guilt queen

July 2, 2012 - 6:28 pm

Rob - It’s a rough one Kati. We’re often so very unnecessarily hard on ourselves (as parents) right? Maintaining the high levels of energy involved in parenting a child is big. Then I’ve found that adding Autism to that mix, while balancing the needs of a ‘neurotypical’ kid who doesn’t need the same constant supervision is intense. One could argue that these things that Zoë experience are vital components of building character. It’s moments like last night when I stop and realize that so much time has passed (in which I have said “I’ll get to that next week, or next month, etc.” so many times that weeks turn to years) and I mourn it a little. Somehow I have found that sharing these things allows me to immediately come back fighting with as much positivity as I can possibly muster. That’s the Gemini in me I guess ;o)

July 2, 2012 - 6:55 pm

Shelly - I think that this is what my friends call “benign neglect”! I think that itʻs a rough one for everyone involved. It is difficult for siblings of children with autism, as a comparable family dynamic generally plays out (possibly except for families with multiple children with autism). Although Z is comparing herself to younger children, there are some adults that have never learned how to ride a bike (my Nana being one of them)! It sounds like you did a great job of taking the responsibility from Z about an activity that you agreed to share, but didnʻt get around to. And understandably so. But I also want to encourage both of you to not be hard on yourselves! My point being: You are doing it now. 🙂 Ride on Z (even if you have to fart)!

July 2, 2012 - 9:35 pm

tara pollard pakosta - Tell her my daughter didn’t learn to ride a bike until just before she turned NINE, yes 9, years old! just like Zoe! Nothing to feel embarrassed or ashamed about at ALL! Ava was not going to do it until she felt she could 100% do it herself so I just let it go on the back burner as well. Ava has an older sister who has anxiety/ocd and we put a LOT of time into her as well which takes up the energy so often that Ava will ask, “what about me?” it’s easy to overlook the quiet one, the one that doesn’t ask for “alone time” or dates with mom/dad….don’t feel bad about it!
that’s LIFE!
you guys are GREAT parents!
go ZOE!!!!!
tara

July 7, 2012 - 7:17 pm

krista - wressey didn’t learn to ride a bike until he was almost 10. we have our share of overwhelm here too. lookin good zoe! (and i hope you have a helmet)
krista

July 9, 2012 - 4:54 pm

Rob - [Rob]: Zoë has a sweet helmet – it’s a Matte Black hybrid skateboarding/biking helmet with a rad Paul Frank design on it (that gives it just a touch of feminine but not ‘too girly’). She’s also rockin’ the bike (didn’t take long for her to fall in love and become obsessed…)

this summer we’re making it happen

Jen and I have a really phenomenal connection with each other. I think that this (and lots of crazy love for each other) is how we have made it this far in our marriage while facing so many challenges.

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!

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sweet, savory, & scrumptious summer (so far)

I’m almost afraid to report that summer has been so delightful so far as if it’s going to jinx us or something?

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!

 

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June 29, 2012 - 8:58 pm

kati - awesome! love me some sauvie berries.