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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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Now that it has sunk in a little

Jen has been insisting that I watch Loving Lampposts for about a month now. It’s no secret that both she and I are obscenely busy but add to that a healthy dose of my own special brand of stubbornness and, well… things that land on my ‘to do’ list take longer than usual to complete.

Sam at swim lessons

I worked diligently Sunday & Monday and set aside just enough time to watch the movie before getting the kids from school.

After watching it I said to myself “How silly! Why did it take me so long to watch this phenomenal documentary?”

Loving Lampposts is a documentary film directed by Todd Drezner and produced by Lauren Silver.

Todd Drezner (who’s also a father of a boy diagnosed with ASD, also named Sam) has presented a thought provoking, personal, and intimate view on Autism. The film takes you from the widespread panic that results from mass media fear mongering to a gentler approach of acceptance and awareness of Autism while introducing the viewer to the concept of neurodiversity.

After taking a day to reflect on this important film, I feel a great deal of gratitude, pride, and relief.

I’m grateful for having a documentary that will help us to educate our friends, family, and community about Autism AND perhaps give them a bit of a glimpse into how we have decided to support our son. Both Jen and I firmly believe that we want Sam to be happy with no expectations of making him ‘just like everyone else’. Our main focus is to help Sam find his ‘voice’, to help him become more independent, and to love him unconditionally.

When Sam paints it becomes a large scale sensory adventure

I was filled with pride as I watched parents tell their stories. These were parents who seem to have adopted the same kind of support, acceptance, love, and patience that is required to raise a child on the spectrum.  They work tirelessly with their children to help them to succeed… It becomes more than a full time job.

It’s really validating to find acceptance through observing the methods that many of these families have used to work with their kids. It was an affirmation for things like:

  • Mimicking Sam (repeating his words, even when they sound like gibberish, sometimes mimicking his jumping, dancing, laughter… it is Sam’s way of engaging with us)
  • Letting Sam play, even in ways that are odd; with his noodles when we have pasta, allowing him to create ‘drawings’ with them, etc.
  • Being patient – sometimes waiting what seems like an eternity.
  • Following his cues; in play, in physical contact
  • Not forcing him to be completely potty trained (I’ll discuss this more in a future post)
  • Not telling Sam to ‘Stop’ when he claps or flaps his arms (though we do ask him to try to use an ‘inside voice’ on occasion; i.e. some restaurants or library situations)

Sam's Dinner Art

There’s many more situations that we’ll undoubtedly share as time goes by.

Last of all… I felt a great deal of relief.

I’m relieved that there is something so thought provoking out there that gives a voice to Autism. It brings attention to the fact that Autism is NOT a terminal ‘disease’. There have been absolutely NO cases where they have been able to show that Autism occurred because of vaccinations. Autism is NOT contagious, it will NOT ‘spread’ from kid to kid. Most diagnosed with Autism will not be in a corner in the fetal position for the remainder of their days (which seems to be the sensational impression that western media is making on the public).

I know that there are people out there who experience daily life the way we do. In many cases, there are people who face challenges that far surpass those that we face. What’s comforting is seeing these folks and hearing that they too feel similar challenges, that they are committed to living life in an unconventional way, and that they passionate about their children receiving the supports they need.

If you have the time to watch Loving Lampposts please do!

 

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March 21, 2012 - 7:05 pm

Monique - I LOVED that documentary! I see so many similarities between autism/aspergers and ADHD/ADD and sensory processing disorders that I kind of hope they are all on the same spectrum…I hope this because it means there’s a bigger bunch of these awesome kids and a bigger support group of parents who are striving to understand how these kids work and more importantly how they can succeed!

May 8, 2012 - 9:16 pm

tara pollard pakosta - cute picture with the paint!
My daughter Savannah was CONSTANTLY painting on her body from ages 2-8, non stop! she loved it! She is 12 and still plays with her food and eats with her hands. my husband gets so frustrated, but she is just very tactile and I have learned to accept that!
tara

Root Beer

Zoë decided that her contribution to the blog this week would be a movie.

She was going to do a report on a book she has enjoyed reading but that didn’t pan out. We’ll hopefully see that soon.

The movie is a little long so don’t feel obligated to watch it all.

This past week she and I made root beer using a kit she got for Christmas. She wanted to interview me and so we did this project today.

If you want to make root beer at home it’s pretty easy. Rather than spending a lot of money you can get your own 2 Liter bottle (clean it), buy dry champagne yeast, root beer extract, and use your own water & sugar. Here’s a nice & easy recipe for making Root Beer & Ginger Ale.

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February 6, 2012 - 7:13 pm

Jen D - Awesome video, Zoe and Rob!

February 8, 2012 - 12:42 am

Rob - Thanks Jen!
We’re going to try some adventures in bread making with Sam’s help soon!
– Rob

Funding

One of the biggest challenges we have is funding.

It’s very clear that Sam needs to have several types of therapy to help his brain sort through his issues with executive function. We’ve been paying out-of-pocket for medical insurance for Jen, Zoë & Sam for more than 3 years (I was dropped from our insurance 3 years ago for having discussions with a physician about chronic shoulder pain and occasional heartburn – you know, the things we’re programmed to ‘talk to your Doctor about’) and oddly enough, the expensive insurance does NOT cover Sam’s Speech or Occupational Therapies because he has not been in an accident that resulted in brain trauma that affects his speech/communication. Autism is not recognized by our insurance and therefore, it won’t cover the things Sam needs above and beyond general care (well-check, immunizations, occasional Dr. visits).

There are several organizations and non-profit groups fighting to get reforms on the ballot that will require insurance companies to recognize Autism and to provide better coverage for the essentials. We’re hoping that the necessary initiatives get on the ballot and our whole family will be working hard to get the word out there to help the bill(s) pass!

In the meantime, we are feeling this urgency to move forward with therapies that we simply cannot afford. The urgency stems from Sam’s emerging language and changes in the way Sam is processing emotions. Suddenly, last week, we received a call from our Service Coordinator at Multnomah County Developmental Disability Services that funding for families was suddenly available. We recently lost funding during the previous allocation of funds so this time Jen jumped into action and got all the paperwork together, made tons of calls, and in less than a week we received funding for 6 Speech Therapy sessions and 6 Occupational Therapy sessions!

One thing that I am constantly aware of is how challenging the bureaucratic side of things is. How would we do all of this if we were in an even more desperate situation than we are now? How would a family that is stretched thin able to make these things happen? I’m always keeping this in the back of my mind and feeling thankful that our heads are above the water just enough to wade through it all.

So away we go! It’s going to be a very busy 6 to 8 weeks as we fill our already full schedules with these appointments. We’re so excited to work with Shelley Molinaro (MS/CCC/SLP) and equally excited that Sam will be returning to Therapy Solutions For Kids (where he first received Speech, Physical & Occupational Therapies almost 6 years ago).

We will try to post updates on each of these important forms of therapy for Sam over the next 8 weeks as we come up with clever strategies to keep the funding going beyond these 12 sessions.

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no need to apologize

I find that taking Sam out, leaving the confines of our home, and getting him out to do things is often much easier for me than chasing after him room by room.

We like to travel to many different locations. When the weather is good we often mix in some park time with important errands. Sam genuinely enjoys being out and doing things & activities that engage him both mentally & physically. The only time it becomes difficult is when Zoë doesn’t want to go out. This is almost every single time I rally to get the three of us out and about. Z is simply a homebody and would rather kick back at home than go out.

Fortunately, Zoë is at an age where she can stay home when Jen is working in her office and keep herself entertained with art, reading, computer time, or imaginative play. I don’t blame her at all for desiring those activities and loathing going out of the house and wading through the crowds of people out there.

When we do go out, we frequently find ourselves in many small businesses around town and most of the owners/staff get to know us. The funny thing about this is that I wind up (more often than not) using these interactions as my ‘litmus test’ for a business. If I’m met with rudeness, intolerance, annoyance and indifference then I become a non-patron very fast. I also write about it in reviews or on my own blog.

What some folks don’t realize is that there are many people out there with strong voices… I’m certainly not alone.

Aside from interactions with employees, owners and staff I find myself interacting with other patrons and people in public. I do a LOT of educating about Sam and about Autism.

I love talking to people. I love helping folks become more aware of people with special needs and about people on the Autism spectrum.

I have only one complaint.

Please. Please. Please DON’T say “I’m so sorry” in response to my telling you that my son has Autism!

Autism isn’t terminal.

Autism doesn’t mean that my child doesn’t have thoughts, feelings, or emotions. It also doesn’t mean that he doesn’t have an enormous capacity for learning and endless potential. It doesn’t mean that he is any less valuable or important as a human being.

It’s kind of a big one because it happens so often.  I absolutely believe that people have the best intentions but…  I’m doing my best to tell people so that they might try to stop doing that.

Many times I find that I’m approaching someone that I’ve overheard making comments about my child’s behavior, sometimes I am reacting to what I perceive to be disapproving looks.

It’s important for people to keep in mind (when they’re out in public) that their perception of how a child is behaving isn’t necessarily correct.

And last, there are people out there who are just going to be grumpy and intolerant and there’s just nothing I can say or do to help you see things from a different angle, or with more compassion.

To those folks I say “I’m so sorry”.

 

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Teef

I am in mourning. It’s a soft mourning, but I am feeling the loss and fear nonetheless.

Sam is losing his 2 front top teeth.  They are all caddywompus and dangling. Any day now – any HOUR – they’ll fall out and make way for the big, adult teeth that will grace his smile for the rest of his life.

Yes, I know this just a part of normal development, and I’m really not often one to feel super emotional about my children growing, changing, and reaching new milestones. Typically we celebrate them.  But this one… this one is hard for me.

Developmentally, Sam is very much still a toddler – around 2 or 3, and in some areas even younger. In so many ways, just a baby-guy walking around in an almost 7 year old’s body. Frankly, many of his behaviors – his impulsivity, his emotive frustration with his limited ability to communicate, his lack of safety awareness, his need to still wear diapers part time, his attachment to chewing on a pacifier, etc, etc – are so much easier to accept because he is still so young. His face still such a baby face. (He’s soooo CUTE!)

The loss of these teeth. It is sort of the first of many physical changes to come, as we move into big kid-dom, tween-dom, & teen-dom. And this cold hard fact scares me. We live so very much in the present, and I have not allowed myself to spend much energy thinking about what it will be like to have  an older child with the differences that Sam has. We have always just celebrated his accomplishments as they have come, focused on nurturing his potential in the moment, and not worried too much about what he may or may not be capable of in the future. The truth is that, many of his behaviors & limitations are just plain hard to accept from a big kid. Much more difficult to stomach the judgmental glares from people out in public that don’t stop to consider the possibility that there just may be a REASON why my kid squeals loudly and claps his hands and doesn’t answer when they ask how old he is. Much more difficult to not consider the nuances and logistics of what living with a teenager with special needs, and very likely an adult dependent, will look like for us.

And yet, it is what it is. These teeth will fall out, we will raise our hands in a collective family “YAY!” celebration, the Tooth Fairy will pay a visit to our family bed, those big gawkward teeth will grow in, and Sam will still be our sweet, beautiful boy. My Momma’s heart will weep for just a minute at the loss and what it means, and then I will move on and embrace the change as we march on forward.

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February 1, 2012 - 5:14 pm

Amy Mcmullen - gosh, isn’t it true? we live day to day, eyes on the prize and getting by, and don’t see what’s coming till it’s upon us. i am overwhelmed FOR you, thinking of later chapters, picturing how it will change. still, you’ve laid foundations of honesty and love, friends, and are magically learning from sam and educating us in turn. there is so much good to be had in that. thank you for that sort of inspiring.

February 7, 2012 - 9:33 pm

Lisa Kirkman - Hi…I am Tyler and Jason’s Aunt Lisa. Andy forwarded me your blog as parenting inspiration. I want you to know that you all have inspired me and made a difference in my life. You have my true respect. Keep writing and when you are ready to adventure to Colorado, we’d love to welcome all of you.

February 8, 2012 - 12:40 am

Rob - We love you Amy.
Thank YOU.
– Rob

February 8, 2012 - 12:49 am

Rob - Hi Lisa,
Thanks so much for taking the time to write to us. I’ve known Andy for some time now through the venue I work at (The Goodfoot) and have a great fondness for him & his hard work as a Dad (as well as Angela’s hard work being a Mom!). It’s really flattering to have you compliment us (and humbling). We’re really inspired by everyone who takes the time to read what we’re sharing – so – Thank YOU!
– Rob