The Tail Wagging the Dog: Tales of a Therapy Dog by a Bone Tired Mom

Happy National Dog Day! (And Happy 6th birthday to our Wally-Woo…King of all Dogs. Master of Me). What would we do without you?

Running through Water

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Originally Published as The Tail Wagging the Dog 9/2015

Our dog is playful and fun and sweet and well behaved.

Until he is not.

And then, he is a bit of a sonofabitch.

And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog.

The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.

These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea…

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At The End Of The Day….

I was in a research study recently involving blogging, deciding upon content, deciding upon platform, media, etc. It truly was an interesting experience–I guess no one ever directly asked me to tell my story in such a way before. While they interviewed over a dozen already, many of which where “mom bloggers”, I was the only one interviewed who addressed experiences as a family living with disability.

Their takeaway they volunteered to share with me? Their experience with other parent bloggers did not include the same judicious protection of content/overcontemplation of concern regarding the forms of dignity I discussed, nor did it involve the level of scrutiny that dug as deep as our level can go. And yes, they do blame their kids for tough days or recognize the universal struggles in a laughable or relatable way and are rewarded for that relatablity on social media. No one else struggled in that balance the way we do.

In our world, there is a fine line which moves it’s position depending on who you are talking to. We have a job as family caregivers of disability to be relatable advocates who set the bar for how we and our kids are perceived by the rest of the world. And unfortunately, I do believe it can be at the expense of self care or which ultimately affects they way we cope within our family systems for the benefit of our charge. We are held to a much higher standard out there in cyberworld under much more challenging circumstances than other parents. I forgot about this piece I wrote a few years ago, but it was on a day I had a similar epiphany at the end of a long, hot summer. Sometimes, I want to say funny things about being a mom too. And yep…sometimes I am selfish.

Running through Water

bunny hillThere are some days that my heart breaks selfishly a bit.

Days like today.

As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.

Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things…

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Autism and A Gun By Any Other Name

I vowed to share this every time there was a mass shooting. But since writing this article, there have been over 800.

Not 800 people. 800 instances of someone taking a gun somewhere and there were 4 or more casualties.

My child can’t process what he knows, fears or even experiences with me without any nuance. This creates a different level of parental paranoia over his safety in which to be judged. He will never, ever, ever be the “good guy with a gun”–the only argument–and a wildly circular one at that, about how to fix this problem.
None of this is ok for any of us. Autism or not.

Running through Water

img_4970My brother and I were sitting on the couch chatting about politics last winter when I showed him a segment from the Daily Show.  It was a humor bit about calling a Wyoming elementary school to find out if they had a gun in the event of grizzlies. There was a laugh track and a brief photo of a gun, so it was odd to me when A2 gasped loudly, stood up from the couch waving his hands and both tearfully and fearfully begging, “No gun!  No! Shoot, no!”

We are not hunters nor are we gun enthusiasts and neither are my friends. As far as I know, A2 has never seen a gun in person or on TV, given 100% of his viewing includes Barney, The Wiggles and NBA.  He has never heard a gun shot. Neither he nor his brother ever pretended things were guns.  He has…

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Yes, My Disabled Child Has Chores

Many years ago, one of our first home providers was working with another family who had an older teenager. The provider and the client were only a couple years apart in age. (Don’t worry, -the provider maintained confidentiality the whole time!).

One day, I asked what kinds of things she did in her job with the client, to which she answered,

“Mostly, I help her do chores. There. Are. So. Many.

Given A2 was only about 4 years old at the time, I was simply curious about what life at home with a teenager with a disability would look like without actually considering what life with MY kid as a teenager would look like. We didn’t know our own long and winding road at that point, of course my child would have chores! Didn’t the provider have chores? (As it turns out, possibly not, since knowing far more teenagers now that my kids are teenagers themselves–this parenting philosophy I have might be a bit of a new millennial enigma.)

What happens if a teenager doesn’t have tons of independent leisure skills and has difficulty with self-direction? Do we still teach them how to play with toys? No. If they have not enjoyed this activity as a younger child, then probably not.

Do we leave them alone to wander the house with their iPad? Well…yeah…admittedly sometimes. Especially if they enjoy doing that.

Do we plan on living forever to take care of ALL their needs? Yes, yes we do, but until we figure out an actual way to do that, that is not an option.

The most basic of basic skills must be taught to A2 in an explicit manner. He learns all sorts of things, just like everyone else, but at a snails pace. By not teaching him how to care for his surroundings and belongings, I would be stealing from his adulthood to bank roll a leisurely adolescence. Those processes start NOW so he has a chance for a modicum of independence, the ability to have options and choices and self-determination as an adult. Learning to fold a washcloth may take a typical child 20 minutes to learn and an hour to master. The same washcloth skill might take a year to learn and 3 years to master. Really.

At 14 years old, he is in his evening of the day–the last leg of time being on his side before he is an adult.

A schedule that includes daily expectations gives A2 a sense of peace because he understands how his time will be filled. This summer, with a skeleton crew of help, Momma has been on the case to level up on these skills, scaffold independence and watch him enjoy and take pride in these “activities”. He verbally perseverates less. He comes to me beaming and says things like “Wook! Do it all by yourself!” as he surprises me with a made bed or silverware put in the proper drawers. He is generally, well….happier with chores.

Chores a narrative of dignity and self determination.

Caring for our surroundings gives us a sense of control, a sense of ownership, a sense of responsibility and yes, ultimately a sense of community. If he has to do his chores just like everyone else in the house (ok…maybe not just like everyone else…he actually does his much better many times than his brother!!), I am sending him the message, “You matter as much as your brother and are an equal member of this family” and I am showing his brother equity and fairness by saying, “We are all capable of contributing in the ways we can to this household–A2 is no different”.

I am not a mean mom (most of the time). I like to think of myself as the same kind of mom who makes her sick kid take icky medicine when he doesn’t want to, knowing it will make him feel much better. Not giving the medication makes me feel better because it is easier and I don’t have to see him cry. At least in the moment.

Chores are a pain in the butt. I DEFINITELY have chores I will still whine through, procrastinate doing or forgo altogether. While being an extremely Type A personality and capable of high levels of organization, I am also extremely messy and it happens FAST! I do remember how this unfortunate dichotomy affected college room mates, though at the time, I absolutely did not see the impact. I had to learn that the hard way.

One of my current chores is digging up the patience and consistency to make sure I am teaching A2 how to put his plate in the sink, start his laundry, or wipe down the counter. These tasks are the insurance plan for a future that probably will not include me. As scary as that is to consider, I certainly hope one day it is because he looks at me and in the most apraxic adult way possible says,

“Mom, I don’t want to live with you and Dad anymore. Don’t worry, I have already cleaned up my room and packed my suitcase.”

Moving Forward on Parental Instinct for Your Child with Special Needs

I posted this 5-Minutes-In-The-Water video about parental instinct on my social media pages back in May.  It is time to talk about it again as a teaser to introduce you all to something new we will be doing with A2, since it looks like it really, really is going to happen.

A2 on paper looks very cognitively, socially and intellectually impaired. A2 in person, looks like the prom king. He is adorable, social, friendly and seems to understand ways of the world which elude the rest of us.
My ultimate goal is for him to be happy, as independent as he can be and to rise to his highest potential to be a contributing citizen. Just like most people want for their child regardless of circumstance, right?
The thing is, he has to be able to learn. He can sit still long enough to learn. He is compliant and yet his learning is minimal, basic and cannot seem to transcend across settings, losing learning over time. If something is being reinforced at school, it is unlikely I will see him do it at home. Such is the nature of his apraxia and autism.
Yet I never had the sense that meant he couldn’t learn.
It just meant we were not teaching him in a meaningful way. We weren’t tracking where he learned the best and how (except for once circumstance…and it literally became the thing he could do well everywhere!).  I found it odd that I had to convey the concept of generalization across settings. It was interpreted, “He can do it with Mrs. X in the resource room, gym and speech room”. My point was that if he couldn’t do these things at home or in the community, it didn’t matter.
It would be like saying I was fluent in Japanese, but only when I was in my kitchen and only when my one neighbor came over. Would it matter if I couldn’t speak it in any other circumstance?
However, last school year, the behavior support person in my school district spoke a bit about a ‘newer’ program called PEAK Relational Training System. She described what I had been trying to convey for years about how I think A2 learns and how to track this through cumulative data collection across multiple settings. I hopped a plane to the west coast and got trained for a Level 1 certification.
Being I have been the only consistent “team member” in A2’s entire life, case managing ALL OF THE THINGS educational, therapeutic, medical, religious and social…coordinating consistency, training, communicating across all settings.  And like everything else, I can go figure out the best thing in the world, but unless I have a dedicated and well trained home team, have education professionals who are critically thinking , while also making them believe I need to play a tighter role and having that happen ALL AT THE SAME TIME, well, it is like waiting for a Super Moon on a Leap Year before the Jubilee.
So I spend most of the time doing a very, very crappy job for my child, or at least feeling that way because I cannot do any of this if even one element is missing. Sometimes that element is me–thus my hypervigilence in learning whatever I can to help. What I don’t know, I don’t know, and I am the physical consistency for him.
And here we are.
All the elements are in place, at least for the moment.  He has been assessed and we discussed preliminary plans. Watching the behavior person’s eyes light and hearing her espouse the same mantras about A2’s ability with the right programming along with her sense of urgency to get moving has sparked a motivation I had forgotten when it comes to parental instinct. So, I move forward with cautious optimism. Stay tuned…..