A is for Aides :2020 Autism Acceptance Month

10 years. 23 women. One little boy.

For the last decade, A2 ages while his aides do not. Time stands still as they enter our lives at 20 and exit at 22 again and again and again. All the while, A2 ‘s clock continues to tick away putting him closer in age to the next new soon-to-be-best-friend to come on board. He is still little and adorable and fun loving, but a teenager nevertheless. A teenager with care needs that are still very much in line with what they were when our very first 20 year old walked through the front door.

Each year that passes, A2 is more acutely aware and uncomfortable with this fact on a few levels, which in turn makes me uncomfortable with the skeleton crew of potential candidates I must independently identify, recruit, interview and hire folks with little to no experience with Autism. Every year I wonder if I should just provide all of his care and community support myself. I have been faced with this challenge for a year here and there at a time while also trying to find balance with my work schedule. In the long run, that is actually far less stressful and overwhelming (albeit, unpaid) than the Groundhog Day treadmill year after year of the anxiety of locating the right person,the training, the supervision, the getting over the behavioral hump, the getting used to having a stranger in our home and trusting they keep our personal life confidential/my child safe-always and no matter what, and the anticipation over A2 ‘s grief and lack of ability to process that with us when they leave our world.

And then I remember.

I remember the laughter and energy and patience for a boy who deserves nothing less on days when my own dark places pull those things under the blanket with me.

I remember new words and habits and skills that I know I didn’t teach.

I remember roller coaster riding and sledding and jumping into cold pools-things I wouldn’t dream of trying with him (or without him, actually)

I remember relief watching a young A1 be welcomed in to play, given the same attention and love by those who saw that he was here too and just as worthy of the special time his brother deserved, even though no one specifically told them to do so.

I remember birthday presents, phone calls and gifts, just because. I remember off the clock offers of babysitting just to give me and Mr. ATeam a date after not having one for over a year.

I remember A2’s uncanny ability to sense the unspoken leave-at-the-door moments that would go past my radar until I saw his care and loving behaviors.

I remember the phone calls from new professionals telling me about a challenge they faced in their new career they knew how to handle from what they learned working with us

I remember my beautiful boy has no people who know his life inside and out, backward and forward other than me and his dad. With exception of the select few who come here to work under a supervisor who often forgets to show a soft side or appreciation and yet they choose to stay here for a year or longer.

I find I am just as appreciative of this village we create year after year as I was in 2015. It looks different today. I am more tired, less patient with the learning curve and more concerned about the days and years ahead since I now have the wisdom of just how fleeting they are as we barrel toward the thing-that-keeps-me-up-at-night. However, I have had the opportunity to see the future of these college co-eds who come in and out of our life in the blink of an eye. I know special education teachers, speech and language pathologists, occupational therapists, RNs, Psychologists, Social Workers, Disability Advocates, Trauma specialists, Physicians. I see mothers and wives. I see women who seamlessly moved to their next stage in life from A2 better equipped to understand what Autism looks like from the inside and hope it has helped fast track their perspectives as helpers

I sure know that if that is true, A2’s purpose is far greater than I could have ever imagined and I just know if he understands that, it would only contribute to the joy he has for the things we all take for granted.

A is for Aides: 2015 Autism Awareness Month

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

A is for Aides: 2020 Autism Acceptance Month

Autism Awareness Month 2015: A is for Aides

Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

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

FullSizeRender(4)

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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Autism Acceptance Month 2019: C is for Community, Comradery and Common Ground

Autism Acceptance Month 2019: C is for Community, Comradery and Common Ground

These words resonate for my own beautiful boy. My own beautiful family. I am an accidental blogger. There are many reasons I am out here….none of which have come to fruition (yet). A morphing book for a few years and when people ask, they are surprised to learn it has nothing to do with me or my child directly. I kept learning how I should be out there to those who would be interested in the content.

But, you see, this is still all very weird to me.

I didn’t want to write on social media because the dissent and judgement within and among communities…the ones I believed were the same, were awful. It seemed to me everyone has ill intention, everyone is ignorant. I have enough drama, thank you very much. Why would I invite more? By not writing at all meant not sharing it, which meant self care.

I didn’t want to write because even in my personal life, very few people get to know my details. Talking and sharing vs. relating and sharing are different. People tend to fade to black in a cinematically predictable way when sometimes those things are just way bigger than one can make them look while out and about buying the groceries and weed killer. Those melodramas occupy enough space, thank you very much. Why would I drag people into that when we maintain so well over here? By not writing at all meant protecting thoughts and ideas which are uncomfortable or inconvenient to others. Ultimately for me too since disappointment tends to hit me like a wrecking ball.

In the end, regardless of where we know each other or how, I am fairly certain, we are looking for the same end result. By not writing, I did not have to debate this.

Having perspective is a little like breathing. We all do it and at the pace comfortable for living to the best of our ability. That breath adapts to our situation even when it changes. Sometimes it is even vastly different than our original irrefutable pace. When I walk up the steps to my room at home, I find myself stopping and catching my breath 3 or 4 steps before the top when just 4 years ago I could perform literal circus tricks in a hot yoga studio.
And while my Lululemon tush wouldn’t have said it out loud, it may have not really understood what it meant to need rest before reaching the top of a staircase, because it never had to before. I may have had recommendations on the misguided beliefs about why it meandered its way up at that speed in the first place. And I might have been wrong-ish, but a vague foundation of knowing why. It didn’t completely make me wrong any more than it also didn’t make me wrong for now knowing I now need to rest for a moment on the banister.

The love for our children. The love for ourselves and the life it seems we thought they should live with us. The love for ourselves as individuals doing the best we can and trying to find others who might say the same. We all want the same thing and it seems to always be based in love and dignity and preservation. Even when from a different angle, that does not appear to be the case.

Before deciding how someone else’s world is not just wrong and different, but destructive, I implore you to stop on the 3rd or 4th step up on the way to your room to take a breath first and then decide how to describe how to better take that breath.

It is easy to say this perspective is not about privilege when we have the option of discussing it in the first place. It is easy to say it is not about privilege when we are groundskeepers and spectators of those we are discussing. If we have love in our hearts, perhaps the common ground in our community is to say we are trying to champion and triumph the same fights. And knowing that is when I decided perhaps I should write.

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive for Kids With Invisible Disability

halloween
The Grim Reaper takes a break to ensure his safety while the ill-prepared firefighter keeps his distance just in case

(originally posted 10/2015)

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents the goal was for all children to be included, be safe and have fun. I was perplexed when one parent refused to change a cookie decorating idea which did not meet these basic criteria.

Kids who can’t make or eat them can at least enjoy them for how cute they are!”

In what I believed was a teachable moment, I reminded her this still excluded a fifth of the class and also created a potentially dangerous situation. This parent became so incensed that she quit the committee. While I still get as excited about Halloween as the next guy, I was horrified as one of those children was mine.

Another parent was willing to not only exclude him, but risk his safety because she was so excited about her adorable cookie project.

Halloween has become the holiday where those children with differences become the most exposed and have the potential to be the most left out. The numbers of children with food allergies and other differences have risen sharply since I was a child. As a parent with kids with food issues and also autism, it took me many years to figure out ways how to adapt the most super-fun holiday so it was still fun. Turns out, there are lots of ways to do this both as parents and as community members.

Here are some of the top ideas for the “BIG 3” to make Halloween still the coolest holiday ever

1. FOOD ALLERGIES:

a. PARENTS: Sort out the candy with your child to teach his what is ok to eat. Have the “SWITCH WITCH” visit later that night and exchange that bag of candy full of offending allergens with a present. Your child will be thrilled to have the best of both worlds. And hey, there is no rule that says the switch witch can’t give you that bag to stash away and secretly eat after the kids are asleep.
b. SUPPORTERS:  If you paint a pumpkin teal and have it on your front porch it will alert parents of kids with food allergies that you have an allergen alternative available. If you are planning a class party, ASK about allergens—be sure to ask about brand specifics and preparation—that can all play a role in safety. Please remember what it would be like to be 8 years old where everyone gets to eat really cool looking cupcakes except for you. If that were easy to do, none of us would ever be on a diet. The willpower of a child with a food allergy is like nothing most of us can ever understand.

2. SENSORY DIFFERENCES

a. PARENTS: Respect your child’s sensory difference. If noise is an issue, avoid those homes that go all out for Halloween. Your child might be in for a “jump scare” that will end his evening of fun. Costumes are not always made out of the finest of materials. Have him choose his own and try a number of options until one feels right. Contact your local support groups for special needs—there may be sensitive Trunk or Treat nights available which may suit your child much better.
b. SUPPORTERS: Teachers and room parents—if you have children with special needs in your class, tone down the scary a bit. Spooky music should not be on full blast and the mulling around of 25 kids in costume might be disorienting. Have a quiet space outside of the classroom where the child knows he can go to escape if overwhelmed. And for Pete’s sake NO BALLOON POPPING ACTIVITIES OR STROBE LIGHTS!

3. AUTISM

a. PARENTS: Create visuals to help your child understand what to expect at school parties or trick or treat. Try on the costume ahead of time. If your child does not want to participate in Halloween festivities, don’t force them. Throw a small party at your house with old school fun and invite 2 or 3 children he knows for trick or treating. Stick to familiar neighbors homes and buddy up with a child who can model. Sometimes “just a hat” IS a costume with enough thinking on the fly.

Freddie Krueger
Freddy Krueger as a child…before all the drama. He just wanted to feed everyone cereal and soup.

b. SUPPORTERS: If a child does not say “trick or treat” or “ thank-you” he may not be being rude. He may not be able to speak or fully understand what is expected of him. Same goes for a child who appears too large or too old for trick or treating. If a child grabs a handful of candy or doesn’t seem to know what to do when you hold the bowl out, give them a prompt of what to do or physically help them. Their fine motor skills may be impaired and the ability to just pick one or two candies from a dish might be difficult. Still compliment an aspect of their costume even if it seems incomplete. This is still their Halloween too!

The anticipation of Halloween is still timeless. As a parent, I find myself still caught up in creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Harry Potters who could just very likely just be the same child over and over again capitalizing on those homes with full sized candy bars.

Those of us who try to make our kids feel included no matter what can get very good at scooping up the world around, tying it in a different bow and re-presenting it to our kids and Halloween is no different.  With the help of our community, little tweaks can make all the difference between Halloween being fun or being truly scary.

#autism, #halloweenparties, #halloween, #sensoryprocessingdisorder, #PTO, #specialeducation, #community, #inclusion #dignity #parenting #foodallergies #celiacdisease #specialneeds

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…..