Thursday, December 29, 2022

Does Not Make Sense to Me

My adult child who has a disability draws SSI, not the full amount. Even if she did draw the full amount, that is not enough to pay for rent on an apartment or house in the area where we live. Housing. Not enough for housing. What about food, clothes, electricity, transportation, gas, necessities like sanitary napkins, toilet paper, cleaning supplies, soap, shampoo, etc? A state waiver would pay for caregivers if we could find caregivers to hire. She expresses a desire for a part-time job, but there are many complications. First, are her sensory issues, and illness. If a crying child comes within hearing distance, she's done. Finished. She has enough food allergies that most restaurants would not be an option. Autoimmune issues knock hospitals and nursing homes off the list. In the past, she takes a lot longer to recover from an illness than the rest of the family, and she too dysreulated even with a mild cold to be able to work a job those days/weeks. Thus, the list of opportunities grows shorter and shorter. I found a help wanted ad for a greeting card stocker, 20 hours a week, in just two stores, $11 something an hour. Hmmm. She likes to organize, she'd probably be good at this, and I think she'd be able to take a break and go outside if a screaming kid came within earshot. But according to SSI rules, if I understand them correctly, individuals are allowed to earn $65, and then SSI is reduced a dollar for every two dollars earned. She would come out ahead a little bit, in terms of money, but still not enough to live on. I do not understand the concept of reducing the already small SSI in the event the individual gets a $14,000 year job.

Sunday, December 18, 2022

Charcuterie Spreads

Y'all. I have a confession. I think I am the only one in the whole world who thinks this. I do not understand the popularity of the charcuterie board, spread, plate. There. I said it. Deli meat full of nitrates and nitrites, mostly pork, a variety of dry crackers, cheese cubes, olives, y'all, it is a sodium fest, too and (gasp)  I don't think that is attractive to serve. Yes, I'm in the  minority. I'm also Picky Penny. I don't like olives, don't care for most dips. I look at those big spreads and think, "That's a lot of work for something that is gonna send people home hungry."  I attended an event where the host did not have any butcher paper and improvised using solid red gift wrapping paper. Innovative. Actually very pretty. However, the grease from the deli pork pieces seeped onto the paper and it wasn't appetizing and I don't think the gift wrapping paper is food safe. Winter charcuterie boards are interesting with out of season fruit on board, again, not attractive or tasty.

Friday, June 17, 2022

Classic Strep

"CLASSIC STREP". We saw a new doctor today. Private pay. Children with PANS/PANDAS grow up into adults with PANS/PANDAS.

This is what we've been dealing with on and off since MARCH, y'all. Ulcers all over the mouth and throat and tongue for over three months with behavioral symptoms of strep.

You cannot imagine my frustration and anger with mainstream medicine right now, multiple providers (five of them at three facilities). "No need to test again; the first test was negative." No need to test nasal passages or draw titers, even when Mom suspects that this is strep because these are THE behaviors that come with strep. 

Let's try an SSRI for it instead, they said. (poppycock, I say) 

Six weeks or so later, "It's happening again," I say, thought the clinic portal. 

"I'm sorry it's happening again," one nurse replied. 

"Would you like a referral to V?" the other nurse replied 

"Yes. Who there treats this underlying autoimmune issue?" 

 "I don't know anyone who does. You can still try the SSRI" (and ignore the underlying medical condition) 

Here we are AGAIN. More ulcers. More strep behaviors, just in time for an appointment with a specialist who knows autism, PANS, PANDAS, Lyme. Doc got to see it all in person and when he saw the her mouth, first words were, "CLASSIC STREP." Finally. Finally. Someone who gets it. 

Why is mainstream medicine SO. FAR. BEHIND? Why is there no one in the 'fabulous' (sarcasm) teaching hospital who knows this? Why has my kid had to be in pain for so long? Why are they suggesting an SSRI without looking into the underlying illness and autoimmune conditions?


Tuesday, March 15, 2022

Dear Emma Thompson

My daughter who has autism also has had PANS and PANDAS for years. She had it long before we had a name for what it is. If you are not familiar with PANS and PANDAS, in a layman's nutshell, illnesses cause the body to attack itself in the form of inflammation in the basal ganglia, part of the brain. The inflammation causes OCD - for my daughter - repeating intrusive thoughts. My theory is that my daughter must have been flaring when she watched Pixar's "Brave" for the first time. The scene where Elinor throws Merida's bow into the fireplace is intense, and very badly scared my daughter, so much, that during a flare, sees this scene in her mind over and over and over, and feels the emotion of it. We have dealt with it for TEN. LONG. YEARS. We've seen multiple doctors, mainstream and functional/integrative. None of them have been able to stop the flares.

We're battling it again. We've had a rough couple of weeks. My daughter said she wanted to write a letter to Emma Thompson. I said, "Write one. I'll put it on my blog."

Here you go, dear daughter. Here is your letter to #EmmaThompson (and #BrendaChapman)

Dear Emma Thompson: My name is A and let me tell you something. Every since you were in the 2012 Disney/Pixar film, "Brave", as Elinor, I just hate her, because of her actions, her voice when she got angry, and your character threw Merida's bow in the fireplace. Your performance as Elinor scared me for 10 years now. I wish you would write me back and say you are sorry for traumatizing me. Heck, her anger makes me wanna be mean right back at people, like my own mom and dad!

I don't know if an apology from Emma Thompson would actually help, but my daughter thinks it would relieve the intrusive thoughts. 

And now that my daughter is an adult, I suppose the disorder is called Encephalitis, now, and not PANS and PANDAS, although the symptoms are exactly the same. Crossing the age of 18 did not change anything, medically.


Friday, February 18, 2022

Questions - When One Disability is More Important Than Another

Over the past six-ish years, we have encountered a situation multiple times in multiple settings with multiple professionals. And the more I ponder it, the more baffled I am. We are on the verge of abandoning yet another activity because of a peer who is in the activity. 

Why is one disability given priority over another?

My daughter is sound sensitive. She can't help it.

I do wonder, does my child have misophona?

Misophonia is a disorder in which certain sounds trigger emotional or physiological responses that some might perceive as unreasonable given the circumstance. Those who have misophonia might describe it as when a sound “drives you crazy.” Their reactions can range from anger and annoyance to panic and the need to flee. Dec 18, 2022

The ADA does not identify specific disabilities. Rather it defines a disability as a condition that “substantially limits one or more major life activity.” Misophonia definitely meets this criteria. /

She has responded in anger and panic at times. I do not think the term "unreasonable" fits her situation because the sounds she reacts to strongly are annoying and painful.

She carries noise canceling headphones with her, sometimes foam ear plugs (and sometimes wears both at the same time). My daughter also experiences anxiety, sometimes anxiety about past experiences, and I learned a new term, "anticipatory anxiety". Yes, I have witnessed anticipatory anxiety many times. 

There seems to be - from my perspective and many experiences - an unwritten rule that ranks disability challenges. The unwritten rule says that the individual with sound sensitivity is a lower priority than the individual who produces loud noises and the student who is loud always gets to stay and the one who is sound sensitive always has to be the one to leave if headphones do not work in a situation. The resolution is often one-sided.

Background: I homeschooled my daughter and she was not around others with a disability who need higher supports. She was introduced to some higher needs peers the first day of her transition program at the age of 18, where a non-verbal peer who vocalizes painfully loudly was allowed to strike my child three times that first day. Throughout the year, she witnessed this child slapping or attempting to strike the adults while screaming, screeching, moaning in the classroom. Now, when she hears certain vocalizations that remind her of the violent peer, BOOM! she is triggered. There is some trauma for my kid in terms of the vocalizations. I don't know how to undo that. Most of the other peers grew up in a public school setting and dealt on a daily basis with peers who vocalize. They learned somehow to ignore it or were taught to be compliant about not complaining about it. And perhaps my kid is the only one with misophonia.

In the last six-ish years, I have enrolled my daughter in different activities - from public school to private pay activities - where a peer or two in the class were so noisy that my daughter could not cope, even with headphones and earplugs. My daughter and I are told that the noisy, screaming, shrieking, squealing, moaning peers can't help it, their vocalizations are part of their disability, there's nothing much that can be done. 

There is an unspoken message, and that is "He can't help it BUT YOU CAN."

Guess what?!?

The sound sensitive one cannot help it either.

The unspoken message to the sound sensitive one is, "YOU *can* help it, do better," becomes her inner voice. No matter how gently "He can't help it," is spoken, the unspoken part is there. And the unspoken part is *wrong*. She can't help it either.

There is some shame imposed upon her, perhaps unintentional, but it is shame, nontheless, in the "but YOU *can* help it" unspoken message, and the shame makes the events worse. Where is the empathy for my daughter? Empathy is calming, it can diffuse anger and anxiety. Yes, the peer is loud and is interrupting. Someone please agree with her, confirm her discomfort! When the entire group pretends that the vocalizations are not disturbing, it gaslights my kid.

So the default after a bunch of strategies applied to the sound sensitive one, to the one who is not creating a disturbance but instead is being disturbed by the vocalizations of a peer, becomes the sound sensitive one has to leave. A choice, yes, but a forced choice because the staff will not deal with the noisemaker in a way that allows the sound sensitive child to stay and participate.

This sends the unspoken message that something is WRONG with my daughter. Oh, yes, sometimes, the staff members try. I've seen some of them try very hard, one leader worked to try to lessen some of the sounds, even bringing the individual's mother in for some consultation. Ultimately, the siren sound maker didn't stop making those sounds and we left that activity while paying for an activity my child was no longer attending because of a contract.

However, "Try your the headphones" is the main attempt at a remedy. For ONE or occasionally TWO loud peers. Okay. My daughter is willing to try headphones. Headphones go everywhere with us. We use them to get through errands. Errands are fast, we can get out easily, but the headphones are often not enough for an activity with peers that lasts a lot longer than an errand.

When headphones (or headphones AND earplugs at the same time) are not enough during an activity, she is usually given an opportunity to take a break, to leave the activity, a time out - which looks a little like punishment, when she did NOTHING wrong. Neither of the two can help it but the sound sensitive one is singled out for a break. She faces the consequence of leaving the activity when she did nothing to deserve that -- while the individual whose vocalizations are very loud gets to stay. Do the professionals realize what they are behaviorally reinforcing? They send the clear message to my daughter that the adults who are supposed to help her, support her, protect her, while allowing her to participate, cannot be trusted - which sends anxiety soaring. The noise disturbs others, too, but the class members have been groomed over many years to be compliant with pain and torment in the form of excruciating noises, which is a problem. 

Because my daughter's disability is not honored and protected, and hasn't been for many years, when my daughter sees the noisy peer, her anxiety soars because she never knows when the peer is going to sound off and she knows from experience that she will be expected to leave the room or somehow deal with the pain and anxiety the siren noises or screaming or moaning causes.

The history of professionals who let her down is long, where maybe the professionals were caught between a rock and a hard place, but ultimately chose a response that is gaslighting to my kid, a response that does not protect my kid, a response that does not help my kid self advocate. I'm not referring to general classroom noise and chatter. I'm referring to moaning, screaming, shrieking, high pitched vocalizations.

The noise is often ridiculous. Painful. Tormenting. Sometimes not so tormenting or painful, but instead annoying and constant, making it difficult to tune out. Sometimes it is intermittent, and random, like a fire drill, you know it's going to happen, but not when, which fuels anxiety in the sound sensitive individual. But the sounds are acceptable and the sound sensitivity is not - the noisy people don't have to leave, we must try headphones on the sound sensitive person.

But wait - my child's situation is even more complicated. My sound sensitive now-adult child also wears glasses and when outdoors, a hat, (and during COVID, had to wear a mask or shield) adding headphones to all that is a LOT, she is contantly having to adjust the glasses and headphones to keep them in the right place - pretty challenging during an activity. Adjusting glasses and headphones takes a lot of her attention bandwidth and the headphones dampen her ability to hear the leader/teacher and her peers in conversation.

Once the pattern of noise is established, for my child, that person becomes an anxiety trigger, even a fight or flight trigger because that person could begin to sound off at any moment.

Children, babies, toddlers in public are also a trigger, because they could scream at any moment. We deal with this all the time. But we can move to another part of a store and still complete our shopping trip when she cannot leave an activity and still complete that activity at the same time.

Allow me to be absurd for a moment: People would have a fit if I suggested putting a mute or muffler or muzzle on the noisy person, but headphones on the sound sensitive one is considered acceptable. I am suggesting a mute to point out the absurdity, not because I think the vocalizer needs a mute. A mute is not acceptable. But why are headphones acceptable in this situation? If a mute isn't acceptable, headphones are not, either. The noisy person isn't asked to step out, to take a break until he or she can stop disturbing others, no the noisy person gets to stay. The sound sensitive person has to leave. I'm frustrated. I'm tired of it.

Additionally, the parent of the individual who makes excessive, painful noise is behaviorally conditioned that her child will be accommodated, no matter what, and I have been conditioned to have an expectation that my child will not be accommodated.

As I continue to teach my daughter to SELF ADVOCATE, why at the same time are we encouraging her to somehow find a way to deal with the painful situation OR be the one to leave?

I've withdrawn her from a bunch of activities because of ONE or TWO peers, sometimes without a refund because of the policy of the organization running the activity.

Self advocacy is, “Because of my disability, I cannot tolerate his/her high pitched squealing. I deserve access to an activity without being disturbed by the high pitched and unusually loud screams, squeals, shrieks, moans of my peer."

Self advocacy pits the sound sensitive one and her mother against the group leader/teacher and against the parent of the peer who makes the vocalizations. I hate that. I hate confrontation. I hate being at odds with another person. This setup is ridiculous because neither individual can help the disability. These situations are such that one wins, the other loses. And in the past, I have chosen to cower, to give up, rather than try to advocate bigger.

We avoid loud events. My kiddo does not like baseball games, basketball games, all sporting events are simply too loud. Loud music, loud cheers, sometimes angry voices yelling, and we cannot expect there to be no music and we cannot expect thousands of people to be quiet. However, in a small activity, when there are ONE or TWO individuals producing the noise, why can't we expect the noisemakers to leave instead of our leaving?

How do we grow self advocacy skills in a situation like this example, especially when the professionals and adults choose a side and they choose the side of the individual who cannot control his or her vocalizations over the one who cannot control the fact that those vocalizations are extremely painful and upsetting?

Why is the disability of the loud, painfully noisy student more important than the student who is sound sensitive? Why is this a THING? How do we make the disability of the sound sensitivity EQUAL, not LESS THAN, the disability of the one who makes the noises? Or how do we shift the burden of protection to the one who IS NOT CREATING A DISTURBANCE? How do we begin to expect a student to learn restraint over his or her own voice and sounds?

My daughter is a participant in an activity with multiple meeting times and after trying for weeks to avoid the peers whose vocalizations are painful to her, we were given permission to switch to a different meeting time and that was a welcome and much appreciated solution; however, this is the only activity where there is an option to choose different times for the same activity, and the move caused my daughter to have to sacrifice another activity.

A PS: We work on this often. We've done lots of things! I don't know what else to try. We completely avoid "sensory friendly" events because those events tend to be attended by lots of individuals who vocalize in ways that are painful to my daughter. We avoid events that are noisy (examples: sports/concerts). We paid ($$$$$) for several weeks of AIT (Berard). Away from an activity and when my daughter is calm, we collaborate on strategies, ideas that would allow her to remain in the activity. We try to choose activities that allow her lots of space to steer clear of the vocalizer (outdoor activities can be easier as she can stay far away from the vocalizer), we practice ways to say, "You're hurting my ears," or "You're a little too loud." We have taken breaks during an activity and tried to return. At home, we run a fan for white noise and we have a noise machine. I have talked to the doctor about suggestions that we have tried. I have purchased multiple brands of very expensive specially made ear plugs that are supposed to help with sound sensitivity - so far, all money wasted. They don't help. She takes headphones and ear plugs everywhere for the random screaming baby or toddler in a store where exposure is brief. (Yes, there have been times when we've had to leave a store without completing our errand when a mother would not remove a hysterical child.) For group activities, I try to arrive a little bit early so that as people arrive, the noise gradually increases around her, as opposed to her walking into an already loud room. On the rare opportunities to see a movie in a theater, we wait until the popularity has worn off and attend in an almost empty theater and I ask the other audience members if I can ask the theater to turn down the volume. They have always given me an enthusiastic, YES, and the movie theater staff have always lowered the volume for us.

Remember in old cartoons, a storyline about an old western, where someone with a gun shoots at the feet of another, making the victim dance to avoid bullets in his feet? Well, I feel like the person dancing, trying to avoid the bullets. We dance SO HARD to try to make it work - but I'm out of ideas.

I don't want to leave activities any more for one or two peers. I want the loud peers to be the ones to leave. I want my child's disability to be a priority.

Thursday, November 4, 2021


My now adult daughter - the one with autism + - and I attended a funeral visitation recently. A teacher of my daughter had lost a precious family member, and we went to pay our respects.

There was a line and we joined the back of it to wait our turn. One gentleman arrived behind us, then another. The two men began to chat. Loudly. One said he was a chemistry teacher at the high school. They established some connections and talked about all sorts of things. Loudly. At one point, my daughter whispered very quietly in my ear that those two men sure did talk a lot. Yes, they sure did.

One explained that he did not know the deceased, but that he worked at the same school with the daughter of the deceased, the special education teacher. And LOUDLY, he told the other man he could not do what that teacher does, work with the special needs students. She has a hard job, he told the other man.That job can be difficult.

At a visitation where one of the immediate family members is a special education teacher, don't you think there will be special education students in the line? Do you think an individual with a disability may not want to hear you talk about how difficult they are and how you could never do that? Another family joined the back of the line behind the two men, this family had with them a young adult in a wheelchair, and my guess was that was another student of the teacher we were all there to support.

I wanted to stomp on his foot and hiss, "SHUT. UP. NOW." but I did not. 

Would you believe he told his story to someone ELSE? Yes, loudly.

A good reminder for me to be careful what I am saying in public. You never know who might be within listening range.

Wednesday, December 12, 2018

Oh Christmas Tree

Guess who still decorates the tree without glass ornaments? When the children were little, it was a safety issue. I blogged about my CHRISTmas tree here.

I pack our tree with items that represent our faith and our special interests. We have musical instruments for the musicians in the family, baseball themed ornaments for our baseball player and fan, ice skates for our skater, and this year, I found butterflies, dragonflies, and hummingbirds to attach to our tree, for me, because I enjoy photographing those three flying creatures.

What do you put upon your tree or trees?

Tuesday, December 11, 2018

Disability Advocacy for an Adult

The world of adults who have a documented disability is a new world to me, and in 2018, I think there would be more roads paved into the world. I am discovering it is a new circus, new monkeys, and just as frustrating and time consuming as the world of disability before adulthood. Here's what I'm dealing with this month.

My adult who has a disability is served by a waiver in our state. Our waiver support coordinator suggested I purchase a membership to some activity (museum, zoo) for community integration, BUT the waiver will pay for ONLY the individual with a disability.

WAIT, WHAT? My child canNOT access a zoo or museum without a caregiver. My child does not drive, cannot be left alone. The waiver won't reimburse a dual membership (individual + guest). The venue won't allow me to purchase a dual membership while providing me me a receipt for an individual membership to submit to the waiver people for reimbursement of the individual part of the membership. Additionally, both our support coordinator and other parents I've connected with say the VENUE is responsible for allowing the caregiver admittance FREE with the individual w/ a disability as an ADA accommodation. (And yes, I found a federal ruling about that.

The parents and the support coordinator say that the caregiver is expected to explain at every visit that he/she is the caregiver and should not be charged admission. Parents say sometimes the venue is understanding, sometimes it is not. I want certainty, not uncertainty.

Why isn't there an option for the parent to submit documentation of a disability for a dual (individual + caregiver) membership at the price of an individual?  I don't know.

In our former state (we moved seven years ago), I asked the zoo there about a caregiver on our membership, they added a special symbol to our membership card that allowed a caregiver to bring my daughter to the zoo or to accompany us as a family. No extra charge. They didn't hesitate. Easy peasy.

In contrast, a venue here says they don't have a mechanism to allow a caregiver admittance with the individual with a disability. We've exchanged several emails.

"Why can't you create an "Individual + caregiver" membership category?"

"Because we are limited to the number of categories we can offer"  
Why can't you offer what the venue in the other state offered? A symbol on the card that allows a caregiver ticket to be printed with each visit? 
"...our cards have a maximum party size attached to them and the SINGLE would only admit 1 at the scanning station, the caregiver would need a ticket to be scanned in each time or be on the membership card [GUEST], otherwise our gate staff have no way to count the attendance."
The rep from the venue asked for a scan of the letter that caregivers present at the ticket booth, they'll accommodate my child with a dual membership at the cost of an individual using some complicated algorithm of discounts. LETTER? I head over to a mom's group and ask them - they have never heard of such a caregiver letter.

So, I wrote a simple statement, attached it to an email, the rep at the venue says, no, that's not official. She wants to know if the support coordinator has an official letter. So, I email him. And no, he's never written such a letter. He tells me to just pay for the dual and he'll try to get the individual portion covered. He misses the point entirely. While we as her parents are able to cover the difference today, at some point, my child may NOT be ABLE to cover the difference for a dual membership and some families can't cover the extra for the dual now, and we need a policy NOW that gives individuals in her situation a way to access both community integration funds AND a community integration activity.

Adults who have a documented disability and funding for community integration need a dual membership option to access a zoo or museum that allows a caregiver that is covered by the waiver or other services that are meant for community integration.

The rules and red tape are ridiculous. This stuff takes up time and energy. We should be able to handle this in one phone call or email, but apparently we are years away from that level of understanding and preparation for our adult children who are disabled and require a caregiver.

The GOOD news is the venue is going to do what it is supposed to do and at some point, soon, I hope, and before the end of the year, I hope, my adult kid will have a membership to a beloved venue that allows a caregiver to accompany as an accommodation.

Friday, July 13, 2018

No, Thank You (or just "NO")

Dear Multi Level Marketing People: 


Some of you MLMs are too aggressive. Strangers to me with whom I share mutual friends try to follow me on social media. I peek at your page to see exactly who you are, and see post after post of product. NO. I don't want you to follow me and I don't want to follow you.

Please no cold calls from strangers. This one came today in a Facebook message request:
Hi Penny! How are you?? I totally realize you don't know me, but we have several friends in common at X High like XX and Mr. X. I have or I guess had a student there - Ben just graduated!! 🙂 I am reaching out to you today in hopes that I can share a bit of my journey with you since I launched my business 2 years ago. The blessings have been abundant in so many areas of my life, as in life changing personal growth, more time and financial freedom and so many enriching relationships!!! My heart and life have been so opened to the desire of wanting to help anyone I can through this business! No pressure at all, but would you be open to just chatting and hearing my story to see if this could be a life changing journey for you or maybe even someone you know as well? 💛 Thanks !!
This happens to be one of the businesses I invited to donate to a silent auction charity fundraiser. What did I get? SILENCE for our silent auction. Your company did not earn any points with me for that.

I'm lonely. At a time in my life when I should have a group of girlfriends who have my back, I have none. I moved to a new town as I was having children and then one regressed into the world of autism. Making friends is hard for a special needs mom. Then we moved again. I moved to this town seven years ago and am a 24/7 caregiver to an individual on the autism spectrum. I'd love to cultivate some friendships. I'd love to have a posse. I'd love to have a girlfriend group to do things with. 

But not for the price of becoming the downline to a stranger who uses friends to cold call people. 

A facebook friend of mine commented:
"How disappointing when you would like human contact but are considered a mere sales opportunity. It isn't about the words. It's about a salesperson taking advantage of another person's good manners in order to make a pitch."

If you have the desire to help me, get to know our family. Offer to autism-sit with our teen so my husband and I can have a date night. 

You need another downline to enrich your pockets. You're not looking to be a helper to me or my family. 

Your social media profile screams Rodan and Fields.

Hey, Stranger: Do not interrupt my day to try to get me to join your MLM.  

My response today was, "No thank you". I don't know why I feel the need to be polite. What I meant was "NO." 


Wednesday, December 6, 2017

Different. But Equal

We arrived at the rec center early and opted to sit in the car for a few minutes to kill time there. I watched people enter and exit the building. The front door is a long way from the rec center. I am envious of women who enter and exit together, side by side, laughing, chatting, wearing exercise clothing. I wish I had a friend here to meet at the gym. We are too new here; I haven’t had time and opportunity to grow friendships.

I saw two men walking the long sidewalk, one behind the other. Their silhouettes provided information. I am an avid reader of non-verbal information. The young man in front was taller and younger, my guess, around 20 years old. The man in back, two or more feet shorter, was older; his features more mature, and his gait told me he has some special needs. From a distance, I saw Down Syndrome.

The contrasts were striking. Not only were they separated by at least two feet in height, one walked three or four feet behind the other. They walked the long sidewalk to the front door to the rec center so differently than all of the other couples I’d seen.

A few minutes passed and my daughter and I headed into the rec center. My homeschooler was taking a class with other homeschoolers. I escorted her to her classroom and found a chair in the lobby and prepared to read books from my tablet for the hour and a half.

And I watched people walk by. People who arrived together – to exercise together – came in side-by-side, just as they had on the sidewalk.

Those two young men walked through the lobby four times while I was sitting there. Every single time, the shorter, older man, the one with Down Syndrome, trotted three or four feet behind the taller, younger man. Not once were they side by side. Not once did their body language say, “We are together.” To me, it said, “I let him come with me.” What I saw was "you can't keep up with me so I won't expect it". One was actively going to the gym; the other, passively being allowed to come along. One trip past me, the man in back was trying to talk to the man in front. Right in front of me, the younger man pulled an earbud out of his ear and turned around to hear what the man behind him was saying. I had not noticed the iPod until then. The younger man in front was shutting everyone out – even the person he’d brought with him – to give his attention to whatever was on that iPod.

The contrasts continued to weigh on my mind. Women entering the facility together walked side-by-side. Equals, even when not close in age. Men who entered as pairs also entered side-by-side. Equals. Mixed gender couples – you guessed it – side by side. Chatting, staying alongside one another, moving together.

I began to wonder who the two young men are. Brothers, I guessed, with the neurotypically developing younger one bringing the older brother with Down Syndrome on his trip to the rec center to work out. Nothing in their body language, nothing in their non-verbal communication said “equals”. Maybe the taller, younger young man is a caretaker or respite worker.

My mind began to wonder. Is this the way we treat my child who is developmentally delayed and on the autism spectrum? When we walk from parking lot to building, do I expect her to dutifully trot behind me? Or do I bring her alongside me, a partner, an active participant? And how do her siblings treat her? Side-by-side? One of us? Or separate, “allowing” her to come along, follow along?

 I think I know the answer to this. We’ve been working on non-verbal coordination and co-regulation for too long. But I want to see. I want to observe myself with her, because, as I watched the two young men, so un-equal, I want to be intentional to make sure my daughter is included, is equal, is walking beside me, beside us. Her job is not to trot dutifully behind. Her job is being a part of. An important part of.

Too many times I’ve stopped in a parking lot, turned around to wait for her, silently, to allow her to notice that we were having a breakdown in interaction, to allow her to realize that she’d fallen behind. I waited silently in non-verbal expectation that she join me, a message that she is an active participant and equal shopping partner with me. Too many times, I’ve stopped at waited during times when she went ahead of me, while I waited for her to shift her own attention and notice that we were no longer together, to wait for her to come back to where I was and join me.

But I hadn’t assessed us lately. I had not observed us lately. How am I using myself to give her opportunities to grow and to experience how-people-are? I want to make something clear. I am not referring to “training” the individual with a developmental disability. It's not "training" - it's offering opportunities. It involves the neurotypical individual slowing down, making room for, EXPECTING the individual w/ DS or autism or whatever to "come alongside", and making themselves "possible" for that to happen. (“Possible” is a term that Dr James D MacDonald of Communicating Partners uses.)

Our kids learn through experience - they need practice through actual co-regulating and coordinating, NOT through prompting, telling, instructing or training. Homeschooling gives us more time with children with special needs to practice “being with”, “being a part of” if we have “being with” on our radar.

When I saw the young men at the rec center, two things happened. I began to self-assess and make plans to keep this concept toward the top of our objective list and I began to compose a blog post in my mind, so that I can share this concept with others. Being intentional to include our kids with special needs means including them in the little moments, too. I wanted to remind you of that. And remind me, too.
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