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Hair on Fire, Moving on

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Our (special needs) families sometime endure extra heartbreak, when we don’t expect more. It’s that “out-of-the-blue” part, the suddenness, that hurts most. Have you had a time when in spite of your best efforts, things fall harder, cut deeper into your soul?

Ponder when it is time to declare victory and depart the field. Yet at the same time, let us continue always to “Look for the Helpers” (Fred Rogers) and hold our peace. 

Only God can make some things right. I am not allowed to judge … there’s a verse for that. And if I didn’t have faith, I do not know how I would cope. Over the years, I have ranted at God a few times since our diagnoses. Recently, it’s more a banter. I am guessing that’s a good thing.

I have shared freely and openly about our many interventions,
our highs, our lows. My intention is to share so our kids can earn a better adult life. So,
May you and your loved ones live well. 
May your pain heal,
May your tears dry.
May your spirit rise and laugh again.
May you do your best and when that isn’t enough,
May you walk away with your head up and your heart forward.
May your scars help others.
May you save your energy for those who matter.

Next, please. https://voyagehouston.com/interview/daily-inspiration-meet-gayle-y-fisher/?fbclid=IwZXh0bgNhZW0CMTEAAR2XPnCK-elJhSpUvp4HZES4cUxepoq3F4adR1M0ulLaKBTyJWW4g_9z_jQ_aem_AZ1JcRbUiCy5Ez15wNdJA_LiP9NzDWZa4N1wBIE4iJ7L3VCaNIf4yCjx8O5YLiD5tU9MMympxOgYE5prZ9Qq5Btv

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The Transition Game, One Version

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During COVID-19, there was clemency toward Medicaid coverage for those with disabilities, including neurodiverse and developmentally-delayed children. Coverage was then dropped (I have heard 70%). We are one of those families. Are you?

He was dropped off the Texas Home Living interest list where he was receiving services, on it since age two. John had fallen from Medicaid grace because his dad died, Social Security was informed, Survivorship kicked in. Mom then appealed twice and was denied twice. It was the Survivorship funds that disqualified him from Medicaid and his LIDDA relationship. (He’s now back on that interest list, at about 115,873, starting over. )

He just turned 18, early childhood is over and the Transition Game is fully here. Last month, Thanksgiving 2024, we were out of state, with John suddenly requiring emergency surgery. Thankfully, he has an AETNA policy, a self-pay, COBRA-group conversion from his dad’s life. His only medical insurance.

Complicating things is the SSA (Social Security Admin.) and HHSD (Health and Human Services of Texas) don’t talk, don’t seem to have any coordination. This is not so good for families. Mom (with the OK from the LIDDA) chose to wait until his 18th birthday to re-try to help him re-file for the Texas Home Living Waiver interest list (he went from “got it” to 115,873) and Medicaid insurance coverage.  

Each family’s version of transition can be a maddening process.  Our personal efforts toward the SSA and the HHSC, with the help of the LIDDA have no result yet. I have been wary to call SSA and HHSC. That, of course, is counter-productive and won’t help my son. So I dial the numbers, prepared to patiently tell his story to each helper to whom I am passed. I take thorough notes with lots of details. After each phone call (never less than 1 hour in length each), I recap all the items in a punch-list letter back to them, keeping a copy myself. (I am glad to share any samples with you if you need.) (Also look into programs MEPD, MCPW, Long-term Disabled and MSP.) Be kind and patient, my advice. I have found it really pays dividends.

So when we say “Transition”, there is a universe of tasks of which parents are advised. (See this link for more Transition info.) Also a podcast.

One of these things to get done is the FSIQ (Full Scale Intelligence Quotient), done by a doctor, physician and/or the LIDDA.

Another task in the timeline is the the executed SSA-1372-BK done by the school (Local Educational Authority, LEA) diagnostician declaring your child will continue in public school past their 18th birthday and then forwarded to the SSA by mail/fax. Tangled up in that is the application to the SSA to do an evaluation (ours was DAC). My experience is that is processed by phone. Don’t make my mistake of going in. Anyone who tells you to just go in is wasting your time. You will want a phone appointment with a disability specialist at your local SSA.

I suggest you ask for confirmation of instructions in writing. I had prepared a cover letter with John’s priorities, and did ask them to make a copy of my letter (punch list). She said he didn’t yet have a disability folder for uploads. Digital uploads were predicted, but we ended up with the LIDDA faxing a monster 2-part digital file attachment on a 20-page application. Also, the SSA told us we would need to sort out with the LIDDA issues with them, it was not the SSA’s problem.

Still in School? Our LEA adventure has been vigorous, and worth every bit of effort. John has fully used his LEA, and we have no regrets about big, bad public education and extra-curriculars in a big, bad high school. If you want to discuss the Parent Presentation, I am happy to share what I have created for John over his years. Consider it your marketing educational rebuttal plan, all in writing, over the years, into the federal document that is your child’s Deliberations.

Waiver Interest Lists: Hopefully, years ago, you called your county’s LIDDA to get on the appropriate waiver interest lists for your child’s future. Google that if you need to. Maybe you don’t eventually need or want it. (Hallelujah!) It may be one of the hardest phone calls you ever made. Don’t get emotional. Just do it. The sooner, the better. Search for your state, county, LIDDA and the waiver interest lists (Texas Home Living, HCS, CLASS). For example: CLASS has 3 parts: 1. Cognition-challenged. 2. Medically-challenged/fragile. 3. Vision/Hearing-challenged. You will reconfirm with them each 1 or 2 years. You may also find the listings online and/or on the app Your State Benefits (ours is Your Texas Benefits).

Another task of the Transition Game is the broad umbrella of Financial. Check also resources at https://www.consolidatedplanninggroup.com/…/allison… They offer a free initial consult. I then paid for further services. Lots of info on the Consolidated Planning YouTube Channel. Also, learn about Representative Payee. I have a bit of a head start, as I am his Rep Pay due to a divorce and a death.

There are many many more tasks you may need to address. (See this link for more Transition info.) Also a podcast.

Please use the experts at your LIDDA. My experiences with SSA and HHSC has always been best with courteous, unrushed phone calls. Their letters are hieroglyphics to me, so I ask a lot of questions. I have always found the helpers on the other end of the phone to be patient. I haven’t been burned yet.

All this is a drop in the bucket. There is still Housing, Legal, Social, Educational, etc. More interventions at this link. Take one step at a time. I can’t multi-task this stuff very well.

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When Supports Disappear, What Can You Do?

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You know the feeling: your well-crafted plan for your child starts to falter.

We know nothing is guaranteed, and that everyone acts first for their own individual needs. It’s not anyone’s fault, but it does make it clear it’s time for a shift in strategy.

I must help my child learn how to navigate it all. I can’t rescue him from the heartache, for it has become a lesson in life to learn well.

To quote a great philosopher:

“… I’m sorry to say so

but, sadly, it’s true

that Bang-ups

and Hang-ups

can happen to you.

You can get all hung up

in a prickle-ly perch.

And your gang will fly on

You’ll be left in a Lurch ….

I’m afraid that some times you’ll play lonely games too,

and face up to your problems ….” (abridged OH, THE PLACES YOU WILL GO! (Seuss).

So it’s time for new plans. Having a full plate of waiting interventions is a ready resource.

This has recently happened to us. Still quite painful, there is no way but forward. No plan except Next. My job is to help John move through any regret and shame into better ways to spend time and to find authentic friends.

John and I talk often about neither of us wanting pretend friends. This over-generalization speaks to a child of developmental delay, trying to catch up on peers and vocabulary. Most people are fully-absorbed in themselves, and truly not watching us. We shouldn’t have such expectations.

One of my best litmus tests is his face. His expressive language sentences aren’t totally reliable (not that he’s lying; his brain isn’t yet wired for straightforward vocabulary of self-analysis). His face can truly show happiness.

How does your child show joy?

We had worked really hard to set up a system of supports. It had worked for a number of years. Personally, for John, his year of 9th grade was joyful. There were some superb 12th grade peers who helped him feel included. In the months after that, it was a slide downhill until even I could visually see that few cared. He could feel that. Thankfully, we had a lot of great activities with authentic friends that we could immediately slide into place. And I continue to help create other performance venues that also benefit other young people.

Public performances, 2 years apart. He posted to his Instagram that day.

We both talk about pain and shame. A lot. I ask him, and see what he does and says.

We both must let go and move on … find new things. If you are a therapy parent, you know this research process never ends. I am forever on the hunt of new groups, new heroes doing wonderful activities, more helpers with momentum. Then, we join in. My job is to become a fellow helper to others and to help my son earn a good adult life. Among many skills, this includes learning to make, keep and appreciate authentic friends.

Learning to make and appreciate authentic friends. He’s a happy kid.
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High School: Electives, Risk Taking & Hormones

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Neurotypical Gen Ed Choices and Consequences

It’s that time of year: Elective selection for next year. He says he wants Band, Theater and AFJrROTC. It won’t all fit. Not in regard to time of day nor in regard to modifications/accommodations. The military doesn’t modify, ever. He has been talking about ROTC for a long time. He has friends there, the uniforms look wonderful, and he can feel the camaraderie.

You may remember that if your grades suffer, so will your extracurricular activities, and quickly: Within the first 5 weeks of the school year. So if you get in academic trouble early, it’s quite hard to dig your way out fast.

He really should pick something besides AFJrROTC, for many reasons. Maybe the computer scheduling will make that forced decision for him. It just can’t be Mom telling him to give up on a dream and be practical. The school and I all know it’s all a long-shot for John, a stretch of his academic challenges, executive function and self-regulation. 

Our high school been excellent at giving John enough rope to earn it (or not).  He had been showing some behaviors that I interpreted as self-sabotaging in band this semester. I figured it was a coded message of frustration, as his skills (and his sentences) are behind his peers. Dyscalculia (affecting sequence, timing, patterns, counting, etc.) and other learning inefficiencies are alive and well at our house. There hasn’t been the expressive sentence of “Mom, I’m frustrated and I may want to give up next year”.

I told him he wasn’t a prisoner of band, and could pick something different next year but he would lose band and not get it back. There must have been some truth in all that, as he’s doing much better now in his choices and wants to stay in.

So, we filled out next year’s elective forms and will see where the schedule allows John.  There’s a lot I don’t know, but I do know that these last two years will important opportunities for John to earn experiences.  The LEA knows we work hard on interventions in our non-school hours.

At home and with his private team, if he fails academically, we won’t grieve but instead we will be glad that he had an honest try at the best life of inclusion he can earn each year.  
Our LEA team has been stellar, the law is here and we appreciate the quandaries they face.
He must treat each teacher and class with high respect and his best decisions.  
We train for natural consequences.

Speaking of all that, his most recent essay is “How to Earn a Girlfriend”. We have lots of puberty natural consequences to work through, as well as all social ones.

His best essay thus far in life, “How To Earn A Girlfriend”

The start. Not the forever.

It won’t be John’s GPA that makes his life. 
It will be all the social EQ, executive function, auditory processing, best choices, and friendships he can create and keep.

Part 2: As it turns out, he has recently been self-advocating, verbally, boldly, that he wants one of the entrepreneurial electives in Specialized Instruction. {It can also be described as Coffee Cart in Special Education.}

The rejected elective option is Art, which has never been anything he valued. Arts and crafts to him have always been a bridge too far, something to get through as hastily as possible. Creating art continues to be a fine motor challenge.

We have just had a life-planning transition meeting, and it turns out he’s delighted with Coffee Cart Entrepreneurship. Not what Mom would choose, but, hey, it isn’t my life.

This will be his way for his natural strengths to start to blossom … but it doesn’t seal his fate. He’s quite happy for the opportunity, the training and the friends.

Mom is listening better because he is advocating better. I don’t always have to read his mind through his behavior. (Do you have that at your home?)

We still are working on that girlfriend thing. I am telling him, “in college”, and that he can practice now by using good manners, personal space, kindness and sentences. I will keep you posted.


With respect and gratitude,
Gayle

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“Pause? Resume?”

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ReDirect for Self-Starting without Nagging

Here’s something to try with our young digital addicts. It really works at this house.

John has a daily list of stuff to do before he gets to goof off (electronically, most likely). Some of these daily tasks have minutes, so the phone timer is our daily companion for self-regulation.

I wish he was as good at analog time-telling as he is at digital time. We really struggle with the long hand and the short hand, sadly. He is also using the phone calendar function to keep himself on track, but I digress.

So, for example, reading is 15 minutes. He sets his own timer, to learn to be ever-more independent, his own executive function.

We spend a lot of time together in the car, doing his list. He will interrupt himself reading (aloud or silently) to lay a big sales pitch or renegotiation on Mom.

I have learned to use a variety of facial micro-expressions, all a part of his social-emotional learning (SEL). I have also learned to use the fewest number of words, because ….. well ….. words beget more words. Since I want him to refocus on his reading (in this example), I will ask “pause?” He doesn’t want pause because he has learned that stops the clock.

When this works the best, he will immediately say “resume”, and get back to his task. You see, I didn’t say “quit talking and get to work” (or anything similar). I used one word to ask him a time question.

He really wants that list done.

We take a lot of old-fashioned learning in the car when we drive. We have hardcopy of his band percussion assignments, drumsticks, some dog-eared Harry Potter paperbacks (pages dropping out by the day), and the device he uses for IXL, our on-going academic supplement. (Check it out, it might work for you. You choose the grade, the subject to study, you get analytics to share back to the school district, and it costs about $10/month.)

So, tools are ever at hand. Mom just asks “Pause?”, he says “Resume!”, and starts himself back on task.

I will admit this does loop a lot.

He may want “to talk”, and that is his choice, resulting in a Pause we can both live with. With the phone timer the bad guy, I try to make all this not my job. If he “wants to waste your evening, that’s OK with me”.

I do have to be mindful to disconnect my list from his list. If I fail in this, I get frustrated.

We work on time awareness constantly. We know early intervention is hugely important.

And yet, each day ticks by, toward adult “independence”, whatever that will look like.

That keeps us worried.

Peace be with us,

Gayle

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RideAlong 08.27.21 with Deputy Austin Gay, Crisis Intervention Team, Constable Precinct #1, Montgomery County

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Deputy Austin Gay, the go-to for Precinct 1 tour guide, shared his day with me. He has a long career of service ranging from Hostage Negotiation to Crisis Intervention to Mental Health.

During the day, Deputy Austin Gay (soon to become a Sergeant and a supervisor) shared his personal vision for growing their back-office operations and pro-active county-wide projects of prevention and intervention.

The key, he said, is listening thoroughly.  Then to guide, educate, protect and redirect.

(It sounds a lot like parenting, doesn’t it? We show respect to our kids’ perspective by listening, asking questions, letting them get their words out first. This, of course, takes patience and a kind heart.)

This Mental Health CIT unit is one of only two, Montgomery County Pct. 1 Mental Health and Crisis Intervention unit and Conroe Police Department’s CERT Team, in our geographically-large county. It has the top-down mission to purposefully support mental health as the first consideration when the heat is on.

He went out of his way to show me the eye-popping quantity of square miles the units cover 24/7.   I also got a first-class tour of agencies and law enforcement colleagues. I asked them the same thing, “What do you want us to know? ”

At the top of their list is to do all they can to calm those caught up in crisis situations.  More talking, avoiding handcuffs. (As a mom, I would say more “easy way”, much less “hard way”.)

This listening and building relationships takes more time. It takes patience. Slowing down someone’s knee-jerk reactions can make time on your side. (As a mom, this sure rings true in my house.)

When he encounters those headed toward trouble and/or voicing suicidal thoughts, he likes to ask “what happened today that is different from yesterday?”, trying to determine the antecedent causing the behavior or action(s) taken.  The team shares “if you are depressed, you are not crazy”.

I began learning more about Sheriffs and Constables. Our county has one elected Sheriff and five elected Constables in five respective precincts. (Other agencies are State Troopers, DPS, Fire, EMS, and Justices of the Peace (JPs).   Precinct 1 covers Lake Conroe, Mental Health, Canine, Schools and other operations.

Our county recently was awarded ARPA funds via the CARES Act for 10 more mental health crisis professionals: 3 supervisors and 7 deputies. This grows the team from 14 to soon 24.

Beth D., Program Director, TCBHC Crisis Services

Our local mental health authority (historically labeled LIDDA) is Tri County Behavioral Health Care (TCBHC). It is a long-standing, grandfathered-in non-profit covering Montgomery, Walker and Liberty Counties, and provides resources for the under-and un-insured. They do much more. They have an in-patient and an out-patient team. Different buildings, similar mission. There are laws to constrain media coverage of law enforcement (funny to think they consider me media), so this photo with Beth D., (Interim) Program Director, Crises Services, TCBHC, is the only one representing many conversations of the day.

You have seen the ambulances of Montgomery County Hospital District (MCHD). They also operate EMS Districts, District Chiefs, and 24/7 EMS staff.

Within the Emergency Services Department (ESD): Fire-coordinated responses, 911 Dispatcher offices, and numerous stations (shared agencies or solo). (I have been studying this several years, and I still get dizzy.)

We then started talking about our young people of neurodiversity. I asked him what he would share with you all.   Here are some recommendations:

  1. Don’t let your child control the family.
  2. Parents should teach real consequences for the real world. Natural consequences.
  3. Teach your children right v. wrong.
  4. Have boundaries and rules.
  5. Discipline your child (time outs, groundings, etc.)
  6. Listen to your kids. If they talk about a teenage breakup, it’s just as real and powerful as an adult divorce.
  7. Be aware of the pain of the moment. Youth don’t always have the big picture of life’s ups and downs as adults have grown to know.
  8. If your family member is going to drive (as in launching for independence), have a family determination of the possible consequences, financial liabilities, physical risks, possible damages. This would apply if the young or elderly had their version of neurodiversity / reduced awareness of natural consequences. There is a potential of a felony or death, a lifetime of care, resultant guilt and other psychological issues. Determine that your family member is emotionally ready and is capable of remorse.
  9. A “crash” has contributing factors. It’s not an “accident”.
  10. If a young person is neurotypical, the age of culpability is usually 10 years old. (If there is developmental delay and/or issues of neurodiversity, this will be a different number, to be determined by the court and experts.)

We also talked about Emergency Detention Orders (EDOs). This became a complicated conversation. If you have a first responder in your life, ask them.

I hope to soon spend another day with this team. Lots of bridges to keep building. Want to help?

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Lower My Expectations!

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This school morning was the last-Friday-of-Junior-High-School.

And everything he did blew right through my expectations.

Silly mom me, I had hoped for a rosy-glow sort of last Spirit Day launch.

Ha!

You know how that goes, don’t you?

In every direction, he didn’t do as I would hope.

I could give you a list, but my blood pressure will go back up.

Last night, at a band booster parent initiation, I learned a neurotypical young man, several years older than John, does some of the things that John does.

When I hear such great news, it is a gift to my peace-of-mind.

Dorky, cave-boy teenager things. Could this be normal? Typical?

Our therapy and interventions world has a forward-push, compliance mindset. Right?

Pretty rigid.

This morning, John was way past zoo animal. I have seen better behavior out of chimpanzees.

Such boy-stupid stuff could be happening in other, neurotypical homes?

No words for this sense of relief.

So, as he went running for the bus looking exactly like a motor-planning Mr. Bean movie before my eyes,

it was a wonder he had everything.

Yes, of course, all in the wrong place according to “the plan”, whatever that is.

Still, all in his arms, and he was laughing.

In 30 seconds, we met in the middle for the forgotten mask hand-off.

I then told him to go faster.

Forgot to say I love him forever. That is my shame.

Not that the morning wasn’t to my “expectation”, but that I forgot the most important words of the day.

I sure hope he comes home today as usual. I have some mending to do to my spirit.

He probably didn’t notice? Or did he?

Peace to us all,

Gayle

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Stimming, Frozen Pipes, Wet Vacs and Evaluations: Comfort v. Risk.

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This first 2020-2021 winter of COVID–19, we all have been battling Mother Nature. She won v. our pipes, and it was a spectacular inside-the-house mess. I put my son in charge of the larger, louder, borrowed wet vac, and it was sensory overload for hours. Triage is now over; the extensive repairs in the house will be a monster. He did great, with just a bit of his auditory stim.

All things considered, he probably coped better than mom did.

But, in the general day-to-day of life, do I disregard/ignore/allow his stimming? It depends. How does it make his life better?

Usually, the purpose of the repetitive action of perseverating is to find immediate individual comfort and security. In our world of raising children with neurodiversity, I hear often we should allow it, tolerate it, let them indulge in it.

I think that depends on the longer-term purpose. And, to provide something to ponder further, here is a link to The Brain’s Background Noise May be Meaningful After All (WIRED).

However, back to perseverating: When John was in elementary school, he chose humming. Loudly. Academically-disruptive. So, we have been working on re-directs for at least 9 years.

His stim of choice is a loud mostly-monotonous hum.

There was a recent mom-eureka-moment, when I noticed him go for 3+ hours, neurotypically quiet, not humming, when he could have, but didn’t, because he chose. (It was in our church’s media control room where we volunteer.)

Now, to be sure, he does stim occasionally for Let’s-aggravate-Mom reasons, deliberately starting as I enter the room. Attention-seeking. This audience leaves that room pronto, asap.

He may also stim for causes of grief and boredom. In the spirit of “water-the-flowers-not-the-weeds“, and “name-it-and-set-limits“, he is re-directed to stim in his personal bedroom anytime he prefers. (He also hears this boundary regarding puberty issues requiring privacy, if you catch my drift.)

So that’s my compassionate re-direct, which I always hope he chooses later (delayed gratification) to instead stay in the moment of joint attention.

Tomorrow’s hope, his future, is far more important than today’s comfort.

His current choice of stim could really affect the future of his relationships, in every direction.

There is another issue that affects both our short-term comfort compared to the longer-term benefit. I have been stalling on a formal Local Education Authority (LEA) (school) educational evaluation for years. In kindergarten, the wrong set of tests were used on nearly-non-verbal John, and the result was a pretty low IQ number.

In subsequent ARDs, the Committee decided John wasn’t stuck in his learning, that he wasn’t that IQ number, and that he continued to make academic progress. My mom-fear was his repeat performance of not caring, his not understanding the unintentional consequences of doing fast-and-sloppy work that would result in a label of bias against his possibilities. Our ARD discussions were transparent, we all agreed that he didn’t yet have any label other than autism. They all knew mom was in no hurry for a worse label, given the research available and with moving through developmental delay with nearly 24/7 interventions.

I agreed to have a discussion with the diagnostician and the on-going speech-language pathologist (SLP). We agreed they would push John, using humor and as many inclusion tools as possible, to make some educational evaluations on his academic progress. Not included is any IQ testing. I agreed to trust them and their educator hearts of coaxing out of John the best they can of the best he can do.

Two junior high educators who do will do his academic evaluations. I trust them.

For quite some years, we have been watching the issue of curricular LRE at his local LEA. As a parent, it was a gentle charm offensive of both the law and what John’s learning strengths needed for his best successful learning. Like the very best parts of Wright’s Law, in your face.

So, now the time has arrived, and I have had many conversations with the powers-that-be. John has a huge opportunity he has earned.

Can he move from Specialized/Explicit Instruction, into the world of Resource with Curricular LRE and hold his own?

So we are back to the trade-off for both he and mom of short-term comfort at the expense of longer-term quality of life.

Time will tell. I will keep you posted.

Keep our kids moving forward. If they are alive, there is always hope of continued neural pathways.

Peace,

Gayle

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Less Stuff, More Experiences

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(The Emergency Game, Adventures To Share & Village Goats)

Many of our kids love structure of time and activities ….. therefore, so do many of us parents. School is dismissing soon for the holidays, and we will have the kids home ever-more-so during this time of COVID-19 shutdown.

What John needs isn’t more stuff. Instead, he needs a greater database of experiences, to think more of others and to build his vocabulary.

It will be a much quieter, different kind of Christmas at our house. John’s brother will be staying in Oregon. John’s beloved cousin/nephew and family will be staying at their home. John’s dad went into hospice care on Christmas Day last year, and on to heaven mid-January. Bin, our exchange student, is back in Vietnam. So, things are a lot quieter.

Plus, puberty is here, and so is his rising awareness of the world around him.

So, we need some new ideas.

Such as: He is getting a village goat for Christmas. Where the village will be, we don’t know. But I bet we will talk more about geography. The World Vision goat he is donating will be surely loved and will have a great life somewhere, providing micro-economic support to an extended family.

World Vision’s Goats have long been a favorite of ours

Another thing we will be trying: Have you ever had a list of things you wanted to do and yet ran out of time? We have. So, this year, we are being more purposeful. Each desired adventure is written on a note to be wrapped, and one-a-day will be chosen by John for the next day. This will get us out of the house for part of each day, and still allow for some goofing off (John’s favorite thing to do).

And I keep adding adventure ideas as I think of them

Rather than allowing the hours to drift into endless electronics (other than the Raspberry Pi component Santa is getting John), we will continue to have his daily list to get done first. (Raspberry Pi may move up the list hierarchy.)

It’s my poor planning if there isn’t time on that list for shared mom/son conversation about life. One of the results of all his interventions and the natural process of growing up has been his increased interest in life around him, including urgency and emergencies. (I want him to learn to hustle, to move faster, not to dillydally….. you know what I mean, right?)

These days, we see ever-higher stakes on why we must educate our children of neurodiversity to somehow handle the chaos of the world. One of our worst parental fears: What if they get caught in the wrong place at the wrong time? They won’t be seeking trouble, but could slip into it accidentally.

Some of our young people have a challenge in processing complex requests, putting sentences together under pressure and following rapid instructions. What if our kids get caught up in something they don’t understand? They don’t sense the danger nor knows how to handle it?

Therefore, we practice. We practice what to do and we practice short sentences he can use when the pressure is on.

We have to train developmental delay to see traps ahead, to calculate social risks, to pay attention to the clues from others. By no choice of their own, our kiddos are naive, distracted, sensory-overwhelmed and challenged in processing language.

And yet, adapting to these risks is what helps them step into their desires, their motivations and to be able to move into their adult lives.

So how do we get them to react faster and be more aware of such dangers?

We are playing the Emergency Game (audio podcast link) at home: processing each Amber alert, every ambulance siren. Asking the question: Is it real or pretend? When a firetruck goes by, what is happening there? When we go anywhere, can he find his way back? I let my kid lead the way retracing our steps. A gathering of people these days will catch our eye: What is going on? Is it an emergency? Does he need to do something? Or need to escape to safety? What is safety, exactly?

Randomly, I will playfully holler at him to “come here, quick”. He dillydallies, so I call out “emergency!”, and he laughingly comes trotting over. “Doesn’t seem like an emergency to me, Mom” he says. So we label that a pretend one.

Years ago, I made these cards to give away when my son would have a bad-decision-emergency, and onlookers wanted to give me an earful. As you already know, helping your child through such an important and urgent teachable moment requires your full focus. Not much time to educate advice-givers, you have your hands full. The times that I ignored the spectators and didn’t say anything to educate them, I felt shame and regretted they still had their wrong presumptions.

With these cards, I could hand them a bit of understanding, and then focus on helping re-direct my child through our own little emergency.

What ideas do you have?

We have been working on the workshop “The Emergency Game: Training Neurodiversity To Be Aware of the Unexpected, Avoid Danger & Practice Escape from Entrapment”. (video link).

Our kids need good solid neural pathways and awareness of emergency-responses. They need to know how to read body language and tone of voice. So they have will automatic tools to use to survive if they are ever in the wrong place at the wrong time.

So, in this season of forced leisure, social isolation and slower pace of everything, it’s my mom-job to keep him bored enough to keep his brain busy. If I let him fade into the black hole of electronics, it will displace the deeper, creative, critical thinking his future needs.

So we will set and keep some boundaries.

Perhaps some of our ideas may spark something in your family.

Let’s keep talking.

With respect to all,

Gayle

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Water the Flowers, Not the Weeds.

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We are all doing our best to help the right things flourish, to communicate and then hold the right boundaries.

It is easy to get distracted. Life is a slippery slope of choices.

Things may be doing well, everyone playing nicely together, making good choices…..

then something happens, and things go downhill fast.

How do we help model and teach self-control, emotional equilibrium and self-regulation?

Ever hear: “Don’t worry that the kids aren’t listening. Worry that they are always watching.” (Robert Fulghum, “All I Really Need to Know I Learned In Kindergarten“)

So, evidently, I teach by what I do.

I should pay attention to good choices (flowers). I should do my best to ignore relatively-harmless choices that get under my skin (weeds).

(If it were a toxic, life-threatening weed, that would be a different response.)

I do ask John why he is humming or stimming. I try very hard not to bring shame into the conversation.

I try very hard to name the weed with respectful words and tone of voice. And then with the same tone and respect, set the boundaries for this weedful choice.

For example,

“That’s called stimming, and you can do that in your room”

or

“that’s called playing with your privates, and you can also do that in your room”.

With everyone under your roof under foot, and useful, novel distractions more than six feet away, our patience is evermore necessary.

We use a written paper list every day. Or I should say, “on every good day”.

I just say, “How’s that list coming?” and then bite my tongue on nagging.

I am not going to get anyone to do any good habit because I nag them.

Nor have I ever made someone do something they didn’t want to do.

If I stay mindful: What he can choose that will make his life better in the long term … then that is what I need to do.

This also works for my personal self-regulation. I have often found myself going around in circles, getting nothing accomplished.

I surely need to make better choices as soon as I realize my frustration.

You know ….. stuff I learned in kindergarten.

May we all find peace.

Gayle

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Re-framing the Game, Any Game: “I’m Going to Win!”

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Here’s what is working great to manipulate John.

To do what I want him to do.

And yet he thinks he’s in charge and empowered.

I yell out, “I’m going to win!”

Another version of the game.

This is also working for the morning car-pool / bus run

and when I need him to take his vitamins / supplements.

We do this a lot in the car, before school. Not his favorite thing!
Twice a day, at least, this gamification of a requirement.

John almost died from fire ant bites at age 21 months. Anaphylactic reaction.

And it happened again as we were re-calibrating his immune system to survive fire ants here in Texas.

We will always be grateful to Dr. Stephen Miles and the project with Fort Hood soldiers, for the specific medical protocol.

We are now free of the Epi-Pen.

It took 3-4 years of monthly jabs with medically-supervised increasing amounts of formic acid.

I like to think of fire ants blenderized, but that’s just my mom mind.

John’s immune system was compromised as a pre-mature birth,

and with the massive jolt of the anaphylactic reaction, we have been trying to catch up since age 21 months.

Want to talk methylation? Mitochondria? John is all tall and no wide. Skinny, low muscle tone. Developmental Delay.

Sound familiar?

To continue to repair his immune system, nutrition and swallowing vitamins became an intervention.

Pill-Swallowing #1

Pill-Swallowing #2

Thank you, angels, he is getting competitive!

So if you are struggling to get or keep your kids on schedule, try a variation?

For example: “I bet you can’t get your vitamins done before I drive us to ….”

Whatever you are doing, with loving, laughing, friendly competition.

Getting your kids to do something they need to do.

I have tried nagging. Doesn’t work!

Peace be with us.

Gayle

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Academic Interventions in Daily Bits, All Summer Long

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How is academic long-term memory built?

A bit every day. Consistently.

So that is what we do in the summer.

So we don’t academically slide backwards.

To keep track of the bits:

Daily: The Value of the List.

We practice academics wherever we find ourselves.

In the car. At the library. In the restaurant.

(Before the food comes. Much easier to concentrate and things don’t get messy.)

Sometimes we are still in the driveway or elsewhere parked.

It is quiet in the car, and I got him where I want him.

Contained.

So important to be consistent. So easy to let it slide.

Don’t tell him, but he secretly likes that consistency.

And minimal distraction is his friend.

I give him the choice of “in the car” or “at the table”.

Table hardly ever wins.

Developmental delay means we take longer than other kids to learn the same stuff.

Daily we have some kind of explicit instruction toward reading.

Some days with the professionals.

Explicit Instruction, Leaving Nothing to Chance,
Texas Reading Institute (Houston, The Woodlands)

Or it’s just us.

At home, in the car, when we eat in a restaurant, during the day’s errands.

Explicit Instruction, With Mom

It wouldn’t be summer without behavior redirects.

So, here’s a new one, wickedly effective, from taekwondo.

Planking.

For Hard-Way Time-Outs: Borrowed from Taekwondo and Occupational Therapy.

If Hard Way wins, John earns a time out for bad choice(s).

We plank.

The time varies, and further bad choices increases the time.

Mom sets the timer, and if he breaks form,

“pause”.

When he does it right,

“resume”

He can rotate through planking, Superman, pushups, sit-ups and cross crunch.

We got permission from our occupational therapist for that medley.

The less Mom talks, the better. (I let the timer do my talking for me.)

So, may I encourage you to keep at academics somehow over the summer?

It will give you valuable leverage when you are negotiating with the school.

That you kept trying over the summer.

Yeah, Academic Long-Term Memory . . . .

Much love, peace be with us,

Gayle

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I am Just Going To Stand Here Until…..

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We are still using this, over 3 years later:

With his increased independence, he sometimes trots off solo too soon, with some attitude, ignoring my words.

I just stand still, until he boomerangs back, with a smirk on his face.

I smile or keep a neutral face. And then we proceed together.

If an adult feels a need to comment, I merely say “we are working on our social skills”, and smile.

They always nod and walk off.

(We have worked on this for years, backward chaining.)

We Are Just Going To Stand Here Until . . .

A re-direct to try when you need a good choice

When John doesn’t want to make a good choice (at home or out in public), it has worked astonishingly well for Mom to say, “We are just going to stand here until you are ready to . . . . . . . ”

And we just stand there.

In the bathroom, in the parking lot, going up the stairs at church, in the grocery story, wherever.

We usually are still for about 4.5 seconds, and then his wanting to move gets bigger than his stubborn.

It is a little miracle.

I share it with you.   Maybe it can be a little miracle for you also.

Summer peace be with us,

Gayle

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“I Want (to earn) Braces” — Interventions for building oral sensory integration and kid intrinsic motivation.

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It seems all his peers have braces.

John notices and wants to join the party.

He heard someone say, “You can’t talk with braces”,

so we now talk about that.

He would have to work harder to enunciate ever-more clearly.

Scary thought.

Dr. Kendal Stewart, one of our biomedical doctors, recently told me to wait on braces until puberty comes in strongly,

due to the inflammation that braces cause.

Testosterone is great for fighting inflammation.

And we all, especially our kids, are fighting inflammation in the body.

So we practice brushing and flossing. Getting ready.

Dental hygiene has always been a challenge.

In the car, walking to school, in the bathtub, in bed.

Our stash in the car.
(The straws are for chewing on, instead of his shirt)

Amazingly, he is now sticking that toothbrush into places where I couldn’t get a crowbar previously.

Oral defensiveness has always been in our lives.

Does your child like getting his teeth brushed?

Hair cut, shampooed and brushed?

Kiddo not too keen on pill swallowing? (and more on that)

Picky Eater? Blowing candles, chewing gum?

The Trigeminal Nerve System is a huge sensory area of the human body. (see also the two photos and links below)

First time getting that toothbrush into the Trigeminal Nerve (Zones 2 & 3) area!
We keep at it…..We want those cheek pockets to relax!
As a mom friend put it, “a model of dental hygiene out in the community”
Practicing flossing for braces. We have a long way to go with this one
https://teachmeanatomy.info/head/nerves/maxillary-nerve/
https://teachmeanatomy.info/head/nerves/maxillary-nerve/

We also continue with Quantum Reflex Integration (QRI) to help sensory integration and methylation. More about that soon.

Peace be with us,

Gayle


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“Screw You, Mom, I’m Walking to School”

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How Do I Interpret What He Is Thinking?

This past winter, early on a cold morning, I sent this email to John’s teachers:

“It breaks my heart but John chose to miss the bus this morning.
Dillydallying, bad choices and choosing to ignore all offers of help.
This breaks my heart, and yet we’ve been cruising up to this precipice a long time. So we are doing a Mom Day and #MomList all day today. John has helped me compose this email and is pressing Send. Barbara G. had talked about this happening once but only once in her family. I’m following that model.”

Thus, John was not happy, and tried valiantly to renegotiate.

Soon, from another room, I heard the front door slam.

No panic, I figured he was walking toward school.

I grabbed my stuff and headed out.

Scanning the street: no John.

38 degrees F outside.

I drove by the bus stop. No John.

Good thinking, John. I had said 10 times that you had missed the bus.

Why would he wait at the bus stop?

Then I headed out of the neighborhood, out to the busy street.

No John.

(Afterward, I hear from a neighbor mom who said John stopped in front of her house, the last bus stop out of the neighborhood. She then told him the bus had gone, and off he went wordlessly.)

Wordlessly is the key thing: I never get the long (or short) version of any story.

He is a young man who keeps it mostly in his head.

Back to #FadingTheSupports, I spy John stopped on the sidewalk, very near a high-traffic intersection.

I pull over, give a little toot, and beckon “come here”.

As he climbs wordlessly into the car (1/29/19 video), I keep it zipped other than to say, “How about a tardy?”

Nobody likes #HardWay!

He is quiet, gives a tiny nod, and then says with a little smirk, “Guess I am going to be the last kid to school today”.

This is a great joke, as we are constantly talking about being #FirstKid, #LastKid and #MiddleKid.

To all activities.

Getting out of the house on time is a real challenge for us.

Anyway, we eventually are in the school office waiting for a tardy slip and the teacher kindly asks John if he’s running a little late.

He sheepishly looks at me, but I am #ZippingIt, standing as far out of the room as I can get.

He negotiates his first tardy slip, tentatively glances at me, gets a thumbs up, and starts trotting down the hallway.

As I am walking out of the school, his Assistant Principal steps out also, and I walk her to her car, telling the short version of the story.

Soon we are both laughing and talking kid strategies.

Let’s see how long John remembers this lesson. I will keep you posted.

(So far, he’s made the bus without having to run. So, hopefully, the lesson is sticking.)

Peace be with us,

Gayle

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“I Guess We’re #LastKid”

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Mom, Don’t Get Mad. Just Get Out.

It’s been a rough weekend of parenting.

My son John has tested every boundary with me these last few days.

One morning, he kept banging on the drums instead of anything I was asking him to do, tauntingly, purposefully, when I finally said “I’ll be waiting in the car”.

#MomCapitulation.

I gave up on redirecting, and just got out the door with whatever was left of my dignity.

Nothing I was doing or saying was moving him toward out-the-door-on-time.

He soon sauntered out the front door, still in his pajamas, playing with our gigantic colorful umbrella. Like a new toy.

I started to back the car down the driveway.

He got the message, I guess, and went back inside.

All of this with a big smirk on his face.

About 5 minutes later, he came out dressed. At least, as far as I could tell.

He seemed very proud of himself with that umbrella. A new skill due to all the rain we’ve had lately.

He (finally) climbed in the car and said “I guess we’re last kid today.”

Yup.

My nagging doesn’t make him move faster. My removal of the audience does.

Please know we’ve been backward chaining and rehearsing and practicing these skills for years.

The better I back off, the better he comes forward.

The more time I allow for this “game”, the better things work.

The best two things I do is #MomZipIt and remember that the snooze alarm is not my friend.😳

I can control when I start the morning, and that influences his progress.

But I cannot control his choices. I can only do the best to set the environment for his success.

Then stand down and let him face the consequences of his choices.

We’ve tried to grow his social awareness of his neurotypical peers.

They have become increasingly important to him.

He cares now whether he is First Kid, Middle Kid or Last Kid to arrive.

It is so quiet and peaceful in the quiet car waiting for him, if I allow myself to let go of control.

I guess he cares, because he talks about that each time we arrive.

If our kids lack clear expressive language sentences telling us what they are thinking, we have to do our best guessing with the clues we do get.

Peace be with us,

Gayle

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I Love Easy Way. Can We Do That Next Time?

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Strong Willed Child strategies work at my house.

It is important to build and then hold the boundaries that were created when everyone was calm.

Even when frustrated, I try to minimize sarcasm as I say “please”.

And I tell him he has to do better.

I am trying to keep his choices intrinsic, coming from how he feels about himself.

And if I make a bad choice (lose my temper, for example), I apologize to John as quickly as possible, sincerely.

There can be only one set of rules.

And my walk better match my talk.

Always a good thing when I can remember to use humor.

I am modeling a moral compass, my urgent need for him to learn right versus wrong.

I let John think he wins by offering choices I’m happy with (no matter which one he picks).

And we work on social skills everywhere we go.

We still use a paper list daily.

Some days it can take forever to get The List done

And, The List goes with us. Wherever we go.

The List that day

And we have to make the most of each day’s learning opportunities and joys.

How do I teach my kids that they are in charge of their happiness?

Only if I model that.

Recently, we went to the pediatrician. He decided to make several bad choices there.

He got to apologize to the receptionist for crawling across her floor.

And, as we waited, because he knew I can get embarrassed at all those developmental delay noises.

I was trying to get through his homework while we waited.

But, that was my agenda.

Not his.

And he was purposefully testing social and behavior boundaries we have built.

Lots of little irritating things: Noises, behaviors, playing with a pile of their magazines.

Eventually, I used up my patience and my redirects.

Then I heard my mom voice resort to

“Do you want to tell Mr. Brooks that you lost your blue stripe?”……

John’s face lost his little smirk.

We just slipped from intrinsic to extrinsic motivation. I had introduced fear, not self-esteem.

So it was a morning of many Try Again’s for us both.

I have to let him feel like it’s win win (Strong Willed Child, again).

And it is a good thing he’s actually picking up magazines to look at them.

Trying to count the blessings when I can, regardless of my temporary embarrassment.

We talk so very often about Easy Way versus Hard Way.

Peace be with us,

Gayle

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Someday He Will Read For Fun

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It has been a full-court press on John being able to read.

To actually read. Not just fake it.

We had to go back to basic phonetic awareness.

Vowel sounds.

Consonant sounds.

The learning he missed in Pre-K and Kindergarten.

We were so distracted with other interventions

that Mom got lulled into a false sense of well-being

because he could memorize flash card words.

So, back to what is working.

It is called explicit instruction.

When you teach everything.

When you assume nothing.

We could talk for 2 hours (easy) on the topic of

“Help, My Kid/GrandKid Hates to Read! What Can I Do About That?”

We would talk about all the steps along the way to best practices on literacy.

He is making progress.

He smiles now, whereas before he would do all he could to escape.

Would you like to know more?

Peace be with us,

Gayle

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Co-Parent Well (Enough) Within Learning Differences

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I have been trained not to let John get away with anything.

Trained to create, communicate and hold firm, loving boundaries.

With great humor (as often as I can remember to step away before I lose my sense of humor).

Sometimes, when he is with his dad, those boundaries smudge a little.

Or a lot.

So, Dad and Mom (or whoever is helping to co-parent) have to share our mutual rules and expectations when everyone is in a calm, teachable state.

Especially if our parenting styles clash.

Before John the Clever Manipulator gets a bright idea to widen that space between Dad and Mom.

(As I have said before, be glad your child is trying to manipulate you. Manipulation is a cognitive, thinking function.

They just don’t get to get away with it.

We have co-parented oppositely for a long time.

But we know we have to set our differences aside, to make the best of it, for John’s benefit.

So it’s a good thing that people are surprised to learn that we have been divorced for years.

I have learned as a recovering co-dependent what not to do.

I read this book over and over.

It mostly involves zipping it,

walking away when it isn’t my time to co-parent,

and being grateful (silently, inside my head) when John tries to work the system.

As the old song goes, “you got to know when to hold ’em, know when to fold ’em, know when to walk away.”

Peace be with us,

Gayle


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When Our Children Step Forward, We Step Back

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Do you recognize this in your child?

It was a school field trip, and someone needed to take charge of the Bus sign.

One neuro-typical child had the sign, but realized it was the wrong bus for her.

My friend Edith, the adult in charge, had to move to a further bus, and needed a sign holder.

She asked for a volunteer.

Believe it or not, the kid that stepped forward was this little guy.

And then this friend (she is quite the mentor) stepped up along with him, in support.

And thus John was in charge, and it all seemed to end OK.

Flash forward a month or two.

John was on the couch, under a blanket, still in his jammies.

Mom had been saying it was time for school for many minutes.

It was getting close to being the last kid to Choir.

I asked if he wanted any help.

More than once, I am reluctant to admit.  (So that means I was nagging!)

Each answer was the same, “No.  By myself.”

I finally said, “I hope you aren’t the last kid to Choir.  I will wait for you in the car.”

And I walked out.

It was about 10 minutes later, when he was locking the front door on the way out.

A face full of smile, shiny eyes.

His shirt was upside down, and pants and socks needed a few adjustments.

Other than that, it all looked pretty much good enough.

(And, months later, this system still works.  The sooner I step out, the more time he has to get his plan together and take action.  He doesn’t need me telling him the same thing over and over.)

Peace be with us and Happy Valentines Day!

Gayle 

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#LetGo

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Let Go Because of Our Kids

Let Go By Family, Friends & Others

The shame, the pain, the bleeding are all real.

When we are cut loose.

Because of a diagnosis or two. Maybe also some developmental delay, maybe some different behaviors. But no one is in danger. And the diagnosis isn’t “catching”, nor will it rub off on anyone else.

But still, #LetGo by those with whom we thought we had a connection.

By extended family who can’t understand nor offer help.

This may have happened to you, especially in the first days.

I was wrong to hope, to assume unaffected family could understand.

Dangit, I couldn’t even understand what was happening. So, realistically, why should I hope or expect extended family to help save the day?

How about being let go by friends – still very painful, and yet more easily understood, perhaps.

The Shame and Pain of Being Let Go

And how about when we are let go by others:

Schools, worship, neighbors, acquaintances, business, and others we thought were in our community.

At our house, we have recently been #LetGo by our piano lessons on-the-go, home-delivered.

Out of the blue, right after a public recital,

minutes after I gave the teacher her Christmas gift in cash.

It’s one thing to expect it, to see it coming.

Much worse when it comes out of the blue.

When you don’t see it coming.

And yet, rejection is a part of life.

Sometimes you know the reason;

sometimes you don’t.

If we think it is because of our kids with learning differences, because of their behaviors or someone’s bias, it hurts keenly.

Because it is less our kids’ “fault”.

And more the diagnosis and the struggles that accompany.

If it were just about us as adults or as parents and not about our kids, we could probably more easily process the #LettingGo.

Because we are supposed to be able to handle stuff like that.

The rejection becomes intertwined, us with our kids.

Hard. Painful. Shaming.

Can we overcome and rise through it?

To serve our kids and our new village?

Find our new purpose, reclaim our joy?

Again be glad for the journey?

So important. #LessThanEasy.

Peace be with us,

Gayle


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Easier To Do It Myself, But……

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Patience to Help Our Kids Build Cognitive Neural Pathways and Self-Control

Guest Blog in support of AMAB – Autism Moms Are Beautiful (www.AMABeautiful.org) Winter 2019, Issue No. 6.

AMAB Magazine

Link: https://amabeautiful.org/click-link-amab-magazine-winter-2018/

Winter 2019, Volume No. 6. Guest Blog.
In Support of AMAB
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Unplanned Blessings of Taking Risks With Your Child

It's Your Life Going By Also

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Has this happened to you:  You have things you must do, and no option but to bring along your child?

Sharing with our kids our grown-up adventures can be great unplanned interventions.

We parents sometimes forget that these passing minutes are our lives also.

We may struggle with balancing time and attention for individual kids, ourselves, and Family Movie Night.

Less than easy, and yet our time with our kids is going by at the speed of light.

(For this conversation, let’s assume our kids make the jump to independence.)

Here’s an example of an unplanned risk:

We were parked in the far corner of the Taco Bell parking lot, under the only shade tree.

With our drive-through sitting on our laps.

Fancy fundraiser event. He was the only kid “hanging out” with Mom.

He asked to go to the bathroom by himself.

So I let him make a run for it, with a “watch for cars!” in his ears.

Risky, right?

After eating, he wanted to do it again.

So he went solo on a trash run.

On another occasion, we went to a local Saturday afternoon festival.  
It wasn’t my original intention to take him because it was:
Hot.   Loud.
He was

Hot.  Complaining.

Dabbing in the Rain

These were going to be neural pathways the Hard Way.
(I was actually very happy he was sweating, for there was a time John didn’t sweat,
back when his body wasn’t methylating……another story, another time.)
We survived it, fine and dandy.
On a third “opportunity”, he also got stuck helping me at a local Chamber of Commerce fundraiser.
It was posh.
He was a great sport hanging out on the couch while I worked.
At the end, we walked out in the dark. 
Great weather.  Stormy.
Lovely negative ions.
We took our shoes off and walked to the car in the drizzle.
So may I encourage us to take our kids wherever we go.
It’s the ultimate intervention of neuro-typical inclusion.
There is only one world, the one we live in.
How else will they learn?
Peace be with us,
Gayle

 

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The Pressure of Pressure, All Good

Forced Cuddling: Building Neural Pathways for Future Relationships

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Big brother helps also. It’s a family project.

Pretty common thing at our house: a Horrible Hug.

https://picklebums.com/hug-your-kids-when-they-are-being-horrible/

Really, it’s more like me flopping (gently) on top, re-directing John with humor and mirroring his goofy faces.

Until he smiles.

Much better re-direct than anything in frustration.

I also have tickled him.

I make John cuddle with me, in the hope of building long-term neural pathways for his future relationships.

I think he is kinda liking it.

And when he doesn’t like it, he hears this very familiar Mom question:  “Hard way or easy way?”

Thanks, Sheryl Sitts, Journey of Possibilities, for this link (click for the full story of all benefits):

“When a hug lasts 20 seconds, there is a therapeutic effect on the body and mind. The reason is that a sincere embrace produces a hormone called “oxytocin”, also known as the love hormone. This substance has many benefits in our physical and mental health, helps us, among other things, to relax, to feel safe and calm our fears and anxiety.” 

We help our children build happy neural pathways via happy and consistent experiences.

Maybe this will help in your world,

Peace be with us,

Gayle

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Piano Games, Part 3

BTW, If It's on the Floor, It's Mine

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Treble Clef Lines and Spaces Finger Positions. F, A, C, E are notes on lines. You can see the lines on those fingers. The rest are on spaces.

John’s piano teacher continues to think of innovative teaching techniques.

I like this one:  “Point with your eyes”.

(Gonna use that one elsewhere.)

(On the treble clef staff) “D has no whiskers”   (but C does).

And they were counting measures, approaching it from several perspectives.

So all that is great,

and mostly he is compliant and obedient.

And yet, sometimes John makes poor behavior choices.

Both when our teacher is here and when she isn’t.

Getting those fingers on the correct notes.

Sometimes John is quite cavalier in how he treats his sheet music, his drum sticks (and other stuff).

With a smirk on his face.

So I know it’s not just careless.

He’s intentionally checking the perimeter fence for holes in the rules.

(You can tell we have been watching the Jurassic Park series this summer.

Velociraptors are still on my mine.)

Anyway, back to the stuff on the floor:

If it’s on the floor, it’s mine (overnight).

The stuff ends up high, in eyesight, and I surely hope,

quite tantalizing in its teachable moment.

The formation of a good-habit-solid-neural-pathway is a process of absolute consistency.

Peace be with us,

Gayle

 

 

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Choices, Consequences & Dendrites

Neural Pathways Need Precise Reinforcement

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John had percussion lessons at school on Thursday mornings, early.

One such morning, I got a report that John had made poor choices during the lesson.

Because the consequence needed to be as immediate as possible,

he immediately “lost something valuable” the rest of that day.

I had swapped a few messages with his teacher to get the full story.

When John got home, we did our best version of “talking about it”.

I told him what I knew, and asked John if he had made poor choices.

He nodded yes.

I asked John if he wanted to choose or let me choose what “the valuable thing” was.

John told me to choose.

We worked on that consequence the rest of the evening.

On his way out of the door, he turned back to me,

unprompted,

and said, “sorry about percussion, Mommy”.

We again talked about how he needs to make good decisions next time.

Reliable Neural Pathway?

Every time.

That is what I want.

Not “sorry”.

He nodded.

So, this flow:

  • Decision,
  • Consequence,

    Neural Pathway to Keep

  • Plan for success next time.

No rescue.

Bet this happens again, and we shall be ready again.

I am sure we will see this “circle of life” a few more times.

Building neural pathways isn’t easy or fast.

But it does have to be steady, consistent and non-negotiable.

Special thanks to Philip Bergman, Family Literacy Network, for these concepts of the neural pathways.  (The drawings are mine.)

Perhaps this might help in your world.

Peace be with us,

Gayle

 

 

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Language Processing. Word Building. Phonics. Executive Function.

Interventions to Help a Kid Read: It is Possible. Not Easy. But Possible.

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Explicit instruction, via daily home practice. Family Literacy Network, once a week.

Components of explicit instruction in literacy, tools from Family Literacy Network. We do this daily at home. Not John’s favorite thing, but he now smiles when reading.

Even with his diagnosis, from the early days, we really tried reading together.

He seldom behaved like he liked to read, but we did it anyway.

Then there was kindergarten with 1-word flash cards.

I thought John could read words.

I wasn’t worried about dyslexia because John knew “b” from a “d”,

“q” from a “p”.

Language processing was a worry.  But specifically dyslexia wasn’t on my radar.

All things considered, I thought he was reading OK.

But, his fine motor function made handwriting a challenge,

and he has always struggled with math.

With his diagnosis of autism,

I had been busy with methylation, nutrition, sensory integration, motivation, social learning, ARDs/IEPs and behaviors.

I wasn’t thinking of academic diagnoses.

That’s a whole new vocabulary.

Academically, I had a false sense of well-being.

He was faking it pretty well, using a lot of little tricks.

Balancing, Interactive Metronome. Bi-Lateral (arms & legs doing different movements) integration.

Soon the words “dyslexia“, “dysgraphia” & “dyscalculia” entered our lives.

And we discovered he couldn’t retell the story.

Now what do we do?

Over the years, we have done a lot of home-based literacy (word-building, phonics) interventions:

  • Watch movies with the captions on
  • Watch movies of books we have read together
  • Read books of movies we have watched together
  • Our daily “list” of things to do, which we write together, read together, and mark off
  • Play reading games with road signs while driving

There were moments of joy, when I forgot to worry.

Surprisingly, John could read the cursive thank-you-notes he got from his teachers.

But John gets older, the academic components have become more complex, more urgent.

John really couldn’t sound out words.   Couldn’t retell the story.

I had to learn all I could about executive function, word building, working memory, literacy and critical thinking.

(Oh great . . . . . more interventions.)

Therapeutic Listening:  A learning intervention we have been using for years is therapeutic listening.

John would be in the car or on couch listening, processing whatever he was hearing.

Mostly calm, with occasional moments of alarm and avoidance/escape, as predicted by Rosemary.

Standing, Interactive Metronome, at Ability and Beyond OT. Working on all the pieces leading to sensory integration and executive function. John’s reflexes are retained and need help to become integrated and more sophisticated.

He wears the high-quality Sonnheisen HD 500A headphones & microchip player.

No electronics during the twice daily 30-minute sessions.

Calendar Awareness:  Funny thing, we struggle with hours and minutes,

yet he always knows the day of the week and the number day of the month.

I ask him when I need to know what the date is.

And he amazes me on his sometimes-perfect calendar memory of past events.

Executive Function & Whole Child Learning Interventions: 

John has moved from elementary to middle school.

We moved from conventional occupational therapy (OT) in a purely-clinical hospital setting to

Fast ForWord, (Vestibular) Astronaut Training, Interactive Metronome and much more

at occupational therapy via Ability and Beyond, in a quasi-clinical setting

(they have chickens).

All working toward better executive function, sensory integration, vision learning, auditory processing, impulse control and word building.

Explicit Instruction via Family Literacy Network:

We’re making progress in John’s phonetic awareness and word building.

John feels this achievement.

Explicit instruction.

Daily.

Leaving nothing to chance, research-based.

Oftentimes tedious,

Prone, Interactive Metronome, at OT with Ability and Beyond.

but building neural pathways purposefully isn’t easy, or it would already have been done.

Plus, John’s really enjoying their treasure box now.

(For years, treasure boxes have been like ice cream cones—–kid hell for us.)

Recently, he voluntarily indulged in 45+ minutes of highly-motivated reading.

I personally vouch for Dr. Eldo Bergman, M.D. and his team at Family Literacy Network. 

They can also accommodate out-of-town families.

We have also done Vision Therapy for years.

I learned recently of Magno-Cellular and Parvo-Cellular neural pathways (thanks, Dr. Davis), scanning and pursuits.

Published research links:

Additional literacy interventions (some we have yet to do) include:

Scientific Spelling at home

  • Neuhaus training, and specifically Scientific Spelling
  • Graphemes, Phonemes and Phonics (not as complicated at they sound, but you do have to do your homework into word building)
  • Orton-Gillingham (the gold standard for best practices)
  • LLI (what he gets at public school)
  • CogMed (we haven’t started this yet)
  • Reading Recovery (originated in New Zealand)
  • Reading Doctor computer apps (recommended to us)

I realize this is a lot to digest.

I am building a 2-hour workshop:

“Help! My Kid Hates to Read!  What Can I Do About That?”

Want to join?

The great news:

We are making progress, and John knows it.

I can tell by his face.

Let’s work on this together.

Peace be with us,

Gayle

 

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Sure, It Takes Longer When He Does It Himself

(Nonetheless: Back Off, Mom)

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Clean Pile

Recently, we started getting ready for a 5-day-4-night-gone-from-home camp.

Who’s in charge of packing?

Is it who can wait the longer?

We worked together on the gathering.

A big pile, pretty much what was on the packing list given to us.

Then he decided which shirts, shorts, and other stuff he preferred.

We used the process of elimination.

“Do you want this shirt or that shirt?”, etc.

Loading it all in the truck

Mom then capitulated, and was the one who wrote his name on everything.

We stuffed it all into the suitcase, plastic bag and backpack.

As a team.

And we talked about each thing he was taking.

He liked that he was getting a reprieve from taking nutritional supplements

and could eat anything he wanted.

He gets that freedom of choice each school day in the lunch room also.

When the time came to leave, he hauled all his gear out to the car,

opened the car with the keys, and

pretty much wallowed everything into the trunk.

Mom didn’t touch anything.

En route, he got free-roaming opportunity after lunch before the 90-minute drive to camp.

Practicing freedom to stretch his soul and his legs.

Six Days Later:

The pile was back, smelling a little worse.

Yes, Mom could have cleaned it up.

This dirty stuff doesn’t belong on the floor.

And John would have learned nothing.

Dirty Pile

Big brother Saxton gave John the laundry lesson.

Mom kept her big mouth zipped.

Later, the boys moved the wet clean stuff into the dryer.

So far, it is all still in the dryer.

Dry, but still there.

That’s now on his list for tomorrow.

Oh yes, we got back on the list the day he returned.

He expected it.

And he was overall pretty proud of himself.

The way it should be.

Hope this helps a bit in your world.

Peace be with us,

Gayle