special education – Lessons Learned

The SPED Classroom: COVID-19 Edition

As an academic, I find comfort in relying on the expertise of others. Facebook is filled with teachers, mothers, and therapists with wonderful, color-coded ideas. But, we are in crisis. I need more. I need high-level experts with a following that traverses over space and time. Right now, I’m looking to the muses:

Mr. Rogers, the social-emotional muse, is famous for his tagline: look for the helpers. That’s no help for me. I live with one who is a great help to the community as a paramedic but not the most helpful co-teacher for e-learning. What is helpful is the decrease of anxiety that comes from Mr. Rogers’s habits of greeting me at the door, changing his sweater and shoes, and starting the day.
Maria Montessori, the educational muse, created an entire system based on naturalistic learning.
Tim Gun, the creative muse, motivates amateur designers to tap into their creativity in order to figure out how to use the unconventional materials of plant fronds and chainmail with chiffon to make a red carpet look. His tagline: make it work!

Mommy Title Mash-Up

I have written a lot about being a working mom and having a special needs child to keep it interesting. When the days all run together, and my time at home is also my time at work, I need to find ways to have more impact while doing less. Here are some ideas that help satisfy SPED goals that relate to occupational therapy (OT), speech/language therapy, and social work.

Post-it Note schedules: you can get as colorful as you want. You can designate yellow for foods to eat, pink for outdoor activities, green for Daddy’s tasks, etc. The goal is for each family member to participate by writing words, phrases, or pictures of what needs to get done on a daily basis. Older kids can arrange their “sticky schedule” while grimacing through brightly colored additions parents include.

OT: writing/drawing, pulling off one post-it note for fine motor, rearranging post-its to cross the brain’s mid-line
speech: “wh-” conversations to understand what goes first? why? where does the post-it go? where should the schedule go? where should the work get done?
executive functioning: organizing the day, prioritizing activities

Jacob cleaning the kitchen floor at 3!!!

2. Household chores: anything that makes my back, neck, and shoulder ache is a great new task for Jacob. At an early age, we recognized the need to keep his engine running in a productive direction. He works the products in the Swifer family like an Olympic curling champ. He also learned to put clothes in the hamper, bring it down to the washing machine and load it. Now that Jacob is older, he helps unload the dishwasher and puts his clean clothes away. Frankly, little orphan Annie had it easier. I joked I was making him earn his keep, but it turns out I have been a closet Montessori teacher. The nice thing is how all of these chores target Jacob’s IEP goals in some way or another.

OT: pincer grip required to empty the dishwasher or pull one sock at a time from the washer builds the hand muscles needed for writing , cross the brain’s mid-line by requiring him to reach across his body to grab the silverware, forcing kids to put things away top left to top right and then progressing down mirrors how the motor plan for their eyes for reading
speech: more “wh-” conversations to understand what goes first? why? plus sequencing what to do first, sweep the floor before attaching the wet wipe to mop, is needed to develop skills for reading,
executive functioning: putting the silverware away categorizes the brain
social work: whose turn is it? how do you cope with the frustration of not being able to get your fingers and arms to do the right thing?

3. Dance! If you have read my blog before, you have come to understand that our mental health is rooted in relishing our childhoods while embarrassing our children. You have also read my growing fascination of neurobiology and how music does more “than save our mortal soul” (pause to love Don McClean’s “American Pie”). So many of our SPED kids get movement breaks in school, but we limit them to Cosmic Yoga or painstakingly slow breathing exercises. Moms, it’s time to break out the bar mitzvah videos and Electric Slide (boogie, woogie, oogie). Then, Cha-Cha Slide before you level up to the Cupid Shuffle and dare to judge your physical health to see if you can Tootsie Roll. (Reward yourself with many candies of the same name if you pull that off without pulling a muscle.)

OT: motor planning is key to all of these dance moves, plus they repeat giving kids a chance to practice a motor plan over and over
speech: a receptive speech challenge for sure, but with corresponding video or Mommy-model resources, kids are using a real life Boardmaker app.
social work: modeling it is okay to look and feel silly is key for our kids who struggle with nuanced emotions like embarrassed or uncomfortable

Spark Note Summary

The COVID crisis has given us more questions than answers. My goal is to let that discomfort be okay. The beauty of everything being different and new is everything HAS to be different and new, like a “make it work”moment with Tim Gunn. E-learning is not education. Shelter in place is not an opportunity to try being a stay-at-home mom, Pinterest mom, or mom who masters the work-life balance. Shelter in place means to accept YOUR place. Continue to do the best you can, with what you have, at any given time. I’ll follow Mr. Rogers in creating the habit of sending you ways to live and learn…

A Special (Education) Back to School List

Mothers everywhere are filling carts and baskets with new binders, matching folders, 24 pre-sharpened #2 pencils (seriously, this is on our list), and a planner to help with homework that none of our kids will use. Nearly $150 later, your child is ready to go back to the routine they hate and we love. It’s pretty standard practice: one child, one class, one massive Target receipt.

But, if you are the parent of a child who has an IEP, back to school gets a little nerve racking. Special education (SPED) has a high turnover rate. Our well-intentioned, highly qualified classroom teachers leave the profession well before their general education counterparts. And, they are just one piece of our child’s puzzle. Speech pathologists, occupational therapists, and those wonderful aides who guide our children one-on-one into general education settings change classrooms and districts leaving parents incredibly anxious about who will be on their child’s team for the next 180 days. So, like most of our experiences with our special children, we have more work to do to get ready for school. Don’t worry, SPED parents, as your friendly neighborhood advocate, and SPED mom, I have some tips and tricks for you.

Three More Things To Add To Your Supply List

The goal for the beginning of the school year is to create an easy transition from the lawlessness of summer to the structured days of fall. It is our job to make sure our children are seen as students, not qualifying diagnoses.

Get new Releases of Information (ROI): That precious paper that allows your school team to coordinate with your private providers needs to be completed at the start of every year. All children benefit when they receive consistent messages from all adults. It takes away their superpower of “that’s not how my teacher does it” when we try to help with homework. SPED families rely on multiple experts to help our children thrive in school. But, some work outside of the educational setting. Parents need to provide schools with NEW releases every school year. You can often find these documents by navigating through the district’s website. Then, sign one release for each outside provider, including your advocate, to send to school on the first day.
Create a brag book: You need to tell your new team all of the amazing things your child has learned to do when not challenged by academic goals. Climbing a wall, blowing bubbles in the water, and playing
Jacob (circa 2017) facing sensory issues, literally head to toe, to climb a wall.
superheroes with cousins. My son learned all of these skills over a summer break. As an advocate, I can translate these accomplishments to match his IEP goals. Climbing grew core muscles needed for posture and attentiveness. Blowing bubbles showed ability to create shapes needed for speech goals. Playing superheroes showed imaginary play skills with typical peers that checked off his social work goals for the previous years. SPED parents get trapped in a vicious cycle of highlighting deficits that keep justifying our minutes with specialists. Let’s start the year showing off what our kids can do and let the experts re-draft goals and elevate expectations to match.
Re-order your day: Use the last week to mirror the demands of a school schedule and classroom expectations. In a presentation about kindergarten readiness, I give parents a simple directive, “Raise your left hand,” but mandate they wait 3 to 5 seconds before complying. The discomfort is palpable. Far from a sadistic exercise, this experience shows parents how long it takes typical children to process a request and respond properly. Our special students may have real challenges processing information or managing the sensory expectations that come from performing tasks. But, as parents, we forget to give them the time necessary, more than the 5 seconds needed by typical peers. We tend to get overwhelmed with getting from school to…gymnastics, the grocery store, and home in order to eat, play, bathe, and get to sleep at a reasonable time before repeating. (Normally, I would create an exaggerated fictional scenario to make a point. In this case, that is Jacob’s Monday.) Start having your student independently get ready for errands and complete multistep tasks as a great back-to-school crash course.

Spark Note Summary

A lifetime in the classroom followed by a new lifetime as an advocate means I have spent 4 decades on an academic calendar. So, this month is REALLY the start of a new year with new hope and promises to make this year the best one yet! Most of us special parents know that just means trading one set of struggles for another one. But, with fingers crossed, I’m hoping these back to school tricks will start your new year off with one less stress on your back to school list.

Parenting Inside Out: Raising a Child on the Spectrum

North Shore Moms. Working Moms of the North Shore. Mommy Needs Vodka. My Facebook feed is a mini-map of my top priority, surviving motherhood. It’s hard for everyone. We question every decision we make starting from the first labor pain! Natural labor or C-section? Breastfeed or bottle feed? Stay-at-home or working mom? We face all of those life-changing decisions before we even see our precious baby’s face.

My favorite pastime is now my only exercise.

So, we put up human bumpers to give us comfort that our parenting decisions won’t send our kids to the gutter. Our mothers, our friends, pediatricians, and the entire parenting section of Barnes and Noble give us peace of mind that we are not alone in our parenting paranoia. There is a comfort in our mommy networks; we are all following the same path. Until, of course, your child catapults you to a whole different kind of path.

Turning Things Inside Out

Going UP the slide. Autism or silliness? Neither. It’s Jacob!

First, he stopped saying, “Bless you,” after we sneezed. Then, he flicked lights in every room and stared at the ceiling. I didn’t need to compare Jacob to his peers to notice he wasn’t a typical two-year-old. The diagnosis of autism wasn’t a shock. But, since there are countless shades of the autism spectrum, the shock comes from a constant bombardment of experts, and those with expertise, getting it all wrong. You know who gets it right most often? The dynamic duo of Mommy and Jacob! Jacob has always had an incredible, creative way of combating the overwhelming sensory noises and challenges expressing himself. It just took me some time and education to translate those skills. The trick: balancing the world inside and outside.

The Pull Inside

Many autistic kids spend their lives in their own world in fierce opposition to our drive to drag them out. (Insert anecdote about Jacob’s lack of interest in being born in direct contradiction to my need to evict his 8 lb., 4 oz stubborn body.) It turns out that Jacob’s insistence on crawling under a table or in my lap was his way of coping with a stressor from the outside world. My job wasn’t to drag him into, what he perceived to be, a dangerous place. I learned that I just needed a passport into his world to assure him he would be safe, so he could grab my hand, and join my excitement into our shared world.

But choosing which world is safe, the inside or outside, is not easy or consistent. Parents with autistic children tend to sequester ourselves in our homes because there is a tremendous amount of emotional pain when we give in to our natural tendencies to compare our children to the others. Jacob and I love the playground! But, it’s hard to maintain focus on his shining, smiling face when he is only swinging for hours to get his sensory needs met. It’s also hard not to wince when there is a toddler baby-splaining the design of the playground to his parent when your four year old has yet to tell you his favorite color.

There is also an autistic insider’s secret world of experts with strange language and letters after their names. Suddenly, a typical kid’s demand for cookies is an autistic child’s goal of “manding for a specific item” that must be graphed and documented. (Truth be known: the autistic kid is always going to get the cookie because they have impressed you by asking for “cookies in the blue box” when the speech goal is still trying to use 3-word sentences.) Sadly, the secret language of autism and ABA therapy, added to the specialized school staff and rules governing an IEP make you feel like YOU, the most intimate warrior for your child, is the outsider. It’s hard, but it is precisely in those moments when you have to use your Tiger Mom roar to get through to those on the outside.

Giving the Outsiders Inside Information

It doesn’t take long to remember that, diagnosis or not, you are the expert on your child. It does, however, take a long time and an unrivaled well of emotional strength, to make sure that message is received. You spend hours cycling from angry tears to irate emails trying to get the world to see YOUR child. On good days, I joke that at least I have a reason for my son’s behavior where other moms just roll their eyes and blame their child’s poor decisions on paternal DNA.

Jacob’s memories are in movies and music.

Now, I challenge everyone’s conclusion that my son’s behaviors are “because he is autistic.” The common autistic behavior of scripting, medically defined as echolalia, was a great example of a teachable moment for Team Jacob. Singing during nap time got Jacob kicked out of his preschool. The outside experts in early childhood became concerned that Jacob’s inability to stay quiet while peers napped was a consequence of his autism requiring a level of care the facility did not feel they could offer. I confess: I deferred to their outside expertise. Then, I listened to the songs and movies my son was scripting. They were all about Jacob’s thoughts and feelings! When he wasn’t singing songs like “Happy and You Know It,” he was changing the lyrics (of “Down By the Bay”) to “If you ever see a Jake, eating some cake.” A typical kid may have been babbling aloud about being happy at a recent birthday party. My son sings about it!

Spark Notes Summary

You know how they say you become a new person every 7 years because you shed a layer of skin? We look the same on the outside, but we have grown immeasurably on the inside. Jacob is only 6 years old (I’m an overachiever), but I’m a new mom. I’m Jacob’s mom. Yes, Jacob is autistic. He is also a huge fan of Blaze and the Monster Machines, can identify each planet by picture, and enjoys a dance party with his mother every day after camp. If you want to know anything else about my autistic son, ask me. I’m the expert.