Advocate Psychology for Special Needs Parents

 I have been a special needs parent for 17 years now. My "kid" is an now an adult. I've debated about continuing with posting and decided that I will, but veer more to the parental side. I want to respect my guy's privacy, but there are so many new parents starting this hell of a ride, as well as those looking at that post 18 years old transition we are currently navingating. I still have thoughts, things to say, and info to share.

Allons-y! But first, some humour. 

Here is my approach to IEP meeting prep and crafting email messages, requests, and responses (after the initial emotional outburst). Each day, every day. Sometimes continuously, from the time I wake up until the time I fall asleep where I am sitting.

With thanks to all the brilliant folks at Pixar.

Espresso So We Can Forte

It's Friday! Made it through another week. Luckily there was strong coffee in my actual Peet's mug, as James did not want to get out of bed. He was snuggly rolled up like a burrito in a blanket on his freshly laundered bedding, loving the heck out of his bed. It would have made a great commercial. School and work wait for no one, however.

I gave James 10 minutes to rise and shine on his own (he has started to do this, so I keep trying to encourage it). All the while I am sipping down java, getting out his breakfast, and revving my parental mode. Thank goodness for our morning routine. We both know what's coming - James is the teen fulcrum, waiting for me to lever him into starting his day and getting out the door on time.

The saving grace in all this is the flexible work schedule that allows me to relax enough to match James' playful mood - thank goodness he is rarely cranky or surly in the morning. He knows once I arrive in his room with the morning hygiene kit that getting out of bed is now inevitable. He good-naturedly picks a new shirt for school and puts it on as we start the routine.

Breakfast is consumed, with a few testing skirmishes on his Kindle. We assemble his lunch and I make sure his reading log gets into his backpack so he gets points for this work. The van pickup arrives earlier than it has all week, coinciding nicely with the garbage truck roaring around our block on it's pickup run.

Without any prompting, James takes his meds. I acknowledge this with a "Great job - I really appreciate your hustle this morning" and bundled him into the van with him still in a playful mood. Inside, both my fists are in the air and I am silently shouting "Yes! YES!!!!"

Because yesterday, it was me chasing him around the house, bad word scripting galore, over the course of 5 minutes before he grudgingly took his meds. Looking forward to the weekend!

Autism Parenting While Sick

 Okay, my second COVID-19 dose (Moderna) is taking more out of me than I wanted. Thus I am doing something I have not had to do for over a year: Parenting while sick.

As per usual, parenting a child (or teen) from your sickbed s a lot like normal parenting, only more so. I have experienced several varieties of this: married, with a toddler and preschooler. on up through the ages as our marriage broke up, until I was single parenting it across two households.

I found several useful strategies - many of which are captured in this nifty article: "Mom Is Sick! How to Parent Like a Champ When You Feel Terrible".

Cleaning standards were relaxed to a ridiculous degree. I fell in love with our washer dryer (and I am eternally thankful that I did not get sick at the same time my son did when we lived in an upstairs apartment with coin-op machines below that were not often free). Dishwasher? I love you too (when you worked)! 

My folks helped too, but my dad was not in the best of health, so we had to be careful. Their grocery drops were lifesavers. I was not able to connect with a lot of moms and we moved out of my former support network, so while help from friends did happen, it was not often.

I am proudest of the times (years ago) that I could set up a reading tent or get this kids to set up blanket forts while playing with me lying on the carpet nearby. There was also blanket time on the sofa with way too much Nogggin TV. For several years, James' big sister was amazing with taking over as activities coordinator and bringing me my water. 

This time: We each have our own bathrooms - thank you, thank you! Our new place is small, so we can yell encouraging things to each other through the walls. Thanks to the pandemic - I have a stocked pantry and home deliveries are still widely available.

ABA is also on hand, coordinating goals to help clean the kitchen a bit and keep himself on his school schedule. Tomorrow is supposed to be an in-classroom day. Ummmmm. We'll see.

I hate being sick when my kids need me. I now think about what will happen to James when I am not here ... and make another note on my pad: "Transition Programs, etc." - because, yeah.

Spectrum Parenting Tip: Rain With Fireworks

We live in Northern California where, compared to much of the rest of the world, we don't get a lot of Weather. That means that my son on the spectrum and daughter with sensitivity issues have not had to deal with a lot of rowdiness from Mother Nature.

About 10 nights ago, an unusual collision of weather fronts took place, with explosive results overhead (see video above; video courtesy of Michael Matson). I've been through storms like this, but not here, or with my kids. As things ramped up, both kids woke up, afraid. My daughter I could hold, and explain some of the science behind what she was seeing.

My dilemma, how to communicate with James. When he gets anxious, he tends to repeat things blindly and not listen to me. Lately, his innards start churning when he gets too anxious; if that state continues too long, he will become physically ill. Both the repeating and churning were going full force. I desperately was trying to think of a way to get through to him and explain what was going on as well as to reduce his anxiety. Autism ... visual ... concrete, literal understanding ...

Then I thought of something good to try.

"Hey, James - James! Remember Disneyland? Remember the fireworks? The bright lights and loud explosions? This is rain ... with fireworks!"

And it worked. Holy cow!

Boom! From right outside our room at the Letter Q Hotel.

For him, the storm then went from scary to Disneyland fireworks, with rain, right outside his very window. What an strange reason to be glad the kids have been to Disneyland so many times. But I'll take it.

The storm was a good one, by the way. We had lightning strikes a few blocks from our house. Power went out, and the house shook. A few times the bolts and thunder were instantaneous and huge. I was up for a good 2 hours, which is freakishly long for a T-storm in our area.

Both kids went back to bed after an hour, as soon as the main show was over. Even the car alarms going off didn't really bother them. After all, they're used to that after a fireworks show, and that's what they do when on vacation at the Letter Q Hotel, right across from Disneyland.

Mothers' Day: Priceless

I am typing this from the backyard, listening to the birds twitter and call, smelling the approach of summer and retreat of this morning's fog, savouring my coffee (French roast from Trader Joe's and Peets' Anniversary Blend). I've just picked the first cherries off our tree and popped them in my mouth; they are delicious. Sometimes moments happen and some you just need to make yourself.

I am not a food bowl!!

The cat woke me shortly before 7, prowling for food and a playmate. I was so tired, I poured his kibbles on the nearest flat surface, a MagnaDoodle. My reprieve was short-lived. I heard James stirring, which was my signal to use the bathroom before he announced his waking state to the house and started a loud search for me.

I had been promised breakfast in bed. Unfortunately, my kitchen crew was still sleeping in and catching up on some much-needed rest (curse you, allergies!). I was hungry, so James and I hopped in the car and drove through the low-lying fog to Trader Joe's, where the flowers are gorgeous, the blueberry muffins plentiful, and prices are extraordinarily reasonable. First, though, I had to shut the cat in the garage, as he can't be trusted to not raid the garbage can.

We returned triumphant to a still-sleeping house. James graciously shared his muffins with me and I made coffee. Mmmmmm, liquid ambrosia!

I called my mom to wish her a happy Mothers' Day. We did our usual cell-phone shuffle and my cheek hung up on her once, but we connected. She is such an awesome mom. Every year I appreciate her more, and feel the least I can do is hand her some "Ah-HA!" moments of maternal payback when I talk about how my kids are doing. Kidding! Sometimes.

Meanwhile, coffee in one hand, cell phone in another, I am being presented with a DVD disc (dripping with hand cleaner) by James, who is urging me to clean it, because "it's dirty, Mommy." I finish my call and coffee prep, turn and find he has already inserted the dripping object into the DVD player and started to howl because "it's not woooorkinggggg!"

I whisk out the DVD, wipe it, and shut down the player and TV before telling James to NEVER put something wet into a machine. I explained we needed to let the DVD player dry out now and he had to find something else to do. He picked up the MagnaDoodle and dumped the kibble off it, while telling the cat he was bad, using his angry Dinosaur Voice.

Hello, chickens, so nice of you to return home. Like that roost, eh?

I took several deep breaths and directed James in the cleanup of said kibble. We then got to a more peaceful state by taking turns at playing Angry Birds Star Wars and "getting the piggies."

The Girl Child awoke somewhere around 9:15, disappointed that breakfast was behind me. She presented me with a slightly whacky plant and container from school, a Mothers' Day greeting sign taped to her back, a pink poodle & child diorama (complete with the note that "every mom [instead of 'dog'] has its day"), heart magnet, and a coupon for a free makeover (courtesy of Girl Child -- her manicures are divine).

She also presented me with a delightful concoction of her own design: apple cinnamon toast. It was so good with my coffee! Our daughter has a strong sense of whimsy -- she cut and arranged the apple slices into a smiley face on the toast. When I bit into it, we got the giggles, because now it resembled zombie toast.

My day is looking up.

Daydreaming of Better Behaviour

I was reading an article about how different (and better) things could be with moms running the country than our current congress. It had me nodding in agreement because many times, while raising our kids and trying to instill honesty, responsibility, and compassion in the children I am caring for ... there's a bitterness in the back of my mind that comes from knowing that many of the people elected to represent their fellow Americans largely chuck all that out the window, preferring instead to bicker, grandstand, and name call.

Many are the times I read an article describing to me incredibly irresponsible, dishonest, and uncaring behaviours by those who, I am sure, were raised to behave better, and find my hand itching for my phone, so I can call their mothers. Part of me would dearly love to say "Did you know what your son/daughter is doing?" Now, I know that parents are no longer legally responsible for the actions of their adult children. That there are some who get a good upbringing, and chose to follow other paths.

This is an overly simplistic  mom dream of vigilante parenting gone back to my roots. Indulge me.

• I would love to be able to Pink Slip members of Congress. Capitol Hill would be swamped in a pink snow storm about now.
     
• There would be several new Time Out rooms, and they would consist of white walls, a hard chair, and one light bulb. Maybe a desk, where they could write their notes of apology.
     
• There would be lots of community service assignments to womens' shelters and rape crisis centers, with lengthy essays turned in afterward. Any spelling or grammar errors would results in corrections being written 50 times each on college ruled binder paper.
     
• Insults to the president would trigger mandatory lavatory cleaning at a large public transit agency.
     
• Not doing their jobs? No salary for that week.
     
• Did well at something? I'll put it (or a photo of it) on my fridge and brag to all.
     
• Did you steal or misuse money that was not yours to spend? Pay it all back, and you are so grounded for the amount of time that corresponds to the level of crime. Say hello to the Time Out room, because you will be writing a lot of letters of apology. Also, you are Habitat for Humanity's new poster child for volunteer worker.
     
• Shunning and Shaming would be new departments that have control over campaign and election funds. This is an overboard daydream, remember.
     

Oh, I could go on. But that's more for a Moms' (or Parents') Happy Hour. Meanwhile I am doing my best to show the next generations that getting along, problem solving, and being responsible/accountable are the indeed the "grown up" way to be.

Paging Dr. Mom ...

James had another awesome session at school yesterday with his favourite substitute aide. Unfortunately, he somehow picked up a ginormous wood sliver. That puppy was solidly embedded in his palm. As the school personnel are legally not allowed to remove slivers, James requested to self-medicate by using the iPad in the O/T room until pickup time (about 20 minutes), when Dr. Mom would be available for an afternoon appointment.

First I tried squeezing, without results. Then I tweezed of the fattest bit, closest to the opening. I had to go after the last bit with an Exacto blade, and that's when James objected (luckily, after the fact).  I was able to the extract that last devilish bit and slathered the wound with Neosporin.

Just call me Dr. Mom. I graduated by the seat of my pants from the school of Hard Knocks. I am working toward my degree in Autism by the Skin of Our Teeth.

"No Bandaids!!!"

Special Exposure / Wordless Weds: Snow!

Although our temps have regularly been in the 20s, it's been clear. So disappointing for my daughter, who would LOVE to be out in a snow storm, or at least a couple of flurries. Snow is strange and wonderous for her.

Our schedules at home have had to shift majorly twice daily to get Daddy down to the commute bus in the morning, well before school, and pick him up after dinner. It's an hour's round-trip each time. And on top of it all, I am trying to catch up on groceries, birthday, and Christmas preparations that I never got the chance to do over the past 2 weeks. I made it to the gym exactly once, which is dire for me. Some days the kids have spent 3 or more hours in the van. I am trying to make things as fun as possible and keep the holiday magic going, at least for the kids and I.

How fortunate that our town has a grove of 150 decorated Christmas trees at the Town Green, and that twice nightly, it "snows" in a certain part of the grove. A couple of times I have taken the kids there after a dinner on the go, so they could have half an hour of fun outside before another round-trip down the freeway. The joy on their faces goes a long way to soothing my heart right now:

 

For more images from the heart, and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.






                ... and Wordless Wednesday.

This is What It Looks Like

I and other parents talk quite a bit about how how things that are straightforward for other parents often aren't for us, and about how that makes us feel isolated and saps our energy.

 This is what it looks like -- waiting 15 minutes as the entire school parades around a 1/4-mile circle to see your child in the Halloween Costume Parade:

... only to realize your child is not there. Other full-inclusion kids are, but yours isn't.

I tried not to feel hurt and reminded myself it was time for his speech session, which is very important for him. Still, it was a sinking feeling.

This is your son when you try to help out in class. He's way in the back of circle time, freaking out and crying, because Mommy only comes for drop-offs and pickups and now she's Right Here in the classroom. What The HECK Is Going On?

I expected this and remained calm. It's hard, sometimes. Especially as I've helped out in classrooms for my daughter and never got this reaction.

Lest this turn into a pity party for one, this is what it looks like, when your child on the spectrum adjusts to having a parent pop up unexpectedly and join the school day.

... because his teacher and aide also remain calm and welcome all parents to help out in the classroom. Here is James, doing the craft project that I was running during their Halloween party. He made a treat bag by writing his name one it and then stamping Halloween designs on the front and back.


And this is what full inclusion can look like:

Two guys sharing free time together. Having fun.

These are the times that keep me going.

Derailment and Change-ups

I'm just getting back from a good 3-week fight against a sinus cold. It's sapped my strength and threatened to turn into an ugly sinus infection. Exercise meant trudging to the bathroom and blowing my nose. Victory was getting kids to/from school on time, with lunches & completed homework. We won. Barely. Go, us!

In the midst of this haze, puffiness, coughing, and exhaustion, North Bay Regional's past referral sent us a good fairy from California Parenting Institute (or, CPI, as it's commonly know around here) to help.

Oh, how we needed her. We just didn't know it.

First, there was the relief in talking to another adult. One who's mission is to help parents become better parents, regardless of the background story. Second, it was extremely helpful to have someone ask focusing questions about concerns and goals. Third, hope was renewed in defining said goals and realizing that I could indeed make some basic, small changes and renew commitment to make our time less ... well, dragging. Focus. Focus is a good thing.

Together we came up with some simple play activities with which to engage James. Because he cannot focus on anything on his own except TV, computer PBS kids games, or (occasionally) a book. This has been making feel as though I was losing my mind, because I can't DO anything else when he is home. Also, I know that plugging him into electronic media is a bad idea, because he does not transition well away from it.

What ideas did we come up with? Well, simple ones, like:

2

coin sorting ...

helping him play with his trains ....

and working on colouring projects, which also help as a connection activity with Dad

what I love, is me recommitment to taking the kids with me to the gym, so I can get in some exercise, steam room, and TLC while they get to play and do crafts with other kids. The kids also like the possibility of getting some frozen yogurt at the cafe.

What makes me even more grateful for this change-up in our daily routine is that I fell off the wagon and went back to our old ways one day and discovered what a hideous contrast it make for me, when compared to the new changes. I am sold, happier, and more hopeful. Also, so thankful that this service and these people are here and available to help. Even though I think of myself as lucky, caring, and smart, I certainly need this help!

Social Acceptance, Isolation, & the Big Picture

Here's a thought for today. I was reading The Mommy Blog and Mindy's post regarding the job description for Parenting (aka "Youth Manager Position"). It's very funny and well-written.

This main description caught my eye: "Responsible for managing mostly small humans (1 to 10 at a time) within the constraints of scope, quality, time, and cost, and working within established Child Protective Service policies and guidelines, to nurture and groom offspring for acceptance in society at large. Also, anything else the wind might blow your way."

Let's look at that phrase again: "groom offspring for acceptance in society at large."

Wow. That gave me a lot to chew on. Especially after dinner, when I spent a couple of hours at a parenting class for parents of special needs kids. And it brought to mind several things:
* My parenting reality is different from society-at-large
-- So what?

* Yes, I want James to be accepted by s-a-l (while maintaining his uniqueness)
-- Don't we all want this?

* My definition of society may not be James'. His world may encompass the same range of people and exposure to the world in general. Or it may not. Is that bad? I don't know. Would I be disappointed? Probably a bit, but definitely if James was unhappy.

Tonight in the class we talked a lot about the isolation felt by parents of children with special needs. How well meaning friends and relatives (and indifferent ones) just don't get it. How the little things can silently build up and start smothering you in depression, guilt, and loneliness. How those sideways, funny/startled looks you get out in public can just stab you in the heart and get to you.

In many ways, James is lucky. He likes other children and they like him. I hope this stays true for him all his life. I know he will have difficulties. He's already smarted a bit from been left out in a social situation. But I keep faith that our grooming and his sunny nature will make the social meshing a mostly positive experience.

The other thing I took away was that we are all parents and trying to do our best. I truly believe that all loving parents share many challenges, griefs, and joys. It was very good to have a place to unload and talk (and cry) tonight about some of the special needs-related things we'd been through.

I am reading that job description list again now, and find myself laughing at "Formal child development education and/or progress toward certification of competence (provided this takes place solely in your head and does not disturb other moms; they are very busy finding their own way, blindfolded and handcuffed, through a minefield in a blinding snowstorm. Barefoot.)" Aren't we all? Shhhh!

I may never get to some of those other bullet points with parenting James. For now, that's okay. As long as we're making progress and he's leading a good life I am hopeful for his future and our journey.

(PS: The sentence "Also, anything else the wind might blow your way" = priceless and oh so true.)

Transitional IEP

Today brought something I'd been hearing about for the past 2 years: James' Transitional IEP as we start planning in earnest for Kindergarten this coming Fall. Compared to some other things we'd been through, it was mild and not the big verklempt moment that I'd been expecting. I am assuming now that will start hitting me mid-April, as we begin to prepare for James to leave his loving little preschool environment and head out into the larger waters of KinderOcean.

It helps that the meeting was held at the school my daughter currently attends, and that it looks as though services will be maintained in a full-inclusion environment. Although nothing can be finalized until all forms are completed, signed, and triplicated with blood offerings. Made that last part up -- I think.

What a difference between then

and now

Special Exposure Wednesday

And yes, it's still Wednesday.

Here is a picture of James from last Wednesday. He got bored & quietly opened some kitchen cabinets. The cotton balls in the egg carton that bored him to tears in May is a hit in July!




Oh, I am so proud of how far he's come in the past year! When I see him like this, enjoying life and quietly pursuing more, I just want to hug him and give him what I can for his shot at a happy life.

For more about Special Edition Wednesday, check out their page.