Best Piece of SPD Advice by Patty

Guest post by contributor Patty Porch of Pancakes Gone Awry.

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There have been times as a parent when I have wished for a T-shirt that says something like the following: "No advice wanted."

OR

"Advise me at your own peril."

OR

"Warning: Any more advice may make my head explode!

Most parents receive lots of advice from other people. Parents of kids with special needs, however, often feel completely flooded with all the suggestions professionals, doctors, teachers, family members, and friends provide on an almost constant basis.

I know I have, and at times it gets more than a little annoying, especially when the advice is unsolicited or from someone who doesn't understand SPD. Worse still is when the advice comes from a perfect stranger.

Despite my sometimes defensive attitude towards advice, I have received some over the years that has proven quite valuable.

Hands down, the best piece of SPD parenting advice I have ever received came from my mother, a woman who, until my nephew and son were diagnosed, hadn't ever even heard of Sensory Processing Disorder. Still, she is supremely supportive and seems to have some really good SPD instincts.

T'was the Night Before an SPD Christmas

T’was the Night Before an SPD Christmas
By Patty, her husband and Hartley


T'was the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse;
The snack packs, arranged on the counter with care,
In hopes, on our journey we’d be well prepared.
The children were nestled all snug in their beds,
While visions of Chex Mix danced in their heads;


Ma in her hoodie, and I in my sweats,
were to put away pillows and therapy nets.
When in the back room there arose such a clatter,
I ran at full sprint to see what was the matter.
When, what to my wondering eyes should appear,
But a puzzled old man buried up to his ears,
(In scooter boards, swings, and small colored spheres.)
Poor devil had brushed ‘gainst our therapy stash,
When it came down around him it made such a crash!


He recovered with grace, so lively and quick,
That I knew in a moment it must be St. Nick.
"What is all this stuff that you people collect?
Are you Circus performers?”--the old man interjects—
“I came here with toys, for the boys and your girl
But looking around I think ‘what in the world?’


This room that would normally have children’s stuff
Is packed to the gills with equipment enough
To start your own CIA torturing session!
Tell me I’m wrong and you’re not!” (oh good heavens!)


My wife and I snickered and held out our hands,
And reassured Nick we’d had no evil plans.
“Our kids have a condition; they have a hard time—
They yell when it smells and they climb up the blinds.

Take Them to the Park

I find that I am always leery about going to the playground or the park with all three boys. I know, that kids are kids, and this is summer (will it ever end?), and that is what kids should do – play at the park. But honestly, it makes me anxious just thinking about it.

I am sure you’ve done this before – you get all revved up about going to the park, pack the fifty thousand things that you need to get there, spend the two hours getting everyone dressed and ready (probably not yourself, I mean, you don’t have time to actually shower), pack the juice boxes and the change of clothes, the snacks and the kites, and get in the van.

Now, you are driving to the park, going over with your kids the ‘expected behaviors’ that they should display while you are there, reminding them of their good social skills, how to wait for their turn on the swings, the need for them to stay with you, and that they have to stay out of the water, and away from the roads, and then there is of course the playground staple, “Use your words", which in kid speak translates to ‘don’t hit’. And during our drive, I also add for my semantic-loving kids “That goes the same for kicking, or yelling, or biting, or shoving, or pushing, or tripping, or touching anyone else – AT ALL.” Pretty much letting them know there will be no fun at the park. Period.

This is when it hits me: I am taking ALL THREE BOYS to the park alone. There will be PEOPLE there I don’t know (and don’t know my kids). And that means there will be JUDGEMENT.

Right?

I’ll be honest here, I don’t really care what other people think of me, or my kids, or my parenting – truthfully, I don’t. I have been around the block enough with these kids to know that the strategies I am using now aren’t perfect, but they are the best I’ve got (and I have a list of doctors, therapists, psychologists and counselors as long as my leg to prove I’ve tried MANY things). So, if the woman at the park wants to roll her eyes at me because I let all three of my boys act a fool climbing up the tunnel slide, running into each other while sliding down, then so be it.

But could she PLEASE do it somewhere I don’t have to see it?

Do YOU Have Sensory Issues?

I had the most amazing time talking to Lisa Davis at It’s Your Health Radio this last week. It was truly like talking with a good friend – we laughed, and exchanged stories about our kids and our husbands, and of course talked a lot about Sensory Processing Disorder and my book This is Gabriel Making Sense of School. But the best part? Laughing about our own sensory issues.

Yep, that’s right, turns out that we as parents of SPD kiddos seem to have our own sensory issues. Just call me Captain Obvious.

There is always time to chat about our kids, and exchange stories about their therapies or quirky and funny behavior, but how often do you actually talk to another sensory-mom about yourself? Never. I know.

So, when Lisa and I started laughing about our childhoods and how those little sensory quirks of ours are playing out in our kids, it was just a blast. And, I wanted to include all of you in the discussion too!

When I was a child I had definite sensory preferences that lean towards being defensive (Nick is exactly me, but I ate more than peanut butter). I needed to have my socks just right, no itchy tags, definitely no screen-printed shirts (that feeling was AWFUL on my skin!), I wore my jacket inside during the winter, I learned to self-soothe by rubbing my feet on my sheets and shoving them under anything heavy (my hubby’s legs are my fave now), I hated certain food textures (like peas, lima beans, olives, mushrooms) and to this day I can’t stand loud noises.

I am definitely more auditory defensive than anything else these days – it is like I have the capacity to handle a certain amount of noise, and once it is reached, I am done. No additional background noise, no crowded places full of people moving and making noise, and by rule, no electronic or battery operated toys after 4pm.

I also have to out myself here and say that I hate to brush my teeth. I just hate it. I hate the taste of toothpaste, and the feeling of the brush, but the thing I hate THE MOST is the feeling of all of that spit in my mouth that I have to hold there while I brush. Holding the spit in to brush over the sink is IMPOSSIBLE. I will gag, and throw up. Truly. As embarrassing as it is, I just can’t do it. And don’t get me started on mouth wash – same problem (spit in mouth) but worse.

1001 Great Ideas -- Interview & Giveaway with Ellen Notbohm

During the first week of school last year, Nick’s Kindergarten teacher walked up to me, and almost under her breath like we were about to share a secret she said, “Do you know of any good books on how to teach a child with Autism?”

And sheepishly I said, “No.” Quickly followed by, “Not off the top of my head, but let me look into it.”

I was disappointed that I didn’t have a go-to book to recommend. I should have immediately known what to suggest to her – something that would be succinct, easy to understand, quick to read, effortless to implement and even more important – well organized so that she could go back week after week and year after year to look up what she needed.

Well, it took me all school year, but I finally found my go-to book: 1001 Great Ideas for Teaching & Raising Children with Autism or Aspergers by Ellen Notbohm and Veronica Zysk – Not to mention a foreword by Temple Grandin, PhD who says the book is “Genuine, commonsense advice that all parents and educators can quickly and easily use!”

And who argues with Temple Grandin? Surely not me.

I asked Ellen Notbohm, who has also authored 10 Things Every Child with Autism Wishes You Knew, 10 Things Your Student With Autism Wishes You Knew and The Autism Trail Guide: Postcards from the Road Less Traveled, if she was available for an interview, and I was thrilled to have her say yes. I mean, really, this is a woman who has 1800 great ideas on how to help my kids – this rates right up there with a new handbag and a kid-free vacation for me!

Now, normally I’d say you should take notes, but with 1800 ideas jam packed into this book, Ellen can’t possibly rattle them all off here (no, really, she can’t). But, good news:  Future Horizons has offered to give away a copy of her book! Look for details on how to win at the bottom of this post – or if you aren’t that patient (like me), hop on over to Future Horizons and buy your own copy now.

Either way, you are in for a treat!