The Acronym Train

I can’t believe it is happening again. But it is.

I have been aboard the Acronym Train stopping at each station for a new set of letters for years now. We have visited stations like OCD, ODD, SPD, GAD, PDD-NOS, MD-NOS, BP and now my train is heading to a new station: ADHD.

Yes, the day has come for a new stop at yet ANOTHER letter station. It is time for me to take Gabriel to get evaluated for ADHD (Attention Deficit Disorder – He is not hyper, but who knows what the test will show).

This isn’t a revelation – that Gabe has ADD, I have always known this. And I have always said that actually having that diagnosis would only benefit him if we were to medicate for it. Unfortunately, it looks like we may just have to.

As I am sure you have heard, ADHD shares many of the same overlapping indicators as SPD, which makes distiguishing between ADHD and SPD challenging, but not impossible. 

Dr. Roya Ostovar, in her book The Ultimate Guide to Sensory Processing Disorder says, "The area of motor functioning may be helpful in making the distinction between SPD and ADHD.  Most children with SPD have clinically significant weakness in motor coordination, balance, and movement.  The opposite is true for most children with ADHD."

Ironically, Gabriel has always had a good motor coordination, balance and movement.  Gabriel learned to ice skate, in full hockey gear, in less than an hour at age 5.  He learned to ride a two wheeler on time, and can literally climb barefoot up the light pole in our front yard unassisted (much to the neighbor's chagrin).

However, he has a number of other challenges that are impairing his daily living.  Gabriel struggles to find something to do. Not just choose an activity that is of interest to him, but spend more than 30 seconds deciding whether or not it is worth pursuing. And then actually doing it.

Let’s be honest here – he struggles to do things that he likes, not just things that his teachers or I want him to do.

That is challenging.

Add to that he can’t stay on task for more than maybe 3-5 minutes without flat out losing interest and you have a child that literally wanders around our home for hours while we have this conversation:

“Gabriel, I need you to find something to do.”

“I don’t know what to do.”

“OK, check the list of ‘activity ideas’ inside the pantry door.”

“I don’t want to do any of those things.”

(Please imagine at this point that Gabriel is crying, and whining, and most likely throwing himself on the floor, with even perhaps the quintessential fit throwing body language of kicking his feet and pounding his fists – then please remember he is 9. NINE.)

Sensational Links

Sensational Links for 8/27/10

She Hates What I Do - Thanks Pal by SPD college student Maggie at Runaway Maggie May:  A great post about her friend's comment that perhaps Maggie was using her ADHD as an "excuse" to make school easier for her. 

The Things We Do For Our Kids by SPD mom Michelle at She's Always Write:  The arrival of the first non-family birthday party invitation -- and the party is at Chuck E. Cheese. 

Two Big Boys by SPD mom Kirsten at No We're Not There Yet:  Reaching the milestone of the last child officially potty trained!

Rollercoaster by SPD mom Jaimee at Our Life With SPD:  A recount of her six year old's meltdowns and challenges during the second week back to school.

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?

Sensory Diet for School

Many people ask me what a good sensory diet for school is, and unfortunately, there isn’t a simple answer. But, in light of how many people are interested, I am going to breakdown what we do/have done for Gabriel in an effort to give you a starting point in determining the best fit for your own child.

PLEASE remember that I am offering mom to mom advice, which is in no way shape or form medical advice, and of course, should not be substituted for your own good judgment. Now that you have my disclaimer, here we go.

Day begins (Gabriel awakes low):

Eat breakfast with input. Offer breakfast items that provide input, like crunchy granola, yogurt through a straw or chewy dried fruit. We focus on high protein and low sugar. Use weighted lap pad or allow standing (or any other at-the-table option) to make sure he finishes his entire breakfast.

Get ready for school. Dressed, teeth brushed, things packed, lunch ready, etc. This is all good linear movement for Gabriel, so I have included him in doing these things since he was very young. The goal here is to get his body moving and his blood pumping.

Heavy work (10-20 minutes before school). To get him the proprioceptive input he needs, I usually have him do chores (I am big on that more since he is older).  Carrying, moving and lifting chores like reshelving books, carrying laundry upstairs, pushing the dining room chairs in, carrying the trash, are all good options. Younger kids might require more 'fun' like a quick game of Simon Say, short obstacle course with pull ups, stretching/yoga/dancing, pulling/pushing with a door frame, carrying a loaded backpack around, or jumping on the trampoline.

NOTE: We do NOT watch TV in the morning before school. Gabriel gets too low, and even with his heavy blanket for proprioception, it is just a bad idea. I highly recommend against TV watching first thing in the morning. Just a personal opinion.

Bus ride to school. This is where individualized seating arrangements are helpful. Gabriel could very well be over-stimulated by the bus ride (too much noise), so we have him sit up front by the bus driver, and allow him a designated seat (eliminating the potential argument over 'his' seat). He is also first off, is always ‘line leader’ when he gets off the bus. Alternatives would be to wear headphones or MP3 player with quiet music to help control noise during the ride.

Sensational Links

It's Friday, and I have rounded up some more Sensational Links!  Check them out --

Sensational Links for 8/20/10

I'm Overwhelmed! by SPD mom, Momma C at Our Out of Sync Life:  Great tips on how to do it all -- from house cleaning to school work, all with clean clothes and food on the table.

At Home Proprioception Tools by SPD mom (x2) Chynna Laird at The Gift Blog:  A great post about getting your children the input they need, with tips on real life ways to accomplish it.

Welcome to Normal by SPD mom Jen at State of Mind:  A heartwarming post about how great her daughter Jacq is doing.  Nothing better than a success story! : )

Let's Do The Twist by SPD mom Beth at In the Midst of Miracles:  A post about her daughter's need to twist her hair, and a request to help her find a solution.  Do you have any tips?

Help Parents of Kids with SPD Raise Awareness by SPD mom Terri Mauro at SpecialChildren.about.com: A big thank you to Terri for blogging about my 30 SPD Stories in 30 Days, and also about SPDBN member Debbie's 30/30 Celebration! 

If you have a Sensational Link that you want me to see, please email it to me. 

Enjoy your weekend,
H

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.

Music Lessons

Do your kids love music?

Mine sure do.

It was probably 4 years ago now, and I was driving out of our subdivision with all three boys in the van – Gabe was in Kindergarten, which makes Nick 2 1/2 at the time and Matt around 6 months. From out of the back I hear the boys talking about playing musical instruments.

“Mom,” Nick starts, “Can I have a drum set?"

I grin, “Maybe someday.”

“Can I have a Tuba?” Gabe interjects.

“No.” I laugh out loud at the image of my son, much smaller than a Tuba, attempting to play it.

But, that planted the musical seed for all of us.

Flash forward four years, and I am contemplating putting Nick and Gabe in Piano lessons. Why Piano? Because it seems that might be the most convenient to actually attend. And, Nick tried Drum lessons at three different locations, but he was just too young at the time. Not to mention, I don’t want a drum set in the house, but could live with a keyboard. I bet you’re shocked that I am not interested in a drum set, huh?

My husband is very musical – or at least what he might lack in ability is greatly made up for by enthusiasm. Although he isn’t belting out original songs, he enjoys playing the guitar (he began teaching himself about two years ago and he has gotten pretty good), and played the drums for 10 years during his school days. It is fair to say that Jeff is a music lover. And it is guaranteed that if my husband is home, there is music playing.

I, on the other hand, am against any added sound in the house during the day, so the enjoyment of music tends to be mostly had on weekends, and mostly in the backyard.  Which is kind of a bummer.

It Will Get Better

Before I ever got a diagnosis of any sort for my son Gabriel, I think everyone I knew had told me some version of the line, “It will get better”. I knew they all meant well, but I wasn’t dealing with your run-of-the-mill toddler tantrums with Gabe. Not even close. My son had meltdowns. Big, long, scary and excruciatingly loud, meltdowns. Gabe would cry for hours on end, for no apparent reason and crashed into walls for fun; this wasn’t typical development in my book, and I couldn’t understand why people were so quick to dismiss it with any of the old standbys (“He’s just a boy” or “He’ll grow out of it” or the non-committal, “It will get better”). How could people think that it would just get better? I wanted to believe them, I really wanted to, but I had lived with the ‘out of sync’ behavior for years, with no sign of it letting up, so I wasn’t convinced that my son would just magically ‘get better’ one day.

When Gabriel’s diagnosis came in at age 4 as Sensory Processing Disorder, I was so relieved that I finally knew what was going on, that I steamed forward – full speed – through OT and implementing a sensory diet at home and school without so much as taking a breath. If that was what my son needed then that was what I would do for him. After all, this is what would finally make things ‘get better’, right?

But you know what? It wasn’t easy and it didn’t just ‘get better’ as quickly as I was hoping. I was tired of being told by family, friends and therapists that things would ‘get better’. Did these people really understand what I went through every single day? Did they understand how upset my son was over the smallest things? How hard school was for him? How hard having play dates was? How difficult it appeared for him to enjoy the simplest pleasures of being a child? If things were really going to get better, could they PLEASE hurry?

Sensational Links

My new "Sensational Links" post series is inspired by the blog No Hands But Ours, where they list the best articles the special needs adoption blogosphere has to offer each week.  What a genius idea.  So, logically, I am copying it.

Each week, hopefully, I am going to collect the best from the SPD Blogging Community and leave it here for you to check out.  Cool, huh?  If I don't follow your blog, but you think you have something that would be perfect for this, please feel free to email me the link.

Enjoy!

Sensational Links for 8/13/10
(odd that we are staring on Friday the 13th...)

Second Fiddle, from SPD mom Caitlin Wray at Welcome to Normal:  A great post about how her high needs child (Me First) always takes priority over her toddler (Me Too), with tips to help you focus on your Me Too kids.

Car Wash, from SPD mom Martianne Stranger at Training Happy Hearts:  How to turn washing your car into a multi-sensory activity for the whole family.

Now There are Two, from SPD mom (x2) Chynna Laird at The Gift Blog: Getting the SPD diagnosis for her second child.

Road Tripping Adventures, from SPD mom Patty O. at Pancakes Gone Awry:   Her hysterical account of her family's regular 3 hour road trip to thearpy - including a horrifically long tram ride.

These Dreams, from SPD mom Alysia Butler at Defying Gravity: When her dream shows her how hard life could be, she is reminded to stay in the moment with her son.

Sensory Seekers and Sensory Avoiders

I had such a huge response to my post, “What is Sensory Processing Disorder?” that I wanted to talk a little bit more about how it presents itself.

I want to start by talking about Sensory Modulation Disorder – or in basic terms: Sensory Avoiders and Sensory Seekers (for a full definition, click here).

For the purpose of this post, I am going to list sensory seeking and sensory avoidant behaviors, to paint a more accurate picture of what sensory-based behaviors look like. You can consider these 'symptoms' or a 'checklist' but my real goal in posting them is to help parents and caregivers recognize the sensory challenges in the children in their life.  In addition to that, I hope to paint a bigger picture of specifically of the kinds of behaviors Sensory Seekers have, as they seem to be the least understood.

Let's start with Sensory Seekers.

Navigating Difficult IEP Meetings Successfully, Interview with author Jeff Cohen

While looking for an expert to speak with about IEP Meetings, I happened upon the book Guns A’Blazing: How Parents of Children on the Autism Spectrum and Schools Can Work Together – Without a Shot Being Fired, by Jeffrey Cohen. I immediately liked the title, because most families I talk with do attend meetings with their ‘guns’ (at least in their holster) – and few are able to actually leave them at home.

So I looked up the author, Jeffrey Cohen, to learn a little more about him, and here’s what his Amazon page said, “Jeffrey Cohen started life as poor street urchin, orphaned and taken in by a gang of pickpockets led by an older man named Fagin. No, wait. That's someone else, entirely.”

And I laughed out loud. Really hard. Which was just refreshing, because you know what, this parenting a special needs kid is HARD – and you all know my motto: If you can’t laugh at my life, you have no sense of humor.

Silent Prayer for School

With school around the corner (finally) I realize that the impending stress of IEPs, transitions and new teacher worries have begun to weigh heavily on my mind, and the minds of every special needs parent I know.  So to honor the new road ahead, I am reposting my school prayer.

Silent Prayer for School

Please let this year be successful.
Give me the strength to get through the IEP process.
Let my child qualify for everything he needs.
Let the school be on our side.
Let us work as a team.

What is Sensory Processing Disorder?

Recently I have seen a rise in the number of articles, Facebook posts, and even tweets claiming to define what Sensory Processing Disorder is. This should be good news, and it is -- mostly.  But, some of them are full of misinformation.

Although I am thankful that anyone wants to help spread awareness, it frustrates me personally that these people could very well be doing more harm than good. I have dedicated such a large portion of my life to spreading awareness that will hopefully benefit kids like mine all over our country and arguably the world, that I would really like to see people get good, solid and accurate information. Wouldn’t you?

It is with that goal in mind – the goal to educate and help – that I am taking my personal stab at answering the increasingly popular question, “What is Sensory Processing Disorder?”  My answer, and this article, will be specifically geared towards helping parents with SPD kids prepare a response for the dozens of strangers (and even family members) who might stare or judge us every day.  We are on the front lines of this disorder, and I believe have the highest stake in making sure that the message being sent about Sensory Processing Disorder is complete and accurate.

Back to School Giveaway from Soft Clothing and HLW3B

Back to school is in full force around here -- it isn't hard to miss:  the stores have officially begun to remove the pool toys and BBQ tools and replace them with binders and crayons.  This is the time of year that my boys begin the 6 week long whine for a new back pack -- and pencils, and crayons, and paints, and...you get the idea.

This is also the time of year that I start to cringe with the thought of buying all of their school supplies, new backpacks (because we chew ours up each year, of course) on top of new shoes and new clothes -- who can afford that?  Especially for 3 kids?

Now add to that I have to buy new fidgets and other sensory diet tools for the classroom (yes, I know that the school will supply these, but my kid can't wait that long), and as you might imagine, back to school costs big money at my house.

So, when I heard from Jessica Ralli at Soft Clothing that she wanted to include my book in her Back To School Giveaway, I of course was flattered. But when I saw what she wanted to giveaway, I had to get in on it.

So, with that, I am crazy excited to announce the Back To School Giveaway by Soft Clothing, co-sponsored by none other than Hartley's Life With 3 Boys!  I know, aren't you thrilled?!

"Tell them what they can win, Bob..."

Soft Clothing is giving away ALL of this to one lucky person!  That's right, your child's back to school will be smooth sailing -- and you won't have to break the bank either.

Here it is:

3 pack of Soft Sensory Tees in color/size of your choice
6 pairs of Soft Seamless Socks
"This is Gabriel Making Sense of School" by Hartley Steiner
Lands End Uniform Backpack
Classpack of Crayola Colored Pencils
Tactile Fidget
Desk Buddy Sensory Bar
6-Pack of Mead Spiral Wide Ruled Notebooks
4-BG Flash Drive
12-Pack of Crayola Washable Fine-Tip Markers
Peltor Junior Noise Protector Headphones
Classic Pencil Grip Pencil Sharpener
4-Pack of Sharpie Highlighter Pens
3-Pack of Pink Paper-Mate Rubber Erasers
2 Mead Classic Composition Books
Plastic Hinged School Tool Box
Max's Mud-Natural Sculpting Dough
Pocket Stixx Oral Motor Tubes

Are you excited?  There are six very easy ways to enter -- and you can enter through each method increasing your chances of winning this GREAT giveaway. 

Click here to view the official entry form and get started.

A big thank you to Soft Clothing for their continued dedication to the SPD/ASD community and for continually surprising me with awesome and fun ideas.  You ROCK Soft!

Are you still reading this?  Stop -- and enter NOW.
H

FTF: Emotional Acceptance by Cat Lichtenbelt

Here is August's First Things First article, which was written by Cat Lichtenbelt who writes at http://www.sensoryflow.com/.  Like all of our articles, I hope it provides you inspiration to take care of your own needs!

For more information about First Things First click here. There is also a list of the previous First Things First articles under the "Interviews, Guest Posts & FTF" tab at the top -- with the obvious title of "First Things First Articles".

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I see acceptance as coming to an agreement. It is like going to a meeting of the minds and everyone walking out on the same page with the same purpose and goals for the future. As much as I’d like to say I am there, I am not, at least not yet. I have had some meetings, but I have never walked out with the same purpose, I merely walked out glad to have the meeting over with. Many of these meeting took place in my head and only Me, Myself and I attended, and we still did not agree!

To get to acceptance, you must first encounter other emotions, or stages. I’m not sure I ever truly went through shock and denial or any of the other well known stages of grief. I think I went through my own SPD, Sensory Parenting Discovery stages.

My first stage was the Maybe stage. “ Maybe my child is a bit different”, “maybe he is more active”, “maybe this school is not working for him”, “maybe with some therapy he can fit in”, “maybe if we just understood him more”. “Maybe I’m crazy”, or even better, “maybe they (the school system) are crazy and too institutionalized”. This stage also included, “maybe he has a disorder” and he was then diagnosed with one, Sensory Processing Disorder. Maybe is a good stage, it is a stage of questioning yourself and your child’s needs, and the priority of those needs.