SPD Blog Carnival

Since starting the SPD Blogger Network last month, I am happy to report we have 19 members and counting! 

These bloggers are providing the SPD community something very special:  Personal connection and emotional support -- not to mention resources sharing and practical solutions to living with a SPD kiddo!  Reading about someone else's journey gives us all those "That is just like my life!" moments and allows us to feel less isolated, and more connected to those around us.

To honor the start of the SPD Blogger Network, which began on April 30th, 2010, I am going to begin a SPD Blog Carnival at the end of each month.

If you don't know what a Blog Carnival is, click here to read the definition.

I would love to have all of you join!  This is an amazing way to take the best of the best from the SPD Blogging Community every month, and publish it in one location -- kind of like having a monthly 'magazine' that people can come to and read.  Everyone of you that reads this (even you lurkers!) can participate -- you DO NOT have to be part of the SPD Blogger Network to participate in the carnival.  (But, if you blog about SPD, please consider joining because we would love to have you!)

This month's theme is Sensory Processing Disorder.  Anything you have posted, in the last month, whether that be tips, an interview, a rant, or an emotional triumph -- whatever it is that you would like to share about SPD please leave your link below.  The permanent link to this post, and all monthly Carnivals will be kept under the "SPD Blog Carnivals" tab at the top.

I also encourage you to check out the other links -- explore other blogs and learn more about what the SPD journey is like for families all over the world!

If you have any questions, feel free to email me.

Now link up!
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We are Just Human

During a lame attempt to explain my way out of being called a 'great parent' the other day (because trust me, as my dear friend Carrie Fannin says, my Mom of the Year certificate must have gotten lost in the mail – because it still hasn't shown up), a term I have great trouble with, because it suggests that I don't make any mistakes and must do things ‘right’ all the time, I got to thinking about why we as special needs parents seem to always feel like we are the worst parents ever -- when we should really spend our times patting ourselves on the back for how great we're doing.  But I am in the same boat -- I have the "I'm the worst mom in the world" feeling more often than I'd like to.

Why?  Because I have as many bad parenting moments, if not a lot more, than any other parent out there. And it seems that as the parent of a high needs child the pressure to do everything 'right' and 'now' is greater -- how you should be rushing to each new therapy, or try each new 'magic pill' before it's too late -- so when we do have a bad moment, we are harder on ourselves.  Aren't we?  You know what I mean, right?  Some days, I make mistakes.  I start yelling or say something that in retrospect has me feeling awful and guilty like the “Worst Mom” award is going to arrive on my doorstep via courier by 8am.

I've had a lot of them lately too.

The hard thing to explain to most people, let alone accept it as part of being the parent of a high needs child, is that we are just human. We give super-human effort and appear to have super-human strength when facing our children’s obstacles, but at the end of the day, when we take our capes off, there we are: Just human.

Interview with Erik Linthorst, Autistic Like: Graham's Story Giveaway

Were you ever confused as to what was going on with your child?  Did you ever feel like your concerns weren’t being heard?  Did you spend hours searching for the right therapy that would help you reach your child?

Then you and my guest Erik Linthorst have something in common.

Erik Linthorst has a number of titles, but I think his most commonly use one is “Graham’s Dad”.

Erik is an award winning film maker who documented his family’s journey in the film Autistic Like: Graham’s Story. Erik captured the ups and downs that we all experience when starting our special needs journey. You get to see firsthand not only his son Graham, but Erik and his wife Jennie through every therapy, meltdown, tear and triumph that comes their way.

I had the honor of watching his film with him last October at the Sensory Showtime event here in WA, which was one of more than a hundred worldwide, all sponsored by the SPD Foundation. With my boys just down the street at my mom’s house, and my husband running the audio/video for the event (yes, geek husbands rule!), I sat with nearly 100 other people mezmorized at the engaging and often emotional story of Erik and Jennie’s journey to find help for their son Graham.

The story will strike a chord with all of the SPD parents out there who have advocated for their child. Erik and Jennie are dedicated advocates for their son on a path that many of us have taken. But with his film, Erik has brought new attention and much needed support for those on the SPD journey (which can be a struggle to say the least!), and for that, I am eternally grateful.

Erik has graciously offered to talk with me here today and to give a copy of his amazing film to one lucky HLW3B reader. Hopefully his story will give you a sense of connection to the greater story of all our children – a story that Erik is working to tell all over the world.

Now grab some popcorn and a box of Junior Mints, the show’s about to start!

More Than Just TV

Matthew has been really off lately -- I have some ideas why, but they don't really matter.  What matters most is getting him back in the swing of things (routine!) and keeping him from winding up too far.  One of the ways I am doing this, is remembering to take quiet time. Reading, trains, and TV are all good ways to stop moving and regroup. 

I wrote this last summer, and I have gone back to read it again myself, in order to keep fresh ideas for Matt and I, and to turn our TV watching into something useful for him.  So, I am posting it again today, because it is a good reminder to all of us that our little ones often need as much down time as busy time.  Maybe TV can double as a little light therapy too?! 

Here ya go!  Please feel free to add your fave TV shows (and why) at the bottom of this post.

Assuming you are all not TV Nazis, and have learned the value of some "quiet time" with a heavy blanket (or not) in front of the boobtube for your kiddos, these are some of my favorites. Grab your Tivo remote we are in for a bumpy summer ride and you'll need backup:

Special Agent OSO (Playhouse Disney): I know you are thinking "no way", but hear me out. This relatively new show stars Sean Astin, from the Lord Of The Rings movie series, as a sun bear (I think) with a James Bond flair. He goes around with "special assignments" solving problems for regular kids all around the globe. Why is it on my list? Executive Skills and Motor Planning. Yep, that is the theme of every mission: Find the problem, break it down with steps and accomplish your goal. From cleaning a child's room to making a salad to learning hop scotch this little Double-O-Bear is teaching something much more valuable than the ABCs.

School and Summer Planning

As this school year is ending for all three of my kids, it means I have to do a lot of planning on my part – planning for next year, planning for summer – and as it turns out, I don’t have a crystal ball, so it is proving to be a little challenging. Just a little.  But, I do have a plan.  Don't you always have a plan?  That is SO part of being the mom, huh?

Since I have all of this on my mind, what I am doing, what I am planning, I thought I would share with you all -- because I have a suspicion that you are doing the same thing!  Let me break it down for you:

Matthew (Preschool)

Matthew finishes his first year of developmental preschool (technically half a year since he started in December), and any fears I had last fall about him progressing past his IEP and being kicked out of Developmental Preschool have been squished. Matt is not neurotypical. He is definitely marching to the beat of his own drum, and I suspect more and more that he has Aspergers, which I may look into having diagnosed this summer.

Homemade Sensory Diet for Summer

I love to find new blogs out there that have great new ideas, but what I love even more, is a GOOD idea for Sensory Processing Disorder -- so imagine my thrill when I stumbled upon Training Happy Hearts with an entire post dedicated to Sensory Diet activites that were frugal, homemade, and just plain fun!  It is not an exaggeration to say I was giddy.  I just had to get to know the blog author -- and convince her to share her ideas with my readers.

Lucky for me, she was willing to share her most awesome, reusable, creative, and summer-adventure inspired ideas with us!  Meet Martianne Stranger, full time mom and learner, part time teacher, tutor and blogger at Training Happy Hearts.

This isn't your momma's old Sensory Diet -- this is fresh and new -- and will change your perspective from 'I have to get some Sensory Diet in' to 'What sensory fun can we have today?"

Get ready to hit print on your computer -- and please share it on your Facebook -- these are great ideas.

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Sensory Fun in the Sun (or Shade)

Summer is coming. Time to grab your shades – your SPD lenses that is! And, looking through them, solve this simple equation:

Summer + SPD = ???

Did you say “extra challenges”?

How about “opportunities”?

I say, “Both!” For as any SPD parent or educator understands, the change of seasons can present some extra challenges. Yet, many also recognize it offers chances for Sensory Fun in the Sun! Out on the trails, at the beach or on the playground, with just a few homemade and re-purposed materials –plus looking at life through SPD lenses – summertime can be enjoyed in the sun or made in the shade. Here are a few ideas to get you started:

When Life Gives You Lemons

Make lemonade (or sangria).  Duh!  : ) 

Matthew reminded me of that yesterday.  With that spur-of-the-moment-mess-making-style of his.

I was in the process of getting everything ready to leave for the grocery store (me, Matt, list), I was also trying to sneak in taking the photos off of my camera, and putting them on the photo-server before I left (this sounds simple, but I take way too many photos, so the sorting and organizing part takes more time than I’d like to admit).  Then, during my multi-tasking I heard Matt moving a chair around in the kitchen and the plan changed.

Clicking as fast as I could, I began to mentally go through what was in the sink that had struck his interest so strongly – I had just started the Sangria marinating in the fridge (recipe at the bottom of this post!), so I was fearful that he was after the knife in the sink. That would be unusual for him, but hey, we’re talking about Matt here, so you just never know.

“Matt? What are you doing in there?” I yell from the office, still madly clicking away at my photos.

No answer.

200th Follower Guest Post

Just a little under two weeks ago, I realized I was at 199 followers -- and was more than a little excited to see who the 200th follower would be.  I truly believe, for the record, that I have the most amazing followers, many of whom I am lucky enough to have grown to be friends with, so the introduction of a new potential 'friend' was very exciting for me.

Anyway, I decided it would be cool to have the 200th follower write a guest post, you know, kind of a 'get to know you' type post that shows us what SPD (or special needs of any kind) looks like for that person -- and gives all of us a better look at how wide spread sensory issues are. 

So, are you curious who the 200th follower was?

It was Nancy Brown who blogs at Prematurity With Love about her adorable son, Tyler (pictured above, and really, how cute is that kid!). Tyler was a preemie, has sensory issues, Cerebral Palsy as well as other challenges, but that doesn't stop him!  Nancy is a dedicated mom and has worked, like all of us, to understand and accommodate her child's needs.

Sensory Detective

During my book signing a few weeks ago, I was asked by a mom how you can tell the difference between sensory problems and behavior problems.  It made me smile.  Why?  Because in my experience, this is hands down the number one parenting concern for those raising a child with Sensory Processing Disorder.  It always has been and I suspect it always will be.   

And since getting a diagnosis of SPD is becoming more common at an earlier age – (you can’t say enough things about the value of early intervention, can you?) -- we as parents have an even harder time telling the two a part.

A 2 year old with sensory issues is a tantrum throwing machine. Been there. Done that.  And it sure doesn't end at 2, does it?!  Some days I feel like my nearly-nine year old isn't any better!

So, I figured I would give my take on this -- but please remember, this is my non-doctor, non-therapist, non-medical professional of any kind, advice, and in no way shape or form should you consider it medical advice or substitute it for your own good judgement.  Deal?

In a nutshell, my advice is the same advice that Dr. Ostovar gave in her interview last month, “Be a detective, and try and determine what caused the reaction.”  But, I am going to give you some specific examples that will hopefully help pave the way for your own clue-finding.

And with a wave of my magic wand:  You are a sensory detective.

Tribute to My Grandmother

In honor of Mother's Day, I am going to post this tribute I wrote many years ago about my grandmother, my mother's mother, a woman who died when my mother was 11, but who's spirit lives on inside her and me -- and if I am really lucky, my children too.

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Ellinwood Kansas was the heart of the heartland. You could stand on my grandmother’s porch and see miles of wheat fields rolling over gently sloping hills. Ellinwood is as small as it gets; no one locks their doors, they leave their keys in their cars and you will see children playing outside long after dark. When I visited Ellinwood in the summers of my childhood, I was in awe of their Harvest Festival and amazed by the number of people who stopped me in the street to ask me if I was a “Herter”. Generations of my family grew up in that small town, and still live there today, but it was the one woman from Ellinwood that I never met who's memory inspires my advocacy even today.

6 Word Tribute to My Mom

"Always there when I need her."

I came across this amazing idea from One.org -- write a 6 word story about your mom, an idea that is credited to Ernest Hemingway.  It is said that when asked to write a short story, he replied "Baby Shoes.  For Sale.  Never Worn."  When I read that, my heart stung.  It really is possible to move someone with 6 words.

Interview with Carrie Fannin, Founder of SensoryPlanet.com

I thrilled to welcome my good friend Carrie Fannin to HLW3B today! Carrie is the founder of Sensory Planet, an international online social networking site dedicated to Sensory Processing Disorder boasting over 1100+ members, which celebrates its first anniversary this month. Carrie also heads the SPD Foundation’s Parent Connections Group here in my home state of WA, which she has been doing for nearly 10 years!

She is a woman who wears many hats, all of which are dedicated to supporting families with SPD -- and because of that passion she is giving away an upgraded membership to Sensory Planet to one lucky HLW3B reader – that’s a $60 value!

And with that, grab a pen and pad, and start taking notes, Carrie’s here to give us her mom-tested and time-proven tips for parenting a sensational kid.

What Gets Your Goat?

I think what people fail to understand about being the parent to a special needs child is that it isn’t the ‘child’ that has us exhausted, stressed or just plain worn out, it is scheduling therapy appointments, managing medicine, educating school districts, advocating for extracurricular activities and yes, even running to the pharmacy 4 times a month for medication that puts us over the edge. It would put anyone over the edge.

For some kids, medicine is a fact of life. For Gabriel, since he is Bipolar, it is a requirement of his stability. That means, that it is my job as his mom to make sure he has his meds on time every day.

Now, the part of this that has me worked up today, is that the fact that medicines mean dealing with the pharmacy. And although the people at our pharmacy are nice enough, the whole experience drives me to the edge quicker than virtually any other thing in my life.

Let’s start with the fact that I have to go multiple times a month. Why? Because it isn’t like any of Gabriel’s medicines actually get finished at the same time each month – mostly because they are started at different times, and then changed, or upped or downed, or adjusted in some other crazy fashion to make picking them all up at the same time impossible.

FTF "All Showers Lead to Australia" by Hartley Steiner

Here is May's First Things First article, which was written by me. : )  For more information about First Things First click here.  There is also a list of the previous First Things First articles under the "Favorite Posts Tab" at the top -- with the obvious title of "First Things First Articles". 

As always, please leave your comments below!

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“Do you want to go to Australia with me?” My husband asked casually while I stood at the stove cooking the taco meat for dinner the other night. Such a ridiculous question didn’t warrant an actual verbal response, so I just looked at him out of the corner of my eye and gave a sarcastic smirk. He smiled, and said, “I am being serious. If you and I both start working on it now, we could find someone to take care of the kids for a few days and you could come with me to Australia in June.” He really was serious. And you know what, I wanted to go.

It isn’t going to surprise anyone to find out that spending a week away from our kids is something that we have NEVER done – heck we haven’t even made it 48 hours away from our kids in the last seven years. SEVEN YEARS.

Normally when I get asked by friends or relatives about traveling for an extended period of time, I always say my dream is to ‘be away from my kids long enough to miss them.” And it is true. The kind of stress I am under every single day as a special needs parent is not the kind that dissolves with a 20 minute shower. Not even close. And I spent years using that excuse to justify not spending any time taking care of myself.

But that changed about a year ago.