What is iLs? Interview with Dr. Ronald Minson

As many of you know, I am starting Integrated Listening Systems (iLs) program with Matthew. When I posted about it over the holiday break on my Facebook page, it stirred up a great deal of questions, curiosity and of course, confusion.

Although I was inspired by Dr. Minson’s presentation at the SPD Symposium, and had the pleasure of speaking with iLS CEO Randall Redfield as well, I am by no means an expert on this system. Like mostt parents with children on the Spectrum, I know exactly what Matthew struggles with, but when it comes to being able to break down all of the “therapy” options out there, some of the details get lost in translation.

I do know what Matthew needs help with. He needs help managing self-regulation, controlling his movement through space (stop crashing, tripping, falling, clumsiness, core strengthening, all will help him stay seated at circle time), writing (spatial awareness on the page), and voice intonation (helping him use correct inflection when speaking – less ‘monotone’ and ‘scripted’). These are my biggest concerns for starting Kindergarten, and my greatest motivation to begin this program now – before summer.  (Update on Matthew's progress at the end of the interview!)

And those challenges are exactly what iLs has the possibility of helping. So, for those of you who have an amazingly gifted and awesome kiddo like Matthew, who just happens to be on the spectrum or have sensory issues, and might benefit from some help in those areas (and others), I wanted to interview Dr. Ronald Minson. And imagine how incredibly honored I was to have him say yes! Woo Hoo!

The Power of Storytelling

Dear Readers,

Last April, I came up with the idea of having a blogroll dedicated to those blogging about Sensory Processing Disorder.  I put the word out.

And at first it was just Chynna, Caitlin and myself.

Within days that grew. And grew.  And GREW.

By December 2010 it had nearly 60 members. 

Parents of kids with sensory issues, all dedicated to writing about their experiences in an effort to reach out and support other families just like theirs.

They were committed to spreading awareness of Sensory Processing Disorder as far as their words could reach.

I believe that stories are powerful. One of the most ancient, time trusted, ways to share information, tell about resources and to relay our history.

Because of this, I thought, what could be more powerful than all of these stories in once place?

And the SPDBN was born.

This is your personal invitation - from me to you - to please join me at home of the new SPD Blogger Network, http://www.spdbloggernetwork.com/. 

New daily posts begin on February 1, 2011, from over 70 contributors already registered to contribute from all over the world.  Humor, insight, inspiration and advice from parents who have been there - done that.  Also, reviews, giveaways and interviews from professionals in the field of Sensory Processing.  You don't want to miss this!

Show your support by contributing (very easy!) and by following along.  You can follow via RSS or email, and connect on Twitter and Facebook. 

Also check out the newsletter, which will boast a recap of the month's most popular posts, as well as a "SPD Blogger of the Month" interview and much more.

The more people who join - the more stories we tell - the further that awareness travels. 

Please share the new SPDBN with your followers, 'fans', friends and family.  Blog about it.  Post about it.  Tweet about it.  Spread the word!

The SPD Blogger Network
Sensational Chaos.  Sensational Joys.  Sensational Lives.

What story will you tell?

Hartley

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.

Comparison is Dangerous

I went to Costco the other day. This in and of itself is not at all that notable, except perhaps that I went without the kids on a weekend, which is definitely out of the ordinary.

Costco was crowded, which it always is on a Saturday, and I was rushing through as quickly as possible because I had to go through twice (yes, I require two baskets to buy everything).

On my trip through the meat department, I noticed a man with his daughter. She was maybe 7 or 8 years old, with brown hair down to her shoulders and darling round face. She was also in a wheelchair.

I immediately felt akin to this man. A man who knows what it feels like to be a special needs parent. Knows the challenges, the doctors’ appointments, perhaps the therapy appointments and of course the emotional journey we have all been on – I knew this man understood.

I wanted to say ‘hi’ to him. To give him a knowing glance. To somehow say, “I see you. And you’re doing a good job.”

But it struck me hard that he may not understand – or relate – to my journey with special needs.

Because our journeys look different on the outside.  For me, when I go to Costco, often times Matthew is yelling from his seat in the over-sized basket that he can’t sit there because it hurts his penis (yes this actually happens), and then flees from me the moment I turn him loose – sending me into a walk-run through Costco after abandoning my cart, purse and all, because I fear he will head straight to the emergency exit door (which has happened in more than one location).

And the Winners Are... First Annual SPD Blogger Awards

After a staggering 600 votes, we officially have winners!

Best announcer voice (eh, hem...)...

Eat the Doughnut!

"You haven't lived until you've dissected a doughnut."

Several weeks ago, I posted that as my Facebook status, and got a few puzzled comments.  Most of my friends could not understand what I was talking about.

But you, my fellow parents of children with sensory issues, you understand.  Don't you?

My son is an incredibly picky eater.  In order for him to eat a plain doughnut, we have to remove the "brown" off the outside of it, so just the inside white part is exposed.  This stems from the fact that over a year ago, he gagged on a plain doughnut, and the sensory memory of that has stayed with him ever since.  So for him to be able to eat it, he has to have the outside surgically removed.  Never mind the fact that he's able to eat a plain munchkin no problem.  The memory is from the doughnut, and can't be changed, reasoned with, or explained.

So, you ask, why even bother giving him the doughnut in the first place?  Give him a different kind.  Or none at all.

Because my son isn't just a picky eater.  He's a picky eater with SPD and autism, who also happens to have an intolerance to all corn products.

That's right.  His diet, already limited by his sensory disorder, is that much smaller because he can't digest anything with corn.  That means no corn starch, no corn syrup, no modified food starch, no dextrose, no maltodextrin, and of course, no high fructose corn syrup.

I'll give you a moment to go check your pantry and see how many foods have some corn product in them.  I'll name a few kid-friendly ones:  Cheerios, Rice Krispies, several brands of peanut butter, breads, jellies, crackers, chicken nuggets, hot dogs, bologna, deli meats, yogurts...and we haven't even left the house.  Forget about fast food or eating out most places.

Marriage Advice Moms Don’t Want to Hear

Subtitle: “It Isn’t Your Husband’s Fault”

I hear so many women complain about their husbands and I am totally guilty of this too. But, I am not in your average-run-of-the-mill marriage. My husband and I are raising children with special needs, developmental delays, complex neurological conditions, mental illness and learning disabilities. And that puts a different kind of pressure on our marriage.

This is the kind of pressure people experience that are dealing with chronic illness, unemployment or long term financial issues – only worse. This kind of pressure is centered on helping our children and that means the stress is ever-present for both of us. Which sets the stage for problems.

Often families go into full-speed-ahead mode right after diagnosis. Especially moms. We become consumed with learning everything we can about our child’s challenges: Spending hours researching, going to forums, blogs, support groups, calling doctors, and hundreds (if not thousands) of dollars going to therapists, psychologists, behavior specialists, and even MORE money signing up for social skills classes, and buying therapy equipment so we can turn our home into a therapeutic oasis for our child. We spend everything we have each day pushing the envelope to find ways to help our child. Because we are the MOM and that is what we DO.

But what often happens during the never-to-be-quenched-thirst-for-knowledge-mission is a polarization between husband and wife. You cop an “I know the answers” attitude that quickly leaves your husband to play the role of “guy who doesn’t know the answers”. And about a year or so down the road, you turn around and realize that YOU have done ALL of the work. And you get angry. Frustrated. Annoyed. Pissed off that your husband doesn’t understand your child or appreciate all that you do. Sound familiar?

Yet, as hard as it is to believe, it isn’t your husband’s fault. Not the answer you were hoping for?

And the Nominees Are.... (Voting!)

VOTE NOW

The nominations are in, after reading through all of the incredible comments and visiting each of the blogs, we are ready to start voting.  And, let me say, I don't envy you at all - this is an incredible line up of blogs! 

So, without further adeiu, the nominees are:

Awesome:

Pancakes Gone Awry
Our Life With SPD
Mommy Melee
Welcome to Normal
I Cry, Therefore I am
Stepping on Cheerios
Kid Companions

Inspirational:

Try Defying Gravity
The Gift
Brotherly Love
Comfort in the Midst of Chaos

Humorous:

I’m Just That Way
Stark.Raving.Mad.Mommy
Nobody But Yourself
Our Little Tongginator
She’s Always Write

Resource:

Our Journey Thru Autism
A Bipolar Daughter
Help! SOS for Parents
Eide Neuroloearning Blog
The Motor Story
Creative Learning Fun

Newbie:

The Next Steps
Hello.World.
Homeschooling Nate
Raising Ryan
Raccoon School
The Simile of Autism and Snowflakes
The Trials of Living with SPD

(If your blog is on this list and you have not received an email from me, please email me now.)

Official Voting Rules:

1. You may solicit votes for yourself, but you may not offer giveaways or entries into a giveaway for a vote (no bribing).
2.  You may vote twice each day until voting ends (January 22nd, 2011 at Midnight PST).

VOTE NOW

Let the voting begin!
H

9 Ways to Boost Your Child’s Social Skills

When most parents think of teaching their child good social skills they think of making sure their child learns to say “Please” and “Thank you.” Others may even add in that a child should offer a snack to their friends during play dates or teach them why it is appropriate to give everyone in class a birthday invitation and not to exclude anyone. All of which are great social skills to have. For every child.

But, for parents of children with an invisible disability – whether that is Autism, Non-Verbal Learning Disorder, Sensory Processing Disorder, or even Bipolar Disorder – we think of completely different challenges when we are faced with teaching our children social skills. We think of reciprocal language, sharing control during play, being flexible, and not monopolizing the conversation (that is assuming they even know how to start a conversation in the first place).

Knowing our children have these complex challenges with social skills makes teaching social skills just a part of a much larger problem. And, often our children’s social skill deficits are compounded by other challenges – such as attention issues, sensory issues, or a simple lack of interest. But that doesn’t change the fact that most of our kids want friends.

And they need help from us to make – and keep - friends.

So how do you go about helping boost your child’s social skills? Good question!

In our house we have tried many different ways to teach social skills, from the basic skills (ask someone to play with you), to the more complex (you have to respond to their question and ask another one), and the ones that have no explanation at all (how to fight ‘fair’). And over the years, I have boiled it down to those that work.

Here are 9 tips for boosting your child’s social skills:

12 Ways to be a Better Parent

Being a parent is hard.  Being a special needs parent is really hard.  I find that too many of us think that being a better parent has to do with providing more therapy for our kids, a better school, better doctors or some other tangible thing.  I don't think that is how our kids would define 'good parenting', do you?

Here's my advice on ways you can be a better parent today.  And by 'better' I mean your kids will like you more. : )

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1. Take care of yourself. This is about as basic as it gets – if you are not taking care of your own needs, then you are over-tired, stressed and well, making those around you miserable. Imagine how much easier everything would be if you were well-rested, relaxed and parenting intentionally instead of reactively? Start by taking a shower. Build from there.

2. Listen more. Our kids have lots to say, and we all end up cutting them off because we are much more concerned about our own agenda and what needs to be happening. Take the time to truly listen to your child’s concerns. He’s trying to tell you something.

3. Plan to Connect. Instead of just planning therapy sessions, or play dates, or errand running, plan a time to just be. Time to spend with you and your child (if you have more than one, do this for each of them) and learn about each other. If you don’t, you’ll turn around and have a teenager on your hands in no time.

4. Play. This is one that is often forgotten. Play with your kids! This does not mean supervise them playing, it means that you have to actually, really, truly, play WITH your child. Let them lead, sit on the floor, make funny voices, and interact in the games that mean the most to your child.

The First Annual SPD Blogger Awards! *Nominations*

That's right - music has the Grammy's and movies have the Oscars - and us SPD writers now have...

The SPD Blogger Awards!!

I am giving out awards for blogs and bloggers who's selfless chronicling of their day to day chaos raising a child with Sensory Processing Disorder inspires, educates and just flat out makes us laugh - and you could win!

Here's how it will go down:

January 10 - 16, Nominations
January 17 - 23, Voting
January 25, WINNERS ANNOUNCED!

Are you hooked to a great blog about SPD?  Have you found a blog that gives good advice, makes you laugh, inspires you to keep going?  Nominate them!

Nomination Categories:

Awesome Parent Blog: This all around AWESOME blog must be written by the parent/caregiver of a child with SPD.

Inspirational Parent Blog:  This INSPIRATIONAL blog must be written by the parent/caregiver of a child with SPD.

Humorous Parent Blog:  This HYSTERICAL blog must be written by the parent/caregiver of a child with SPD.

New Blog:  This brand new blog (less than 1 year old) must be written by the parent/caregiver of a child with SPD.

Resource Blog:  This blog can be written by a professional, therapist or parent, individual or group, aimed at giving advice or guidance to parents raising kids with SPD.

It is simple to nominate a blog/blogger, just fill out the form located here, and we are in business.  You can nominate yourself, or someone else, and you can nominate as many blogs as you want!  Please fill out the form for EACH blog you are nominating (one blog per form). 

Once we have all of the nominations in, I will post a voting form here on HLW3B that will be open for YOU to VOTE the week of January 17th - 23rd.  Once the voting is over, and tallied, I will announce the winners here on the 25th of January. 

Please show your favorite SPD blogger some love and nominate him/her!  This is a great way to THANK them for sharing their story and inspiring others!  Now click and get typing!

NOMINATION FORM HERE

Finding the "Just Right Challenge" by Patty

Over the years, my family has missed out on many typical childhood activities. We have never gone to an amusement park, we often decline birthday party invitations, and we rarely travel. We also often skip church parties, forgo YMCA breakfasts with Santa, and choose not to enroll our kids in many activities.

Sometimes I wonder if we should get out more. I wonder if maybe I am sheltering my kids too much or if I am not making enough effort to get out.

The reason we skip most activities is because of the sensory craziness that comes with them, and I am never sure how Danny and Charlotte will handle it. Sometimes, too, it just doesn’t seem worth all the trouble to prepare the kids and ourselves for the possible ordeal.

And, if I am being perfectly honest, sometimes I can be a bit anti-social. While I enjoy being around other people, I don't particularly care for large groups; the sensory stimulation isn't just hard on my kids, but on me as well.

We aren’t hermits; we do take the kids to social gatherings. It’s just that we are pretty choosy. Still, I have to admit, we refuse many, many invitations.

This past summer, I met a woman, Alicia Hart, an autism advocate who founded an Adventure Club in our town. This was a group for families of kids with autism who regularly met at the park to engage in science experiments, art projects and musical performances. Danny and Charlotte loved it, as did I.

To end the summer on a high note, Alicia gathered almost 100 people—kids with autism and their families—for a bowling party.

Having a Special Needs Babysitter

I was recently asked on my Facebook page if I had any tips for babysitters. I think that it is common for special needs parents, especially those with young kiddos, to have never had a babysitter. Now, I don’t mean that these parents have never left their kids, but rather that they leave their kids with family members, or their spouse.

So, what do you do when you leave your child with a REAL babysitter for the first time? Here are my tips, really with the goal and aim that your child and your family establish a positive long-lasting relationship with a babysitter, that allows you the flexibility of being out of the house, and your child the ability to have another adult in their life that understands them.

This is my advice and by no means is a substitute for your own judgement. Please remember that. : )

Having a Special Needs Babysitter

Who do I hire? You are going to hate this one, so I apologize ahead of time. BUT, so you know, my rule is that my babysitters must be over 18, enrolled/graduated from college, or have a stable job related to my child’s challenges. The age requirement is purely for experience. A young ‘mature’ teenager doesn’t have enough life experience to handle my kids. I am sure there are exceptions, but that’s my rule. Also, they must display some kind of interest in special needs kids, because I am not just looking for someone who wants to make money. 

When SPD Kids Get Sick by Michelle

All parents dread this time of year, when children far and wide transform into SPDs: Seasonal Plague Dispersal units.

In the shiny imaginary world of stereotypes perpetuated by childless mad men, little Johnny sniffles politely into a tissue while his pearled and pumped mommy hovers nearby with homemade chicken soup.

Somehow, I don't think that's how it goes down in even the most picture perfect neuro typical families.  It certainly isn't how it goes down when the plague infested child in question has Sensory Processing Disorder.

I've heard a lot of moms say it's kind of nice when their kids are under the weather.  When the average NT kiddo doesn't feel well, they tend to be... subdued. Snuggly. Quiet.

Jaimee over at Our Life With SPD summed it up perfectly with this post, in which she posed the question "Is that what it's like in a normal house?"

I know that's not what it's like at ours.

When Bear gets sick, that first day or so is like the calm before the storm.  With first post-diagnosis illness I got all cocky - totally deluded that his mellow behavior was the result of mommy's awesome sensory diet - and then the snot hits the fan.

FTF 2011 Announcement!

Happy New Year!  It's that time again - the announcement of the 2011 First Things First contributors! 

The FTF series is dedicated to reminding parents that they need to take care of themselves. A renewal of our commitment to take the time required to nurture not just our children, but ourselves. We have dedicated all of our energy to making sure our children are taken care of, but now is the time to remember to focus on our own physical, mental and emotional health, our spirituality, as well as our relationships with friends and our spouse. This year, I want to encourage all of you to take care yourself. And I hope each month our guest writer will inspire you to do just that.

On the first of each month, the writing series will feature a different guest blogger/writer/author.  If you haven't read the 2010 articles, I highly suggest you check them out (there is a listing under the FTF tab at the top)! 

Without further adieu....

The First Things First 2011 Contributors are...

February: Maria Melee, http://www.mommymelee.com/
March: Sarah Hoffman, http://www.sarahhoffmanwriter.com/
April: Alysia Butler, http://www.trydefyinggravity.com/
May: Shannon Rosa, http://www.squidalicious.com/
June: Stuart Duncan, http://www.stuartduncan.name/
July: Caitlin Wray, http://www.welcome-to-normal.com/
August: Josylyn Gray, http://www.starkravingmadmommy.com/
September:  Laurie Wallin, http://www.lauriewallin.com/
October: Hartley Steiner, http://www.hartleysboys.com/
November: Adrienne Jones, http://www.nopointsforstyle.com/
December: Jennifer Myers,  http://www.jennyalice.blogspot.com/