Experts by Patty Porch

Approximately 6 years ago, I found myself taking a trip to my local library. Normally, this would have been an enjoyable outing, especially because I had left my son with my husband; I had free time to browse and relish the quiet. But this was not a normal trip to the library. I was on a mission to find some answers.

Earlier in the week, after a particularly gruesome play date in which my toddler son, Danny, had ended up screaming uncontrollably, I broke down in my car. I had no idea what had set him off, and I didn’t know why he always acted so differently from other kids his age. I knew something wasn’t right.

No one would listen to me, but I knew in my gut that something was wrong.

So, I went to the library desperately trying to find a book with some answers in it. I read books on strong-willed children and parenting techniques, but nothing fit.

I didn’t know where to turn, but I distinctly remembered thinking, “Oh, if someone could just tell me exactly what is wrong and what to do about it, I would never ask for another thing. Ever!”

Once Danny was diagnosed with SPD, I was filled with enormous relief. Finally, someone could tell me what to do. I had some answers. Answers, at last!

Since then, I have sought answers wherever I could find them. I have read every book, magazine article, and website I could find, desperately hoping for answers. And each of these resources has helped. A lot.

But I never found the one SPD Bible that could give me every piece of information I needed. Worse still, some of the advice in these sensory books didn’t work for Danny. Much of it I needed to tweak and adjust for his personality and his sensory needs.

Throughout all this, I often found myself wishing Danny had a more clear-cut disorder, one that had one simple cure or treatment.

The thing is, Sensory Processing Disorder is anything but clear-cut, a fact that has been brought home to me more than ever, now that my 5-year-old daughter has also been diagnosed with SPD. Her sensory issues and how she reacts to them are vastly different from Danny’s. So, what has worked well for Danny doesn’t always help Charlotte. It’s so much a process of trial and error.

Still, until recently, I obstinately clung to the desire for someone out there who could provide me with every solution to any possible sensory issue my family faces. Though I don’t typically relish being told what to do, I yearned for it in the face of sensory problems.

Then, I remembered our first appointment with L, a seasoned OT who is SIPT certified. This woman is an expert. She knew exactly what was wrong with Danny within minutes of meeting him. And better yet, she had answers for me.

Still, her expertise on SPD was limited to clinical work. She had never lived with a kid with severe sensory problems, so when I presented her with my most important question, she didn’t know the answer.

I asked, “What do I do when Danny has his sensory meltdowns? You know, the ones where he screams for hours as if he is being burned alive? How can I calm him down and relieve the meltdown? We have tried everything, and nothing has worked.”

Her answer: “Do all you can to avoid the meltdown in the first place.”

That was all.

I needed immediate, practical help with our daily living, and L couldn’t give that to me. No one could, because they weren’t living our lives.

I had to figure this one out on my own, just as I have had to figure out most of our daily sensory issues. I have cobbled together advice from other mothers, books and articles, and I have paid attention to what works and what doesn’t for my kids. I have treated it as detective work trying to tease out the many causes of my kids’ sensory problems.

So, the bad news is SPD does not have just one treatment that helps all kids. Worse still, there is not one expert in this world who has all the answers for families like mine who deal with SPD on a daily basis.

But here’s the good news:
Though I will likely never find an OT or author who can foresee my kids' every struggle and help us on a daily basis, there is someone who is an expert on my kids.

That would be me.

Though I have no clinical OT experience, I do happen to have expertise in dealing with daily sensory issues and keeping kids regulated. And more than that, I know my kids better than anyone else in the world.

You could even say that I am an expert.

And this means that you, my friends, are also experts.

We may not have degrees in OT, but we, more than anyone else in this world, understand our children and how SPD affects them.

Do you have any idea what this means? It means we are not helpless! We have the power to help our kids! There is hope!

For the most part, it’s up to us, as parents, to figure out what works and what doesn’t. Although this can be supremely overwhelming, it also has the potential for some of the most gratifying experiences you could have in your family. And now, more than ever, we have amazing resources that can help us find answers for our families.

We can each write our own family's SPD Bible.

It's a big responsibility, but who better to take it on?

13 comments:

Stacey,momof 2 said...

GREAT POST... and what caught my attention was the picture of the bible with the puzzle on it...
I would also like a Bible for SPD, but I know that living this life-- is probably the best way of learning how best to "get thru" it.
As the kids get older I see the progress we have both made, and now I am able ...once in a while to help others. Isn't that what it's all about helping others?

trydefyinggravity said...

awesome post (as usual!!) We are our kids best advocate, and the more we spread the word about SPD, the better handle others will have on it.
So happy to be reading you here too :-)
Alysia

Sprite's Keeper said...

Beautifully written and very true. We are the best advocates for our kids. Love this!

Chynna said...

Thank you for this post, Patty. VERY timely! ;D

Chynna
www.lilywolfwords.ca
www.the-gift-blog.com
www.seethewhiteelephants.blogspot.com

Patty O. said...

Thanks!

@Chynna, I thought it might make you smile, in light of the conversation we were having earlier in the week. The thing is, I wrote this weeks ago, because it had been on my mind for a while.
@Stacey, my husband made that graphic. I liked it because at one point, I would have given almost anything for someone to hand me an SPD Bible!
@Alysia, you're right: spreading the word will really help so that others can be more understanding of our kids.
@Jen, thanks!

Андрей Шевченко said...

You a courage example. Many parents receive forces, reading your blog.
I with you agree, what exactly parents in many respects can help the children

clanmiz77 said...

Wow. What a great post, one that I really needed this morning as I was feeling overwhelmed over how much the OT really isn't helping in answering my questions. My daughter's SPD has morphed these last few weeks into super hyped up mode and I cannot figure out the trigger (the change in weather?) and how to get her to calm down. OT therapist was not helpful in ideas. You have reminded that if I think back maybe I can figure out what will work for her.

Stepping On Cheerios said...

You are so right about being our own experts. I had 3 different professionals tell me my son was very smart and was just manipulating me, that I need to use better discipline.

WTF? I was pissed. I've been pushing for answers ever since.

Heather said...

That is so true. We can count on the "experts" but only for so long. We are the ones that know our kids best and can figure out more often than not what they need. It's still frustrating at times but it so much more worth while when we actually get it right!

Caitlin Wray said...

Patty, fantastic post. We waste a lot of energy searching for that All Knowing Expert, when that expert is actually US. Knowledge is power, and the knowledge that we as parents are the best experts on our kids, is perhaps the most important power of all.

Caitlin
www.welcome-to-normal.com

Jenn said...
This comment has been removed by the author.
Jenn said...

I so totally agree with the fact that we are the best experts for our own kids! I am a mom of two FASD stepdaughters and an ADHD son. I am also a teacher. So I would actually like to make one clarification...PERSEPTIVE parents are their child's best expert and advocate!

jennsbusyhouse.blogspot.com

Patty O. said...

Jenn,

Yes, that is a very good point! Not all parents are experts, and it doesn't just fall into your lap, by any means. I do think we, as parents, have the potential to be very knowledgeable on our kids and their issues.