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.

My mom has always been a list maker, so I guess it was inevitable that she would advise me to write things down. After Danny was diagnosed with Sensory Processing Disorder, my mom advised me to keep a journal so I could determine what was going on with him, what was triggering his meltdowns and what interventions worked.

And she was right, which came as no surprise to my mother, who insists her advice is always spot on. And really, it usually is, though there is no need to tell her I said that.

With some paper I stored on the kitchen counter, I kept track of when and what Danny ate, what sensory activities we did, how Danny behaved in different situations, and how much sleep he got. Anything that could possibly contribute to his sensory regulation, I wrote in the journal.

Over time, I started noticing trends, like how Danny almost always acted up when there was music on the stereo. I realized that if he didn't get some good exercise, he was much more likely to react adversely to disruptions to his routines. I also noticed that he could concentrate longer after heavy work, and that he handled transitions better when we started using a picture schedule.

I probably would have made many of these observations without keeping a journal, but I think I figured several things out sooner than I would have otherwise, all because of the journal. Writing down our schedule and activities helped me be more aware of the many factors that either helped or hindered Danny's sensory regulation.

After a few months, I discontinued my journal. I had figured many things out and didn't feel like I needed it anymore. But in the following years, every now and then, I would start keeping track again so that I could figure out why my son's behavior had changed.

I treated it as detective work, and was amazed when my journaling would uncover sensory problems that I had never thought of. Before recording our daily activities, I didn't realize that whenever the baby cried, Danny started acting really hyperactive, often laughing maniacally. I didn't realize that sitting on an exercise ball made his speech and developmental therapy go much more smoothly. And I sure never connected that Danny acted strangely when foreign smells were in the air, such as when I was cooking a curry dish. In short, I made connections that led to changes in our routines, changes that made life much easier for my son. And definitely easier for me.

It doesn't take much: some scratch paper and a pencil will suffice. And don't worry about writing in complete sentences or spending hours on describing your day. Short phrases are probably more than enough to provide you with the necessary information.

If you are anything like I am, you may be completely overwhelmed right now, especially if your child has recently been diagnosed. The idea of adding one more chore to your list may seem impossible, but trust me, journaling, in the long run, will make your life simpler. You will be amazed at the information you glean by this simple exercise. Information that will ultimately help your child navigate this sensory land mine we call life.

And even if you are a veritable SPD expert, journaling can bring you much needed insight when your child's behavior is perplexing, which let's face it, happens all too often with SPD kids.

What about you? What's the best piece of parenting advice you have ever received?






9 comments:

trydefyinggravity said...

This is excellent advice. It's actually the best advice I got too - track it. It took me a LONG time to start doing it (overwhelmed and all), but once I started tracking everything (sleep, # of hugs requested, illnesses, food choices, bathroom stuff - yes, even bathroom stuff) it helped so much. I could see patterns emerge and it helped me to anticipate the next meltdown. It also helped me talk to his teachers and doctors about what I saw, and so we could better help him.
Great post!!

In Real Life said...

This is wonderful advice!

My best parenting advice, was not specifically special needs related, but applies especially well in our Asperger/SPD child's development; my aunt had said when she was a new baby, "Kids will learn/do things when they are ready to". It's so true! My child has never followed a typical developmental learning curve, but she has learned and done everything on her own time, when she was ready.

Danette said...

Patty, great advice! I think the best advice I received was to keep the kids on a schedule. I found that a schedule was so important for my "typical" child, but as my other child's special needs became more apparent, the schedule became even more important.

Sarah said...

Patty, this is great advice from your mom, and nicely written by you! We have benefitted from tracking too, even though doctors have called me neurotic for keeping a log of symptoms/behaviors/wakeup-times/etc. It's also been helpful, now that our son is finally making some improvements, to be able to look back at where we were a year or two ago--it really makes us appreciate how far we've come.

I actually long for advice, AND I loathe it. Or, I should say, I long for advice that will help, and I loathe all the useless advice that we get. Most of it is the latter, from people who haven't experienced what we experience, who are certain that if their child had screaming tantrums like mine/woke up at 2am for the day like mine/screamed when he heard loud noises like mine that they would have the Perfect Answer.

But sometimes there are people who understand--and they can be people who have experience with SPD kids, or they can just be wise souls, like your mom, who are observant and understand intuitively what will help. The best advice I've gotten from people like this is to take a break from my kids, to take care of myself. I refused to do this for years, citing my inability to leave my son, and it just about took me down. But we can't care for our kids unless we're OK.

Thanks for writing this post.

Patty O. said...

@Alysia, thanks! I have found the same thing to be true. Tracking has helped us soooo much.
@In Real Life, I love this advice. I swear I should have it tattooed to my forehead. It is so hard to remember this, but I know it is true. It really is a great reminder to just chill and keep things in perspective! Thanks!
@Danette, oh, yes! The schedule is sooo important. I think that is number 2 on my list of good advice!
@Sarah, you're right: good advice is so important, but I think I have been burned by so much unhelpful/judgmental advice that I have gotten defensive at times. Thankfully, I have people like my mom and sister who are really wise in this arena and who aren't afraid to gently remind me to look at things differently sometimes. I'm very blessed.

Diane said...

Journaling is a terrific idea. As Sarah mentioned, another benefit is that you have a way to track and appreciate progress your child is making. I started a journal on my computer over a decade ago for my oldest, because the progress he was making was so slow that I needed to prove to myself that something was really happening. It's amazing now to look back and see how much has changed since then.

Heather said...

This is a great idea! I've never kept a daily journal about my son's SPD. But, I blog about our lives and I often go back and read old posts when I'm feeling frustrated. I have noticed trends and it does make a difference in how I react.

Stacey,momof 2 said...

I simply LOVE this post :)

ShesAlwaysWrite said...

Bear's OT suggested we do this early on, and once I (finally!) started doing it I have to say it did make it easier to figure things out.

The behavior therapist we got assigned through EI acted like he thought it was a dumb idea, and he also seemed totally surprised every time I told him about a clear connection between sensory triggers and unwanted behaviors. We discontinued services with him because the journaling helped show us the behavior therapist didn't know a thing about SPD : )