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.

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.

Saving Your Sanity During Bad Weather by Patty

My kids always do better and stay more regulated when we are able to play outside and get some good exercise. This is especially true of Danny, my 7 year old, who is a sensory seeker. The activities that calm him the best are ones that incorporate a lot of heavy lifting or deep pressure, like swimming, bicycling, and riding his Razor scooter. These are all great activities.

In the summer.

But as we live in the Midwest, Fall and Winter often bring weather that prohibits outdoor activity. There is a big difference in Danny’s behavior and mood when we stay inside too much, and especially when we watch too many videos. Over the years, I have come up with several activities that we can do indoors which give my kids lots of good exercise.

Perhaps some of them might work for you and your children.

Get outside when you can

Though it can be pretty cold in the winters here in Illinois, we still try to get the kids outside as much as possible. I know it often takes longer to get them dressed for the weather than they actually spend outside, but it is worth it. Any fun snow activities are good for giving kids deep pressure, like building a snow man, having a snowball fight or making snow angels. Just walking in the snow gives kids lots of good resistance.

Scooter board races in the house

We have 3 scooter boards and often have races in the kitchen (where there is no carpeting and plenty of space). There are so many fun activities you can do with scooter boards, and they are relatively inexpensive.

Here is an article with specific scooter board activities you can do inside.

Let the kids do some typically outdoor activities inside.

I have been known to let the kids roller skate, play ball, and even ride a small bike in the house.If you have the room, and especially if you are lucky enough to have a basement, you may want to consider allowing your kids to take their outdoor games indoors for the winter.

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.