Sunday, July 31, 2011

Thank you!


In case you didn't know, we won the Pepsi grant! I have started our little Lego Club and we already have over a dozen kids signed up. Officially, we start in September, after I receive training from the CNNH. Thanks to all you who voted, spread the word, offered expressions of good luck, and prayed for us. As you can see, the kids really appreciate it!

And so do I!

Saturday, July 30, 2011

Learn to Have Fun with your Senses



Learn to Have Fun with Your Senses, The Sensory Avoider's Guide by John Taylor, PhD is a fantastic book actually written for children with sensory issues. This guide teaches kids how to manage their sensory regulation and have fun at the same time.

Since it is written for children, it is easy to understand and follow for parents, as well as for kids. Each chapter is dedicated to a different sense, and includes a quiz designed to determine whether the reader overreacts to that particular sense. This is pure genius, in my opinion. It not only helps the reader understand what overreacting to sound, for example, is like, but it teaches kids to be aware of their sensory responses. Most kids may not realize that their reactions are unusual, but taking these quizzes can help them see that being bothered by an elevator could be a sign of sensory problems.

After the quiz comes a "Take Charge" section which includes all kinds of useful tips on how to plan around your particular sensory challenge. For example, in the "Learn to Have Fun with Touch" chapter, the "Take Charge" section includes tips on planning ahead for outdoor fun, ("Be prepared for any weather, so it doesn't bother you too much") avoiding surprises ("Ask those who are going to touch you to approach you from the front, so you can be ready to receive their touch"), keeping your skin healthy so it will be less sensitive, and so on.

I love that this book teaches kids to take charge of their sensory sensitivities. This is a skill I am trying to teach my son. It has been a challenge, so this book comes at the perfect time for us.

The next section in each chapter is called "Train your Brain" and is full of fun activities kids can do to help train themselves to handle sensory stimuli better.

It doesn't stop with just sensory games, though. There are chapters on eating well, getting good sleep and taking care of yourself so that the brain can function more optimally.

This book is great, especially for teaching your kid to understand his SPD and how to manage it. I can't wait to start reading it with Danny and Charlotte. I know they will get a big kick out of the fun activities!

Tuesday, July 26, 2011

validation

image from askaboutValidation.com


In the Spring, I happened to have my annual gynecologist appointment. As he worked, Dr. B asked me what I had been up to in the last 2 years. (I always put this appointment off, usually with the intention that I will make the appointment after I lose weight, which never seems to happen, so the appointment is less annual, more biennial.)

I relayed what I'd been doing to keep busy, and I mentioned that Danny had been diagnosed with autism.

Dr. B responded, "I'm sorry to hear that."

I murmured my thanks as I lay there, legs splayed, and I considered what he said. I didn't know exactly how his reaction made me feel. Somehow, it didn't feel like the right response to my news, but I had no idea what would have been a better one. I knew Dr. B meant well and was being kind. Still, I thought there had to be a better way to answer such a revelation.

Over the last year and a half, there have been many responses to the news of Danny's autism, but mostly, they fall into three categories: expressions of sympathy, objections to the diagnosis ("Danny's fine! There's nothing wrong with him! My kid does the same thing!"), or offers of advice.

Of the three, I would prefer the offers of sympathy, hands down. Frankly, the reassurances that Danny is fine and the advice people offer just leave me feeling very defensive, alone and misunderstood, no matter how well-meaning.

Fast forward to my family reunion this past weekend.

On the drive to Chicago, I wondered if anyone would broach the subject of Danny's diagnosis. The last time I saw many of these family members was 2 years ago at the last reunion. Danny had not been diagnosed, but I think it was obvious to most of my family that he was having major difficulties.

My family, as a whole, typically avoids discussing uncomfortable topics like these. I don't think many know what to say, so they avoid the subject altogether, at least with the person directly involved. I understand this and have been known to do it myself. After all, it can feel awkward even trying to raise the topic, especially when you haven't seen the person in years. What do you say?

"Please pass the potato salad. Sooooo....I hear Danny's autistic"?

Still, it sometimes leaves me feeling a bit isolated.

When we arrived at the reunion, Danny and Charlotte joined their cousins on the playground, leaving me to relax on the sidelines. As I watched to make sure Danny wasn't getting over stimulated, my cousin Ann approached me.

Only a year apart in age, Ann and I were very close growing up. Over the years, though, we haven't seen a lot of each other. She lives in a different state, and we both got married and had kids, all of which made keeping in touch difficult.

I was glad to see her and prepared for the small talk I was sure was coming. Instead, we somehow got on the subject of autism. And this is when I had probably the most validating autism discussion with someone not directly affected by the disorder. Ann asked me the most thoughtful questions about what Danny was like, how autism affects him and what that means for his social and school life. She inquired about challenges I face with parenting and disciplining. And she listened as I explained that though Danny appears to not care about others, he is actually quite empathetic.

Thankfully, Ann never offered me a piece of advice. She didn't express pity and she never tried to downplay my challenges in an attempt to make me feel better. Instead she offered me the best gift of all: validation.

Ann's final question almost brought me to tears.

She asked me if I ever wondered, "Why me?" If I ever just got angry that I had to deal with this, angry that my kid was saddled with such difficulties.

I choked on the word "Yes!" as I tried to keep from crying. Ann had tapped into the very issue I had been struggling with for months. After Danny's diagnosis, I wasn't surprised by my anger; it seemed appropriate. Eventually it subsided, replaced by a feeling of determination to get Dan all the services he needed.

Recently, though, the anger has resurfaced, surprising me by both its intensity and my inability to move past it. Why now am I feeling so angry and hopeless? Shouldn't I be past that at this stage? What's wrong with me that I'm so sad and angry? I have been feeling guilty and weak and wondering if the anger will ever go away.

But when Ann asked me that question, somehow I felt peace. She validated me, confirming that, yes, dealing with autism is difficult. Sure, everyone has problems, some much more heartbreaking than mine. But, that fact in no way diminishes my pain. It was almost like she had given me permission to continue grieving, as long as it takes.

And apparently, that is exactly what I needed.

Friday, July 22, 2011

"Special Diets for Special Kids" review


Special Diets for Special Kids by Lisa Lewis is a must-have book for anyone interested in starting a gluten-free/casein-free diet. This book is teeming with recipes designed with kids in mind.

I have never read a cookbook that had quite so much information about nutrition and science. This book is for those whose kids are on a gluten-free/casein-free diet, and there is a whole section dedicated to why this sort of diet might be desirable for your child. It goes into how diet can help kids with autism and other special needs, and it details why cleaning up our kids' diets is so important.

What I liked about this book is it had some unusual sections, ones I think especially good for kids. There is a drinks section, as well as one on holiday food. Also included is a section of ethnic food, condiments, and dairy substitutes. I had no idea that you could make substitutions for evaporated milk, whipping cream, and sweetened condensed milk!

My kids are not on a GFCF diet, mostly because the prospect seemed so daunting to me. How could I eliminate both dairy AND gluten, when they are in just about everything? The author points that out, too. It's amazing how you can find these ingredients in things like spices and soup mixes--foods you would think are safe.

With over 200 recipes, this book has shown me that there are plenty of foods my kids can still eat and it has encouraged me to try out some changes to our diet. While I will in no way go cold turkey on casein and gluten (I just don't think I could handle that at this time), I am definitely going to make some small, sustainable changes and see how that goes.

If you are interested in learning more about GFCF diets and autism, or if you are just looking for some more recipes to sustain your GFCF diet, I recommend checking out this book! It includes a free CD of printable recipes.

Tuesday, July 19, 2011

Food, Hong Kong style!

My birthday cake in Hong Kong. My friends covered it with all kinds of prawn crackers. Yum.


I have always been a food lover. I'm not very picky and have moderately adventurous tastes. I think the credit for that goes to the year and a half I lived in Hong Kong when I was in my 20s. Hong Kong is a melting pot of cultures; all manner of exotic cuisines can be found there. I ate Sri Lankan, Indonesian, Thai, Japanese, and Korean food, and what a gustatory adventure I had!

Before living in Asia, however, the my most exotic meal came from Wayne Moy's takeout place on 63rd Street. Chop suey and pork fried rice were about as foreign as my family got, food-wise. Mostly, we ate lots and lots of meat and potatoes--roasts, pork chops and chicken, with a couple of hot dishes or a side of Minute Rice thrown in once in a while to spice things up.

When I was informed that I would be serving in Hong Kong, I thought, "No sweat. I LOVE Chinese food! And I LOVE fortune cookies! I will have no problem adapting to the food." At the time, I thought I was relatively well-rounded and cosmopolitan. After all, I grew up in Chicago, how sheltered could I be?

Oh, how very naive I was!

Here are some lessons I learned about food while I was serving in Hong Kong.

~~~~Minute rice is an abomination. It should never be consumed in any form. Ever.

I really mean this.

~~~~Fortune cookies are not Chinese. I never saw a single fortune cookie the entire 16 months I lived in Hong Kong. They are purely an American invention. Instead, dessert was typically fresh exotic fruit.

~~~~Mangoes are the food of the gods. I am convinced that the forbidden fruit was a mango rather than an apple. I mean, seriously, who in their right mind would give up paradise for an APPLE?

A mango, on the other hand? Yeah, I'd be tempted, alright.

~~~~Before taking an enormous bite of a food, make absolutely certain you know what the ingredients are. You may think you know what is in that fruit salad, but you could be seriously wrong. Just because fruit salad in America is typically made with whipped cream doesn't mean the same can be said for Hong Kong. In fact, you'll have a heckuva time finding Cool Whip anywhere in the city.

The same, unfortunately, cannot be said for Miracle Whip.

And if anything can make you gag, it's a mouthful of fruit salad dripping with Miracle Whip. Trust me on this one.

~~~~If you happen to be enjoying a particular food, do yourself a favor. Don't ask what's in it. You can't handle the truth.

~~~~With food, as with so many aspects of life, it's all relative. You may think those fish balls are revolting, but after being served chicken's feet and cow's intestines, they suddenly become downright delicious.

Me with a chicken's foot. I have to admit, I never did actually eat them. This is the one food I could never force myself eat. They just seemed way too much like baby skeleton feet. You tell me, could YOU eat them?


~~~~You can't make instant pudding with soy milk. It just doesn't work.

~~~~Those tiny red Thai chili peppers are like 100 times hotter than jalapenos. When you decide to make salsa using the peppers, only use one. And for the love of everything that is holy, DO NOT rub your eyes after touching one. You will go temporarily blind.

~~~~Oyster sauce--much like ketchup in the States--can make almost anything palatable.

~~~~If you know an old woman who routinely fishes vegetables out of the garbage and then sells them to people on the street, do NOT let her cook for you. No matter how good the food smells or how normal it tastes, don't eat it. You will regret it for the next 15 months.

And so will your bowels. They will never be the same again.


We're pretty sure this granny fed us garbage. To this day, I still am nauseated by the taste of tofu and cashews.

~~~They say that necessity is the mother of invention; I say desperation is. When you cannot go another day without a piece of cake, you will learn that it can be made without an oven. Steamed banana bread is delicious!

~~~~As in other aspects of life, taking risks can bring great rewards. Some of the best food I have ever eaten, I ate in Hong Kong. My mouth still waters when I think of a particular shrimp dish I ate and the steamed pork buns at dim sum. And I still crave the pumpkin curry I from the Sri Lankan buffet in Central.

Because I was willing to try new things, I learned about all kinds of tastes and cuisines. I learned that ginger is a root, not a powder, and garlic is not used only in Italian food.

Most of all, though, I bonded with people over the food they served me. I learned that when someone makes food for you in Asia, it is their way of showing you love and hospitality. And when you graciously eat the proffered food, you show your appreciation for their sacrifice.

And I learned there are people so generous that they will serve you a feast even when they can scarcely afford it. And to turn your nose up at the offerings is insulting.




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For more posts on food, visit Jen at Sprite's Keeper.

Monday, July 18, 2011

"The Book on Writing" Review


I have to admit when I was approached to read and write a review of The Book of Writing by Paula LaRocque, I was a touch apprehensive. I was eager to read the book and hopefully learn tips to improve my writing. But I wasn't sure I'd have the motivation to actually finish it and write a review. After all, most writing books tend to be a bit boring.

Between college, grad school and teaching both college and high school writing courses, I have read my fair share of writing books. Most of them tend to stick to purely grammatical issues, and it seems like they all cover basically the same problems.

This is why I was pleasantly surprised by LaRocque's book. First off, her writing style is so easy and enjoyable to read. Her examples are surprisingly fun; she gives wonderfully overwritten and verbose examples of what not to do and then follows them with a cleaned up version.

Secondly, I love LaRocque's take on good writing, which is to be as clear and concise as possible. The fewer words you can use to get your point across, the better. She proves that using fewer words can often be much more powerful than flowery descriptions, but she also admits that different situations call for different styles, an admission not all writing experts make. For example, though an advocate of the active voice, LaRocque admits that the passive voice is preferable in some cases.

Another great thing about this book is it is not dedicated to grammar, and while mechanics are discussed, they do not monopolize the text. Instead she focuses on more advanced writing issues, like avoiding wordiness, using metaphors well, and building suspense.

As I read this book, I found myself analyzing what I was reading and writing and looking for ways to make it tighter and more vivid. I know I have a long way to go, but I'm excited to have a book that is so easily accessible to guide the way.

If you are looking for a book that can help you improve your writing, check out The Book on Writing: The Ultimate Guide to Writing Well. When I go back to teaching, if I am given the opportunity to choose the course text, I will definitely opt for The Book on Writing.


Wednesday, July 13, 2011

Farts and Giggles



Lately, it's all about farts in the Pancake home, with a little bit of belching and poop thrown in for good measure. Danny talks about farting almost as much as he does about LEGOs, and that's saying a lot, believe me.

It's like he has suddenly morphed into a.....well, a....I guess it would be a prepubescent boy, which is exactly what he is.

Danny isn't content to be the only one delighting in flatulence, though. He has recruited both of his siblings--his sweet, delicate little sister and his innocent, toddler brother. He's a bad influence, that one.

Hardly a morning goes by where I don't hear Charlotte or Danny yelling, "Get your butt out of my face!" or recommending to the other, "Smell my butt!" and once after farting, Danny ordered me to do so. He was flabbergasted when I declined his invitation to smell his nether regions.

They also recently taught Tommy how to fake burp. My little two-year-old cherub will imitate a belch and proudly proclaim, "Tommy burpted! Tommy burpted!" His siblings reward him with peals of laughter, which of course only encourages him to continue.

Along with that, Danny has channeled my twin brother. He routinely sits next to me, lifting a butt cheek in my direction and letting loose a series of disgusting farts. I swear, I'm asking for a gas mask for Christmas.

If I ever want to cheer Dan up or distract him, all I have to do is talk about how much his flatulence reeks. Danny lights up, as he agrees proudly that he does indeed have stinky farts.

Most of this I can handle. After all, I'm no prude. I love some low-class bathroom humor as much as the next girl. Growing up, my siblings and I would routinely bring my mother to near-puking with our dinner table conversations.

Still, after a while, it can get a little crude. Especially when Danny calls someone a "farthead." I try to get him to cool it, to put a lid on it. And I forbid him from calling other people "farthead."

I don't think I'm making much headway, though.

Recently, Danny spent a couple hours with his 9-year-old cousin. They laughed and joked endlessly, rolling on the floor and wrestling. It was a delight to see them getting along so well. They each have a tendency towards getting a bit out of hand when they are together. Dan and T tend to rile each other up, often ending up in some trouble.

This time was different, though. We only had to redirect them a couple of times, and the boys were having a ball. Their topic of conversation was troubling to me, however. They talked of nothing but farts and poop and belches the entire afternoon.

My sister, sensing my annoyance, leaned over and said, "Patty, this is all totally age-appropriate. This is what boys do."

And I realized she was right. 8 and 9-year-old boys like to talk about farts. They are devoted to all things potty humor, as disgusting as that might be to a refined adult, such as myself. (I'm totally kidding here. I'm just as vile as Danny. Just ask Bil about all the times I gave him a dutch oven.) And that means Danny is just being a regular boy!

So, for once in Danny's life, an annoyance has popped up that has nothing to do with autism. It has nothing to do with his IEPs or whether he will ever learn those blasted word problems in math. It's not about coaxing him to cooperate with his numerous therapies, and it has nothing to do with his inability to make friends. In fact, just the opposite. Danny's love for fart jokes seems to have helped him bond with kids his age.

And that? Well, THAT makes me smile.


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For more lighthearted posts, go to Sprite's Keeper's Spin Cycle. I'm willing to bet the other posts will be much more refined than mine, so rest easy. After all, there's only so much fart humor one can take in a day.




Tuesday, July 12, 2011

Taking the train to Winky-ville


When the kids were babies, Bil came up with the term, "taking the choo-choo train to Winky-ville" when referring to sleep. We aren't typically super cutesy with names for things, but that one stuck. It's a cute term that belies the stress and frustration that was on the horizon for us.

As a baby, Danny was a phenomenal sleeper. He slept through the night at 2 months of age, and continued to do so the rest of his life.

With a few notable exceptions.

Before being diagnosed with SPD at around age 2, he began waking in the night screaming. Absolutely nothing we did would calm him down. Drinks of water, rubbing his back, administering gas drops, and singing all seemed to make these episodes much, much worse.

Danny would arch his back and scream and cry for about an hour before his sobs slowed.

With time, we discovered two calming techniques that worked for him: taking him for a drive and letting him watch Baby Einstein videos.

Thankfully, these episodes were rare; they only occurred every couple of months. The severity, however, was such that I was tempted to take him to the ER a couple of times. It seemed like the kid was in excruciating pain. I remember frantically running around the house trying to think of what we could do to help him calm down.

I can think of few times as a mother when I felt more helpless, watching Danny scream and not being able to help him. My extreme fatigue only heightened my frustration.

Thankfully, once we got him occupational therapy and started treating his Sensory Processing Disorder these night episodes gradually disappeared.

Interestingly, it wasn't until years later that I even connected these episodes to his SPD. We had so many other things going on at the time, I never really thought much of those wakings. I just felt lucky that they stopped.

Charlotte (who is 5) has been an entirely different ball of wax, sleeping-wise. As early as infancy, we discovered the dangers of allowing her to become over tired. If Charlotte missed a nap, her sleep would be disrupted for days.

When she began waking in the night screaming, I didn't know what to do. If I thought Danny's night episodes were severe, I hadn't seen anything yet. Charlotte screamed for well over an hour.

In her case, Baby Einstein didn't work. Neither did rides in the car.

In fact, nothing we tried succeeded in calming her frazzled nerves.

And Charlotte's episodes happened with an alarmingly increasing frequency. By the time Tommy was born, Char was waking at least once or twice a week, sometimes even more often. It was rough. Between night feedings for Tommy and night screamings with Charlotte, I thought I would lose my mind from exhaustion.

At first, I thought perhaps she was having night terrors, so I did extensive research on how to treat them. Didn't help.

Then, I wondered if because we were giving her so much attention when she woke, we were inadvertently encouraging her. So, we tried, very unsuccessfully, to let her cry it out. (You know, the old Super Nanny approach to sleep problems, which by the way, does NOT work with special needs kids.)

Later, I just cried with her, holding her very tight and rocking, while rubbing her bare arms.

None of our techniques really helped, though the last one seemed to assuage Charlotte slightly. The only thing I really understood about the night wakings was she was more likely to have them when she was over tired. Although I tried valiantly to get her to nap, Charlotte was at the age where she resisted mightily.

Finally, when I took Charlotte last year to be tested for SPD, I mentioned the night wakings to the occupational therapist. By that point, I had connected Danny's wakings to Charlotte's. I put two and two together and finally wondered if SPD could be causing these wakings. (The only explanation I have for my denseness in this case is that I was experiencing EXTREME sleep deprivation. Remember, I also had a newborn at the time.)

The therapist informed me that the sleep disruptions were almost definitely because of her SPD. It was like her poor little over stimulated brain couldn't calm down, even in sleep.

Thankfully, after we started OT with Charlotte, the night wakings tapered off. As of this writing, Charlotte has not had an episode in almost a year. If she wakes up at night because of an accident, she goes immediately back to sleep once we've cleaned her up. No crying, no screaming for hours.

And that alone is worth the thousands of dollars we have paid for Occupational Therapy, equipment, and an iLS program!

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Check out the SOS Research blog for more posts on sleep and kids with special needs.

Monday, July 11, 2011

Hope Harris and her "Cousins Jamboree"

Hope Harris

When we got our copy of Hope Harris' "Cousins Jamboree", I have to admit that the record really took me by surprise.

Before we get into it, though, this needs to be said-- if you're a parent like me, you've probably been overly saturated with an enormous amount of Kids' music, mostly from videos. As a result, you've probably committed a great deal of it to memory. Against your will, even.

My guess is (stop me if I'm wrong here) when you see reviews for kid's music you probably get a little bit, er, I don't know-- let's say "apprehensive". Reading "It's got really catchy songs" may bring to mind times you were doing menial labor (the dishes) and humming "The Transformers" cartoon theme to yourself, and couldn't get it out of your head. all. day. long.

I'm no different. Even though I like some kids' music, the "old wounds" make me instantly skeptical when I'm presented with new choices in kid's music. Honestly, I used to give very little thought to whether my kids would actually like a certain type of music, because, let's face it-- I've fooled them. I've fooled them into liking all of "my music" so I can tolerate long car trips listening to "Grizzly Bear" and "Radiohead" without enduring any heckling from the peanut gallery.

Enter-- Hope Harris.

And suddenly, as I listen, I'm thinking a lot less about what preoccupies my musical tastes today, and thinking a lot more about what initially attracted me to music as a kid-- the energy.

At age 10, my first cassette purchase was the "Footloose" soundtrack. Granted, it was mostly a reactionary move--I really needed to listen to something other than the Kingston Trio and Henry Mancini, so I dug deep into my vacation allowance and reached for a tape from the Kmart clearance shelf-- one that I knew would provide a lot of energy and spirit to liven up the next 8 hours in the back seat of the station wagon. When I listen to the title track to Hope's "Cousins Jamboree", it takes me back to when I first fell in love with the "Blues Brothers" soundtrack. Big gospel organ sounds, big choruses, big rhythms-- all of it so huge and alien and exciting compared to the soft ballads that were usually coming out of the radio. Hope's music is like that-- big, friendly, and full of sound and energy, everything a growing child needs. Enjoy the video.


Other favorite tracks: "I Love Apples", "Hang on Friend", "I am an Alien", "Holcomb Rock Road".

Thursday, July 7, 2011

Autism Book Reviews


The Child with Autism at Home & in the Community by Kathy Labosh is a handy reference for parents ofkids with autism. Labosh gives tips on everything from how to avoid getting poop on yourself when your child has decided to play with the contents of his diaper (go up to him from behind and hook your hands under his armpits and carry him to the bathtub. I know, brilliant, right?) to ideas on how to help your child handle a movie theater.

Labosh, herself a mother of two sons with autism, has compiled a list of over 600 tips for making life with autism easier. I cannot tell you how many times, while reading this book, I wished fervently it had been published years ago. So many of these tips would have made an enormous difference in my life as a parent of a young kid with autism. Just the bathroom section alone could have saved me much in the way of misery with regards to potty training, baths and hair washing!

Still, there are more than enough tips for older kids that will assist me in our daily lives!


The Child with Autism Learns About Faith, also by Labosh, is a unique book filled

with scripture lessons. I have never seen a book like this for kids with special needs. Labosh gives us lessons for Cain and Abel, Noah, Abraham, and many other great Bible stories.

There are 15 lessons in all, and each provides a very detailed list of materials needed. The lesson plans are very easy to follow and outline a variety of activities. They include scripture reading, group activity time, and videos/songs.

Reading through the plans, it is obvious Labosh has a solid understanding of how kids with autism learn. Each lesson flows from one activity to the next quickly enough to keep kids interested and focused. Also, they all include fun visual aids (like stuffed animals for Noah's Ark) and activities.

Though the book seems to be geared specifically for Church leaders and/or Sunday School teachers, the lessons can also easily be used at home. I can't wait to use these lessons for our family scripture study!

Sunday, July 3, 2011

Letter to Myself as a Newish Mom

The other day, I was giving a mom some advice. This mom is very new to the world of SPD, autism, IEPs and all the other abbreviations that come with special needs kids. She was understandably confused and scared, and more than anything, she needed reassurance.

As I wrote my friend a message, I realized that I happened to have quite a lot of reassurance to give. Somewhat amazed, I recognized that I feel so infinitely different now than I did 6 years ago when I was just entering the world of SPD, autism, and special needs. I found myself wishing someone had given me some of this advice before Danny was diagnosed. I thought, I wish I could go back in time 7 years. I would have a heart-to-heart with myself back when I was just learning about SPD. There is just so much I wish I could say to that younger version of me, that woman who was struggling so mightily to hold everything together.

So, here’s what I would say to my Pre-SPD/Autism Self:

Dear My 32-Year-Old Self,

I know things are really, really rough for you right now. You’re consumed with worry about Danny. You wonder if he’ll ever speak and if he’ll ever grow out of those horrible meltdowns. You wonder if you’ll ever get to the point where you can enjoy normal outings to places like the park and the pool or if you’ll always have to wrestle a screaming, flailing, frenzied toddler into the car when it’s time to leave.
You worry that someday someone will report you to DCFS because Danny freaks out so badly when you leave the library it definitely sounds as if you are hurting him. Or kidnapping him.

You wonder if you’ll ever have fun at a family function again.

I know you’re exhausted and so, so discouraged.

You blame yourself. Of course, you do–that’s so typical of you, but you’re wrong. It is NOT your fault that Danny isn’t talking yet. It is not your fault that he has Sensory Processing Disorder, and it’s definitely not your fault that he throws tantrums loud enough to wake the dead.

Things are tough now, Patty, but here are some things I would like you to remember. Things that will make life much easier for you, if you can just muster enough faith to believe that they are true.

1–It’s going to be ok. As unbelievable as that sounds, it really does get better. So, so much better that it will take your breath away when you realize how far Danny has come! You will be able to take him to places you never imagined possible, like crowded museums and birthday parties. Danny will amaze you everyday with the strides he is making.

This will not happen magically; it will take hundreds of hours of research, and patience and accommodations, tons of trial and error and many, many tears (yours and Danny’s), but know this: your hard work WILL pay off. You will see results.

2–That said, you need to remember that there is no cure for Sensory Processing Disorder (or autism, but let’s not get ahead of ourselves. You won’t get that diagnosis for some years to come, so forget I said anything). Don’t waste too much of your time trying to find a cure or a quick fix or wishing Danny were “normal.” Danny will most probably always have sensory issues, but he will learn how to regulate himself and how to deal with his emotions. He will overcome some of his challenges, while others, he will learn to live with (much like how you have learned to live with YOUR sensory issues).

3–Get on the same page with Bil. He’s a wonderful husband and father, but he’s not a mind reader. He’s just dying to help you and Danny, but he needs your guidance. After all, he’s at work all day long; he’s not around to see all that goes into a typical day with Danny. And try to remember that, hard as it is to admit, yours is not the only way to do things. Bil may have different parenting methods than you, but you need that other perspective. And so do your kids!

4–Trust your instincts. They really don’t lead you astray. No matter what everyone else tells you, you are the expert on your kids and your instincts are spot on. (Well, usually. That instinct you get to throttle your kids when you’re PMSing? Yeah, that’s so not appropriate.)

5–It’s okay to be sad, even furious that you have to deal with SPD and autism. It’s okay to be angry that the universe saw fit to give these challenges to your son. Just find a way to channel that energy; you will feel infinitely better once you have a plan.

6–Don’t worry so much about what other people think and say. This is so important, but seeing as how I still struggle with this issue, I don’t know how much advice I can offer. Still, forget about the people who are critical. They have absolutely NO idea what it’s like to live a day in your life. And they just do not matter. Really! They don’t.

7–Give yourself a break. You’re doing the best you can, and you need to take care of yourself if you can ever hope to help your kids. Take time for yourself and don’t forget about your passions, like writing. Also, when your weight fluctuates as a result of stress, forgive yourself. After all, you are under tremendous pressure; criticizing yourself is only going to exacerbate your stress.

8–And now for potty training. Just let it go, it will come. It really will. It won’t come when you want it to, and Danny most definitely will not be potty trained as early as everyone says he should be, but it will happen.

Eventually.

Just have patience, make sure you always have plenty of bleach on hand, and remember that this difficulty is not his fault. Or yours, for that matter.

9–Be honest with your family and friends. Don’t downplay your struggles just to avoid being pitied. People want to help. And they can only do so if you tell them what you need. Pretending everything is fine when you’re barely hanging on doesn’t do anyone any favors.

On the other hand, be very careful who you turn to for help or acceptance. Just because people call you a “friend” doesn’t mean they are kind or validating, so quit looking to them for something they can’t give you. There are people in your life who are toxic and selfish, people who will suck the life out of you if you let them. Get rid of them. You don’t need “friends” like that, especially now!

10–Enjoy your children. Take time out from all the worrying to just have fun with your kids. Believe me, in the next 7 years, you are going to have LOADS of fun. While you may have to adjust your expectations, you will still be able to do so many great things with your kids. Sure, Disney World may not ever happen, but let’s be honest here: you HATE amusement parks as much as your kids would. Face it, your kids inherited many of their sensory problems from you. That’s ok! Use that knowledge to empower yourself.

11–You can handle this. You really, really can. It’s going to be so hard. You’ll cry oceans of tears in the years to come. You’ll rail against God and be snippy with your mother. But you are strong enough to handle this. You really are.

And so are your kids.

Love,
Future Patty,
the SPD mom who is not just surviving, but thriving. Honest!