Thanks for joining me along the journey! I'd love to hear what you want to know ... do you have questions about sensory processing disorder, gluten-free/dairy-free diets, homeschooling, faith, life in general? Send me a note or post a comment and I'll try to write something that addresses your interests and questions!

Sunday, December 26, 2010

Six Months and Six Years -- Wow!

Where DOES the time go?!  Seriously!  Within days of each other, my firstborn had his sixth birthday and my youngest turned six months, and I'm reeling.  Josiah is a third of the way out of the house (assuming he moves out around age 18) and Malachi is halfway to a year -- and I feel like I JUST had them a week ago!
Ever since Malachi arrived, Josiah has seemed so huge and grown up to me.  I consistently underestimate the strength it takes to sweep him up, and how high I need to keep my arms to keep him from hitting the ground when I swing him in my arms.  Don't get me wrong, he's still small for his age -- he just seems so huge to me these days!  And perhaps it is the presence of the new (does that term still apply at six months?) baby, but he seems so much more "different" after this birthday than he has at any other, so much more grown up and mature.  His catch-phrase for at least a week following his birthday, anytime he did something we were complimenting him for, was, "Of course, mom, that's what six year olds do!"  Well, gosh, if I'd known that, I'd have turned him six much sooner!  (Or maybe I wouldn't have!)
There are still plenty of areas that keep him behind his peers (due to his SPD) -- he still doesn't sleep well, still has lots of potty accidents during the day and sleeps in a diaper at night, still makes too much noise and moves too much compared with other kids his age -- but he's growing up so much lately!  He seems to be gaining an awareness of what it means to be growing up, and where many kids revert to more babyish behaviors when a younger sibling arrives, he seems to have embraced his big brother role for what it means to be older and more capable.  And I'm simultaneously celebrating and mourning that!
For his part, Malachi is growing like a little weed himself.  He moves around much more than Josiah did at his age -- not exactly army crawling, and not entirely using rolling as locomotion, but a strange combination of twisting and spinning that propels him around the floor.  He no longer stays exactly where he was put -- if we leave him on his back, head facing north, we'll find him on his belly, head facing east two feet from where he was originally, in just a few minutes!  And he's beginning to sit on his own -- he can support himself and keep his torso upright, but his balance isn't quite in tune yet :)  He's also getting better and better at using his hands to reach out and grab what he wants and manipulate it somewhat.  And there is NOTHING he isn't interested in grabbing!  And most of it goes into his mouth to be chewed on and tasted :) 
The cutest thing he's doing recently is "talking" to us.  He's only just beginning to discover his voice and the range of noises it can make, and his babbling does resemble any actual words just yet, but he is clearly grasping the concept of using it to communicate.  The other day, I had him in his baby swing while I was folding laundry.  For a long time, we were both quiet, he focused on the fish twirling above his head and me on the laundry.  When I finished I sat down across from him and caught his eyes, and he looked straight at me and started babbling noises with the most adorable "Mom, you should have seen this!" expression on his face.  He seems to really be paying attention to the signs we are showing him, and while he doesn't use them yet (except for mik -- I *think* he's using that one sometimes), I think they are helping him sort out words and learn language already.
I can remember being so excited at every new milestone Josiah made as a baby, feeling the newness of his growing abilities and intellect right along with him.  Knowing that Malachi is most likely my last baby, these moments are more bittersweet -- I treasure them even while I mourn the loss of a stage he has passed and will never return to.  Gone already is the tell-tale newborn sound to his cry and voice, the tiny face and features of a newborn, the downy-soft newborn fuzzy hair, even the dramatic startle reflex.  In some ways I feel like I missed so much of those early stages just trying to keep him from crying all day and night (he was "colicky" for the first two months, until I cut gluten from my diet!), and I sense the loss of it even while I celebrate the new skills and features he develops.
Someone once shared with me a quote about motherhood, something along the lines of "The days seem to last forever, but the years fly by!"  Such truth, and while it's easy to get lost in the monotony of the everyday, fighting the same discipline battles and food challenges and chores struggles -- and playing the same games and reading the same stories -- over and over again, I pray I will not lose sight of just how fast it all really does go by.  Someday, far sooner than I realize, I'm sure, I will pine for the days when several rounds of Guess Who and requests to pick up the Go Fish cards while I stir the soup with one hand and balance a fascinated-with-life infant on my hip with the other filled my days and weeks.  Oh, there will be new joys, to be certain -- but never again will things be as they are right now.  And as hard as the days are sometimes, as the years fly by, I realize more and more just how blessed these days are!

Friday, December 17, 2010

"Cooking for Isaiah" Review

I've been busy :) Part of what has kept me busy is this excellent new cookbook full of dairy- and gluten-free recipes!  Written by the editor of the Everyday with Rachel Ray magazine (and a former bakery owner), the recipes were created for her adolescent son with gluten- and dairy-intolerances.  Her goal was to make GFCF foods that are just as yummy, or even more so, than their gluten- and dairy-filled counterparts.  And she succeeds! 

One of the things I like best about this cookbook is that she doesn't try to substitute a lot of soy products for the dairy; instead, she uses other ingredients and spices for flavor and texture, like mashed beans to make a creamy soup and adding sundried tomatoes to pancake mix to make wafflebread for sandwiches. 

Some of the recipes are a bit labor intensive, especially if you're just getting started.  For example, the chocolate silk pie (which I haven't yet tried but looks delicious!), requires that you (1) make Silvana's All-Purpose Flour Mix, (2) make chocolate cookies so you have them for (3) crushing the cookies for the crust -- not to mention all the rest of the work for the pie filling (which involves separating eggs and double-boiling multiple times).  You could buy store-bought gluten-free cookies to crush (if you can find them), but I would think best results would be using her own recipes. 

Other recipes, though, are super easy!  The first thing I tried was a recipe for pumpkin muffins with crumble topping -- once you've mixed the flour (which is easy, and only needs to be done every several recipes, as one batch will last a while), it's really very quick and simple to add the rest of the ingredients, pour into cupcake liners in a muffin tin, and bake.  And they were tasty, with a fantastically fluffy, crumbly texture!

The most recent recipe I tried was her "mom's banana bread" recipe.  Like the muffins, super fast and simple -- and this was at least as good, if not better, than any banana bread I've ever made.  Both my husband and my 6-year old ate it up in one afternoon, and they are both incredibly picky eaters, so that's really saying something.

I also love how creative she gets with things to make gluten-free foods fun and appetizing.  For example, she uses slices of the banana bread to make grilled peanut butter and bacon sandwiches (think grilled cheese, with peanut butter and bacon on banana bread instead of cheese on wheat).  So creative and exceptionally tasty!  She also uses the waffle iron to make all kinds of breads, both sweet and savory, particularly for making sandwiches (sandwich bread is the hardest to replicate in gluten-free varieties). 

While not unhealthy, the priority in this cookbook is taste -- she's not afraid to use oils and sugar and white (instead of brown) rice to make things tasty.  Some have criticized that there are healthier GFCF cookbooks on the market, and while I'm sure that's true, there are times I just want things to taste like they did when I cooked with gluten and dairy, even if it isn't uber healthy, and for that, this cookbook delivers.  There are still plenty of healthy options as well (recipes loaded with good veggies and proteins), giving it the perfect balance for my family.

In the foreward, Rachel Ray writes that it "boggles [her] tastebuds" that the recipes lack gluten and dairy, and given my husband's two-thumbs up approval of every recipe I've tried so far, I'd have to agree.  If you're trying to find innovative ideas and fantastic taste/texture recipes that will entice even your picky eaters to enjoy GFCF foods, this cookbook will be your new best friend :)  It is quickly becoming mine!

*Fine print:  I paid full price for this cookbook on Amazon and was not offered any incentive whatsoever for trying or reviewing it, nor do I expect to at any point in the future -- I'm quite certain nobody associated with publishing this book has any idea I'm alive or using the cookbook.  I'm just sharing a great thing I've found!

Sunday, December 5, 2010

Gluten-Free, Dairy-Free, Soy-Free Recipe: Pancakes

These pancakes are SOO yummy even my gluten-eating husband eats (and enoys!) them!

1 C rice flour
3 T tapioca flour
1/3 C potato starch
2 tsp sugar
1 1/2 tsp baking powder
1/2 tsp baking soda
1/2 tsp salt
1/2 tsp xanthan gum
2 eggs
3 T canola oil
1 1/2 to 2 C milk substitute (rice, almond, hemp, etc.)

Sift together dry ingredients.  Stir in wet ingredients until very few lumps remain.  Pour into heated, oiled pan on medium heat; flip when bubbles begin to form on top.

*We add a variety of things to the batter to make flavored pancakes: blueberries, bananas, chocolate chips, cinnamon and brown sugar/maple syrup, vanilla, etc.  You can also add ground flax seed for some extra fiber.

TIP: I make several half-batches of the dry ingredients and store them in ziploc baggies so I can make a quick batch of pancakes by only adding an egg, oil and milk to the dry mixture for a faster breakfast!

Friday, December 3, 2010

Gluten-Free, Dairy-Free, Soy-Free Recipe: Pumpkin Soup (Sauce)

Here's my current favorite creamy-pasta substitute :) It's actually a recipe for a pumpkin soup, but I make a few alterations to the recipe and make it a sauce for a pasta dish. Here's the original recipe with some notes ...about my alterations:

Pumpkin Soup (sauce)
1 C sliced carrot (I do about a cup and a half)
3/4 C coursely chopped green pepper
1/2 C chopped onion
(I also add about a cup of thickly sliced zucchini and/or broccoli just to add more veggies, because I like them!)
1 Tbs cooking oil (we use olive oil, usually, though coconut oil would probably work splendidly in this as well)
1 can unsweetened light coconut milk
1 can pureed pumpkin
14 oz reduced sodium chicken broth
2 Tbs packed brown sugar
1 medium fresh jalapeno, seeded and finely chopped
3/4 tsp salt
1/2 tsp ground ginger
2 Tbs snipped fresh cilantro
(I'm not a fan of cilantro or jalapeno so I put in a dash of chili powder for some spice and added peanut butter to give it a more Thai flavor)

In a large saucepan, cook carrot, pepper and onion in hot oil over medium heat, about five minutes or until almost tender. Remove from heat. In a bowl, combine pumpkin, coconut milk, and broth. Stir in brown sugar, jalapeno pepper, salt and ginger (and/or chili powder, peanut butter, etc.) Stir pumpkin mixture into cooked veggie mixture (and add more delicate veggies now, if you plan to, like zucchini and/or broccoli).

Bring to boiling; reduce heat and simmer, uncovered, about 10 minutes or until heated through, stirring frequently. Stir in cilantro before serving.

**My other changes: I also added a bit of cornstarch during the simmer to thicken it up just a tad. Served over grilled chicken and some gluten-free pasta, this makes a yummy creamy sauce loaded with veggies and flavor!
See More

Tips for 'Transitioning to a Restricted Diet

It's been almost two years since we've had Josiah off gluten, dairy and soy, and in that time, I have gone gluten-free for Malachi and even Josh (daddy) has tried eliminating gluten.  While it's much easier now, the transitions are always tough.  Having done it a few times, I've learned a few things, so here are my tips for making a transition to a restricted diet:

(1)  Add new foods BEFORE you start eliminating!  In every case, the transition has been easier when we delay making the full transition for a few weeks while we introduce new foods that fit the restricted diet so there are foods they are used to and enjoy before you eliminate things they've been used to.  For example, we introduced gluten-free Koala Crisp before we started taking away Cheerios, and we offered him gluten-free Pretzels before we took away his toast and sandwiches.  That way, when the gluten foods are eliminated, there are still lots of things he's already enjoying that don't have to go away!

(2)  Shift to eating more whole foods.  While processed foods are convenient, they aren't nearly as healthy as prepared whole foods anyway, and most processed foods won't be allowed on a restricted diet.  Almost EVERY processed food in the American diet has gluten, dairy or soy in it (if not all three).  It takes a bit more time and planning, but the food almost always tastes better anyway, is far more nutritious, and saves money -- and you'll be able to make "old favorites" in versions that fit your restricted diet.

(3) Focus on what you CAN eat, rather than on what you can't.  On a gluten/dairy/soy free diet, there is still a LOT you can eat, especially if you do some whole foods cooking.  Any meat, nuts, fruits and vegetables are safe and encouraged, and there are also still a lot of grains you can eat and cook with (rice, quinoa, lentils, potatoes, etc.)  Instead of making lists of off-limits foods, make menus of foods that fit your diet.  A snack list might include: apple slices, raisins, peanut butter with gluten-free pretzels or crackers, frozen blueberries, red peppers and hummus, pickles, carrot sticks with dipping sauce (Josiah loves the dip I make by adding curry powder, salt, pepper and lemon juice to some mayonnaise).

(4) Read labels meticulously AND be informed about all the names/ingredients that might include your restricted foods.  For example, sodium caesinate is found in lots of "dairy free" items (like whipped topping and coffee creamer) but is derived from milk and can be problematic for many people on a dairy-restricted diet.  "Spices" and "Natural Flavorings" often include dairy and/or gluten proteins.  When in doubt, keep it out :)  And you can always call the company to ask whether a specific product contains gluten or dairy (or whatever restricted ingredient you're dealing with).

(5) For some meals/dishes, you can find good substitutes that fit your dietary restrictions; for others, it's best to just alter the recipe or dish to something different.  For example, spaghetti is easy to do GFCFSF (gluten-free, dairy-free, soy-free) by making sure your pasta sauce doesn't have cheese or cream in it (we like Newman's Own sauces as they are all natural ingredients and only a couple have dairy in them) and serving it over a bed of gluten-free pasta (if you can eat corn, the corn-quinoa blend by Ancient Harvest is my favorite).  Sandwiches, on the other hand, just aren't the same with gluten-free breads, so we just do deli rolls instead -- on a slice of deli meat, spread mayo or hummus, add a couple leaves of spinach and a thin slice of tomato and roll it up :) 

(6)  Consider throwing out some of your "food rules" while you're making the transition.  For example, we normally wouldn't allow candy on a daily basis, but while we were transitioning Josiah off gluten, we let it slide and would let him have a small piece of candy after lunch if he had eaten well.  We already had fairly relaxed rules regarding table manners (our SPD kid still has trouble sitting still for a full meal and using his utensils consistently, but we do insist on politeness like excusing yourself if you burp, etc.) but we also added other "gimicky" things like carpet picnics, where we'd all eat together on a tablecloth on the floor of the living room, to make eating more fun while he was getting used to the new diet.  (Actually, we enjoyed carpet picnicking so much that we still do it fairly frequently!) 

(7)  Along the lines of number 6, find a treat you (or your child) enjoys that fits your restricted diet and reward yourself with it on difficult days.  When I eliminated gluten, I found some Udi's Double Chocolate Muffins that, while relatively unhealthy and expensive, taste SOOO yummy.  I keep a pack in my freezer for those days when I'm really bummed about having to avoid the cake at a baby shower or am craving a bagel and cream cheese :)  It's the pat on the back (or belly, as the case may be) that I need sometimes to keep pressing on!

Tuesday, November 30, 2010

Another Giveaway

Tis the Season :)  And Hartley is really in the spirit!  She's co-sponsoring another giveaway with Autism Spectrum Quarterly -- loads of awesome toys that are especially great for SPD and AS kids!  Here's the link to enter if you'd like!
Merry Christmas!

Sunday, November 21, 2010

Giveaway :)

One of my favorite blogs about SPD parenting, Hartley's Life with 3 Boys, has teamed up with Soft Clothing to do a huge holiday giveaway of sensory-friendly stuff!  I'm entering (hoping to get some Soft (TM) socks!) -- you can, too, if you'd like :)

Friday, November 19, 2010

While I'm Showing Pictures . . .

Josiah at 4 months (early 2005)

Josiah (5) and Malachi (4 months)
Stoneyridge Farm  --  October 2010

Thursday, November 18, 2010

How's Malachi?

Malachi at 3 months
(c) Sweetpea Memories Photography
 I've had a few people ask about Malachi's development, wondering whether we are seeing any signs of the SPD issues that Josiah has.  It is, of course, something I've wondered about myself -- will both my boys have sensory challenges?  Will I have one "typically developing child" and one with special needs?

Josiah was first tentatively diagnosed with sensory processing difficulties at about 16 months, when he began early intervention services because he was still gagging on anything he tried to eat.  Prior to that, I didn't have a clue there was anything wrong.  In hindsight, there were signs -- he hated the baby swing and the way it triggered his moro reflex; he startled really easily at everyday noises (blinds being raised, for example); while he was very cuddly and snuggly, he didn't like to have his head touched; and, obviously, there was the gagging on baby food that we first noticed at 6 months and persisted until he was nearly two.  Knowing what we know now, it all makes sense -- but I never would have put the pieces together then.

So far, Malachi seems more "normal" in the ways that Josiah struggled -- he quite likes the baby swing, doesn't seem to be oversensitive to touch in any specific place, and out of curiosity, I gave him some mashed banana today and he didn't gag on it (though he didn't seem to like it either -- made a sour face!).  Those all seem like good signs (except perhaps the sour face, which could be oversensitivity to tastes and/or textures) and I hope for the best. 

But the fact is that there is just no way to know yet.  He does startle at loud noises, though not to the point of crying like Josiah did, and who would make a sour face at a ripe banana?  Are those signs of SPD, or just Malachi's own personality quirks?  At first, Josiah's issues seemed easy to dismiss as personal preferences, too.  And more significantly, SPD manifests in such different ways in different people that looking at the same signs may not lead us anywhere anyway!

For now, I'm trying to balance blissful ignorance with informed practice.  I'm watching his overall development (he smiles and laughs, can roll at will, has excellent head control, is learning to use his hands and feet, follows objects with his eyes) and doing what I can to provide him with sensory rich experiences (giving him textured toys, exposure to various sounds, etc.)  But mostly, I'm just cuddling and kissing and loving on my baby. 

Malachi at 3 months
(c) Sweetpea Memories Photography
I'm singing to him like I did to Josiah, bouncing him on my knee, smiling at him, holding him, talking to him, adoring him and soaking in all his baby-ness while I can.  I know just how quickly this stage passes (he's already grown up so much at 5 months!) and I don't want to miss a thing.  In the grand scheme, we caught Josiah's sensory issues blessedly early (to be fair, they were pretty obvious considering he couldn't eat -- not really something you can miss!) and I'm confident that if we connect with and love on Malachi like we did Josiah, we'll catch any challenges he presents early, too. 

If we start to discover sensory issues with Malachi, we'll cross that bridge when it comes -- but for now, there are no labels, no need for explanations about his behavior, his preferences, what he can and can't do -- for now, he's just my baby, just like Josiah was at this age.  And that's exactly how I want it!

Bottom line: we're watching Malachi with our eyes on loving him, just like we did with Josiah, and we'll take whatever comes!

Sunday, November 14, 2010

It takes a village . . .

Any parent, particularly parents who have ever needed to advocate for their child, dealt with special needs or just wondered whether there might be something about their child that doctors or other caregivers have missed, has probably heard the adage that "you are the expert on your child -- nobody knows your child like you do."  This wisdom was discussed recently in a guest post on Hartley's Life with 3 Boys (one of my favorite blogs dealing with SPD parenting).  It's something I've heard and read often, and everytime I have the same reaction -- I have a bit of a love/hate relationship with this cliche.

On the one hand, it is empowering!  It encourages a "press on" attitude when your mommy instinct tells you something isn't right even when all the "experts" seem to think things are okay.  I'm a firm believer in the power of a mother's instincts on all things relating to one's own child -- while her logic may seem crazy to anyone around her, a mom listening to her gut about her child's experience of the world will always be a trail worth following and will lead to something productive.  (It seems to start in pregnancy, even -- according to this study, women's intuition correctly predicted baby's gener 70% of the time, better than chance and more accurate than any other old wives' tale!)  Following my own mother's intutition has certainly served me well so far in getting Josiah's SPD diagnosed and starting to learn ways to deal with it.

On the other hand, this idea is devastatingly scary!  I can't help but feel sorry for my child that nobody knows him any better than I do because there are so many days I just feel so clueless!  Even though I know SPD probably colors everything he does, I often find it hard to understand what he does and why he does it, let alone how to help him and how to shape his behavior. 

I know parenting feels clueless for a lot of parents -- it's just that I really felt "on top of it" for the most part until we discovered his SPD.  It's like the rug was pulled out from under me, like everything I thought I knew about parenting and about my own child had to be rethunk.  And while I recognize that, as his mother and one who lives with him and spends more time with him than anyone, I probably know more about him than anyone else on the planet, it just feels like I know nothing.  And it is overwhelming to think that it really is all up to me, that whatever there is to know about my child must largely be discovererd, understood, and articulated by me.  The enormity of that terrifies me, and on the days that everything seems to be going wrong and I can't seem to find any rhyme or reason behind what is going on, the thought that nobody else knows better than I do is nearly paralyzing!  All I can think is, "My poor dear child!  If nobody can understand him better than me, and I feel so completely clueless, the little guy is doomed to be misunderstood forever!"

In starting this blog (both in the writing of it and in the reading of other blogs by SPD moms) I'm learning to find the balance in this old adage.  I'm learning how to let go of the feeling that I am completely alone in figuring this all out, that there is a wealth of information on other families' experiences out there to glean insight from for our own situation.  And while it is still a lot of work, and a daunting task to have to sift through it all and study our own family through trial and error to know what works for us and what doesn't, there seems to be some hope and comfort in knowing that there is a community of others with wisdom to share.  Because I hear others struggling and forgiving themselves and persevering, I can give myself some grace for not knowing all the answers (and maybe this will eventually transfer to feeling less defensive when others seem to expect it anyway).  Because I read stories of success (despite struggle) in other families, I am inspired to live and write some stories of my own. 

We've always known that it takes a village to raise a child; I believe more and more that it also takes a village to raise a parent!  So today I am thankful for my village -- for the other moms I know in real-life, for our OT and her staff, for the community of SPD bloggers online and the websites devoted to raising awareness and increasing understanding, I am grateful that I can lean on the insight of others in becoming the expert on my children.

Friday, November 12, 2010

Party Planning

Josiah will be turning 6 in a couple weeks (sappy reflecting on that is sure to come in a future post) and I'm in the thick of planning for his birthday party.  Birthday party planning is a challenge no matter what your kids are like, even for people like me who adore planning parties.  Don't get me wrong, it's a blast to put everything together and watch his excitement (and impatience) grow :)  It's just that it's also a lot of work, and with a sensory seeker who doesn't modulate well, there are also unpopular decisions to be made.

It may not be as big a problem if his birthday were during the summer when sunny weather would provide us with more options, or if his sensory seeking didn't have him desiring highly active physical activities (think climbing, jumping, swinging, hanging, sliding, and spinning constantly -- even gift opening and eating are done on his feet so he can stay moving).  But it's not, and it does -- and so we search for affordable indoor active options every year.  And this is where the unpopular decisions sometimes come in.

The top two location requests we hear from Josiah regarding his birthday party are Jungle Playland and Chuck E. Cheese.  While both can be fun, they take a bit of extra planning to be successful (i.e. with only minor meltdowns during or afterwards) even on a "good" day, where Josiah's systems are working decently well AND the location isn't already overcrowded (we usually try to hit Chuck E. Cheese at 3:00 on a Thursday afternoon, for example).  Trying to hold a birthday party at either location, though, is sensory overload and a major meltdown waiting to happen.

Oh, we tried it once -- we had his 4th birthday party at Jungle Playland.  Silly me!  I hadn't been there on a busy late-fall (read: crappy weather) Saturday before, when every other child within two counties with a November birthday was also hosting a party (remember, we try to plan these places for non-peak times), so I really had little idea what I was getting myself into.  The volume level alone was enough to challenge even the most sensory-adjusted adult, let alone an excitable sensory-challenged 4-year-old birthday boy.  Add to it the cramped "party room" for cake and presents, the sugar (from said cake), and the constant tactile input from being bumped into by dozens of other party-going children in the play areas, and it equaled major meltdowns for the rest of the day.  The thought of forking over $100 for such a meltdown again makes me nauseaus --and that's just Jungle Playland.  Chuck E. Cheese, which is even larger, adds in the extra sound and visual stimulation of lighted arcade-style games and a dancing robotic mouse show, and pizza which is neither gluten- nor dairy-free, is an even worse idea.

And so we promise a near-future visit to each of those places, at a time we can better manage the sensory input they involve, and gently steer him towards more sensory-friendly locations for his birthday party.  Some days this works better than others, and it seems to be getting more difficult every year (a trend I expect will continue).  But at least for this year, the promise of a Lego themed pinata and a swim in the pool at a more calm location did the trick.  Birthday parties with a roomful of his preschool-early elementary aged friends can never be described as calm or incredibly sensory-friendly, but I'd rather he got the message that people are more imporant than things by encouraging the sensory overload to come from playtime with good friends, not a dancing mouse with arcade tokens and screaming children we don't know.  Unpopular as it may be at times, it really does work better for our birthday boy -- Chuck and the Jungle Animals will be there the following week for us to visit on a day that Josiah is nmore in control and can better enjoy them anyway.

So the invites are out, the pinata-making is planned, and the birthday countdown is in full swing.  I still need to find pinata stuffers (ideally some fun stuff that doesn't involve food allergens, dyes, and sugar overdoses), order the cake (specially made without gluten or dairy), charge the videocamera batteries and actually make the pinata, but those tasks are much more fun!

Note: Jungle Playland is actually an awesome facility, with great play areas that are awesome for Josiah's proprioceptive system, and if you're local I'd highly recommend a visit.  It's just the birthday-party-on-a-crowded-November-Saturday part that didn't work out so well for him!

Thursday, November 11, 2010

Funny How That Works . . .

In my last post I was talking about how some days are just THOSE days, where Josiah's system just isn't working well at all and creating all sorts of misbehavior, where I'd rather hide at home than go anywhere in public.  Those are the days I'm tempted to cancel any plans we've made (and sometimes actually do).  Of course it would work out that today would be one of those days -- just to see what I would do, perhaps?

Some close friends of ours will be moving to a new city a two-hour drive away in just a few weeks and had invited us over for dinner tonight.  Not only do I enjoy this couple as people, but they are foodies at heart and always making yummy new foods -- and are awesome at finding recipes that work for our difficult-to-feed gfcfsf diet issues.  All this to say, I was really looking forward to dinner!  And so it should have come as no surprise that Josiah would be having a rough day from the start.  This couple happens to be incredibly great with Josiah, bringing out great things in him and in us -- they are two of only a small handful of people in our lives who tell us they actually enjoy our son, as opposed to the more common responses indicating tolerance but not enjoyment -- so I didn't feel the need to call off the dinner, but I wasn't sure how it would all go, either.  As usual, I hoped for the best and braced for the worst.

Dinner turned out about as I expected -- the food was awesome, company was great, and Josiah was crazy.  Not just a tad crazy, but pretty off-the-charts crazy -- bouncing off the walls, doing "yoga" with mouthfuls of food, throwing balls around the room, and he couldn't seem to figure out how to make his mouth work to drink juice from a commuter cup.  As frustrating as days like this are (and believe me they are frustrating), I almost prefer the super-crazy days to the only-slightly-off-kilter days.  (Of course, I prefer the all-systems-go smoothly running days the best, but they tend to be fairly few and far between.)  On the only-a-bit-off kinds of days, it's easy to forget just how much Josiah really is dealing with, how much he is coping with and managing that we don't even see.  Because he seems "almost normal" it's easier to fall into the trap of expecting more from him than he is really capable of giving.  These super crazy nothing-seems-to-be-firing-right-at-all kinds of days are good reminders of just how pervasive his sensory issues really are. 

On evenings like tonight I can look at my child and see, without any question, how so many of his issues trace fully back to sensory processing challenges.  In these times when he is not managing his behavior well at all, when he is able to put so little of his usual intelligence, motivation and funny demeanor to work at covering the problems, when his challenges are right at the forefront for all to see, I am reminded so powerfully just how much grace he needs, and how much praise he deserves for keeping it together to the level that he does on most days.

Sometimes I wish his special needs were more visible, convincing myself that if people (including me) could actually see his challenges that they'd somehow be easier to deal with, less frustrating and embarassing.  I know that isn't true, that such a granted wish would come with a whole host of other issues to deal with, and I remind myself to be grateful for just what we have.  And as crazy as it might sound, days like today actually make that gratitude much easier to grasp.

So today, in my thankfulness campaign, I'm thankful for two things: (1) for having far less to deal with than many families do, and (2) for the "crazy days" like this that help keep things in perspective!

Sunday, November 7, 2010

Thankful for Friends (In the Face of Insecurities)

True Confession (to you and to myself):  I care too much about what other people think.  I know I shouldn't, and I'm working on finding my confidence independently from the input of others -- but I'm just not there yet.  I want people to like me, to like my kids, to think I'm worthwhile as a friend, a wife, a teacher, and a mother. Being a mother is really the first role I've had that I value enough to really WANT to be good at yet have more days feeling incompetent than feeling confident.  I know some of that comes from having a special needs child (I've written before about the feeling that the rug had been pulled from under me and how little I felt I knew once I learned about Josiah's SPD) but I believe I'd struggle with this some anyway.  And I carry that insecurity with me into most of the rest of the relationships in my life, especially my friendships.

Particularly on those days (weeks -- heck, the last few months especially) where Josiah is having an especially tough time managing his behavior, it's really hard for me to muster the courage to stay sociable.  On the one hand, my extroverted self really needs time interacting with other adults, having conversation and filling my energy tanks.  On the other hand, I'm terrified of all the issues I may have to deal with having Josiah around other people, ranging from the frustrations of handilng his squabbles with other kids to the embarassment of his strange behaviors.  I often spend the majority of the time with terribly split attention (focused more on monitoring my child than on any interaction with my friend) or feeling frustrated/embarassed that I wasn't monitoring him closely enough to prevent/avoid/deal with whatever challenge Josiah has presented.

There are plenty of days I avoid getting together with other people altogether, and many other days where I'm either really tempted to call off a social date, or actually do cancel it.  I've had enough bad experiences to fear how we will be received, or at least question how effectively I will handle it (pragmatically and/or emotionally) when the challenges arise in front of other people. 

Three separate times this week I've had something planned with friends or acquaintances and found myself nearly calling it off because of a frustration morning/day with Josiah.  All three times I talked myself into going anyway, and all three times I was glad I did.  No, those situations were not without issues -- there was misbehavior, and strange behavior, at every opportunity -- but I found less judgment and more grace than I expected.  And I found that I actually felt fairly good about myself, even though I know I make mistakes in parenting and am certain I made a few then, too.

Maybe I'm making progress where my insecurities are concerned, beginning to find my own confidence in who I am that isn't dependent on the approval of others.  Maybe I'm giving my friends and those around me the credit they really deserve for being more gracious and forgiving of me than I often am of myself.  Maybe I'm forcing myself to just "get over it" because I refuse to deprive my kids of life experiences because of my own hangups.  Most likely it's a combination of all those things coming together at the right time.

Oh, I'm sure there will still be those days.  Days that I feel so discouraged and defeated that I don't want to leave the house, and days that I will follow through on that discouragement and actually stay in.  Days that I question my competence as a mom, and doubt the hands of friendship others are offering me.  Days that I'd rather be comfortable (by avoiding my insecurities in public) than take some personal risks so my boys can experience life.  But I'm hoping that I'm moving in the right direction, that those days will be fewer and farther between.  And for today, I'm thankful for friends who let me be me and let my kids by who they are as well, and invite us back to spend time with again anyway :)

Wednesday, November 3, 2010

Thankful for Food (Sensory Diet and all!)

Today in my thankfulness campaign I am thankful for food :)  So many people in this world wonder where their next meal will come from and when it will get there; I'm thankful that I can come home and eat anytime I want.  With all our food issues, this might come as a surprise, but I really am glad I get to eat anything at all -- and truth be told, even our GFCFSF diet includes some pretty darn yummy foods. 

Food is admittedly a tricky issue around here.  Between a dairy/soy allergy, gluten intolerance, and sensory issues that make textures and flavors a HUGE part of a food's palatability, feeding Josiah has been quite the challenge.  And Malachi also seems to have a gluten sensitivity, so while I'm nursing, I've joined Josiah on his special foods diet.It all began when Josiah was only a few weeks old and we discovered he had an allergy to dairy products (even through breastmilk).  I eliminated obvious dairy products from my own diet and that stopped the projectile vomiting, but it was only once I started reading food labels to eliminate every trace of dairy proteins that he got rid of the goopy eyes and skin rashes.  And while he was nursing (and I was avoiding dairy), he did fine. 
When we began trying to introduce solid foods at about 6 months, he gagged on everything we tried.  At first I just thought he wasn't ready -- it's not all that uncommon, especially among babies with food allergies and no teeth (he didn't get one until he was 10 months), for 6 months to actually be too early for solids.  We tried about every two months and it was always the same.  When his first birthday rolled around, and he was two months beyond his first tooth, I started to wonder whether there might be something keeping him from eating.  At 14 months, we finally had him evaluated and discovered his SPD (though at the time we thought it only affected his eating, not everything else as well).
He started getting sensory therapy, where he conditioned his gag reflex to tolerate holding food in his mouth.  Then we had to teach him to chew, and eventually to swallow, rather than just pocket, the food he had chewed.  He continued to nurse for his nutrition, and finally, shortly before his third birthday, he was able to eat enough variety of foods that he could get adequate nutrition without nursing.  Certain textures were more successful than others, strong or salty flavors went over best as well.  The sensitivity to taste and textures continues to this day.  No matter the food, if the texture AND taste aren't just right, he won't eat it.
In trying new foods, we discovered that he had the same allergic reaction to soy as to dairy (again, not uncommon as the dairy and soy proteins are very similar in structure) so all soy-based foods were also off limits.  And as we discovered just how pervasive his sensory issues were, we decided to try the GFCF (gluten-free, caesin-free) diet that is often recommended for sensory processing disorder.  After all, he was already halfway there with no dairy, all we had to eliminate was gluten.  A few months, and a couple trials, later we decided the gluten was making a significant enough difference to keep it out of his diet permanently.

At first I just tried to substitute gluten free versions of foods we were already eating (pasta, for example) but recently I've done more GFCF-specific recipes, thanks to the help of this site and this site that both have some great ideas.  Last week it was corn dogs, and what a great success!  I actually used the Bob's Red Mill corn bread mix instead of going from scratch, so it was super easy -- and Josiah loved them!  "They taste just like the ones with gluten in them, mom!  These are great!  I love them!"  I know better than to think they'll get such rave reviews every time I make them, but for that night, dinner was a blast!  And they froze and reheated very well, for some instant lunch options . . . :)

Between the sensory issues and the allergies/intolerances to dairy/soy and gluten, I've had to completely re-learn how to grocery shop and cook.  And the learning curve has been steep!  I have quite a few flops for every success, and even the successes don't always stick -- anyone with an SPD kid can tell you that what worked yesterday isn't at all guaranteed to work today, so even when I did find a good recipe and could replicate it consistently, it didn't always have a consistenly positive reception.  So I've learned to revel in any successful meal without worrying about whether it will work again another time.
Perhaps it is because I'm having to be gluten-free myself while I'm nursing Malachi, or maybe it's just that I've adjusted a bit to the options that exist for gluten-free cooking, but I'm definitely starting to branch out to more creative ideas in the kicthen.  I'll keep you posted on other new things I try and how they work out :)

Tuesday, November 2, 2010

Adjusting to life with two . . . and a campaign of thankfulness

Malachi is 4.5 months old already -- he's so happy most of the time (now that I've given up gluten).  He loves to stand on his feet while we balance him, grabs for everything and puts EVERYthing in his mouth.  He's starting to experiment with his voice (oh, the pitch and decibals -- especially when Josiah joins in!)  And he has just found his feet, which has added a whole new challenge to diaper changes (any tips for getting him to let go of his feet long enough to change him?  LOL) 
I'm trying to soak up every blessed moment of this baby's life.  More than likely, he is my last and I don't want to miss a thing.  I'm constantly feeling like I'm NOT absorbing it like I want to -- I feel so busy with everything else in life that I don't feel like I get as much time to just sit and watch him and talk to him like I did when Josiah was a baby, and of course, that triggers the mommy guilt -- how do I give each of my boys the love and attention they deserve without making them sacrifice for the other? 
I'm discovering that the answer is: you don't!  They DO sacrifice for one another -- that's just part of having a sibling.  And I knew that even before we planned Malachi, and it's what I wanted -- it's a set of life lessons I really wanted for Josiah to learn.  I didn't realize how it would somehow feel unfair to Malachi that his babyhood doesn't feel as lavished with attention as Josiah's was.  I'm not worried about whether I love them equally -- there's no question in my own heart that I do -- my concern is with whether THEY know that.  Will Malachi feel less loved because he hasn't gotten as much direct attention as Josiah did when he was tiny?  Will Josiah feel less loved because he sees Malachi get unconditional love while Josiah spends a decent part of his day being corrected for misbehavior?  Is there really a way to prevent any of these things anyway?
My consistent prayer is that God will fill in the gaps where my parenting falls short.  Where I'm unable to express the love they need in the ways they need it and at just the right times, I'm praying God will wrap His love around them instead.  Where I get frustrated and lose control and say something stupid or make a mistake in how I deal with my kids or my husband, I pray God will cover those mistakes and fix what went wrong.  I once heard an analogy about playing the piano -- God is, of course, the ultimate pianist, and even if I were incredibly talented (though most days I'm just plucking out a note here and there to try to string a song together), God tells me to keep playing and then comes alongside to fill in the missing notes and make a beautiful song.  Lord, make my family a beautiful song today!
In a countdown to Thanksgiving, I'll post a new thing each day that I am thankful for.  Yesterday, I was thankful for a warm place to live and enough money to pay the heating bill.  I hate being cold and love to sit by a warm heater on cold mornings.  Today I am thankful for the privilege to vote, to have a say in decisions made by my government and to protect the freedoms I cherish.  What are you thankful for?

Monday, November 1, 2010

We now return to our "normal" programming . . .

I had a lot of fun finding and posting facts for Sensory Processing Awareness Month last month.  So many of the stories from Hartley's Life with 3 Boys really resonated with me (if you haven't read them, you should check them out!) and it's so nice to know that we are not alone and that our story is like so many others.  And I even won a prize on Lucas's Journey with Sensory Processing Disorder -- she was doing 30 Giveaways in 30 Days and I won this!  I'll let you know how it helps when it arrives!

Now I'm excited to get back to posting my thoughts on the other parts of my life :) 

Saturday, October 30, 2010

30 SPD Facts in 30 Days -- Fact #30

For today's fact, I asked a few fellow SPD-mom bloggers to submit their ideas for what they wish the world knew about Sensory Processing Disorder.  If you're another loved one of a child with SPD, please feel free to add your own ideas to the comments section -- I'd love to hear your thoughts have your input added to the conversation as we try to raise awareness for this disorder that affects our lives.  Enjoy!

  *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *

I wish the world could understand that it is not "just a behavior problem".  My son's actions and reactions often come from something real and it's called SPD! 

The first thing that popped into my head for something that parents of SPD wish the world knew is I wish that people knew that my kids are really good kids and they try their hardest.  I also wish the world knew that kids do not come out of cookie cutters, they are each unique! 
        ~ Joyce Herrmann

I think it's so interesting that SPD is more prevalent in the gifted population. Every SPD mom I've talked to mentions that her child is really smart in one way or another. I often wondered what the connection is...I guess being more "sensitive" might go hand-in-hand with being more perceptive or intuitive. Here's more info from the SPD Foundation on this subject:     To me, this is a little ray of's sort of like an "upside" to SPD.  
        ~Rebecca Whitlock,

  *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *

Thanks for joining me as I've presented some information on Sensory Processing Disorder.  November will bring me back to my regular blogging, so please stick around :)

Friday, October 29, 2010

30 SPD Facts in 30 Days -- Fact #29

In addition to Occupational Therapy (OT) and a home sensory diet, many other interventions exist to treat those with Sensory Processing Disorder, including auditory stimulation therapys, hippotherapy (using horses), nutritional therapy (involving elimination of certain foods and/or supplementation of enzymes, etc.), osteopathic manipulation (cranio sacral chiropractic adjustments) and integrated therapy approaches using a variety of techiniques simultaneous or in parallel.  For more details on these intervention options, check out the Sensory Nation website at
Our OT is amazing and using a variety of these interventions in Josiah's therapy. 
(1) Auditory Stimulation -- she maintains a library of modulated music CDs to play during therapy sessions and to check out for a home-based listening therapy program.  We invested in expensive specialized headphones for Josiah's listening therapy and have used a few different CDs to provide added auditory stimulation to Josiah's home sensory diet.  We'd probably have more success with this if we were more consistent in using it :(  This is a good reminder to get back into the swing of his "special music" on a regular basis (15+ minutes, twice a day as recommended). 
(2) Hippotherapy -- her OT office is actually on her home property where she keeps her small herd of horses, some of whom are working therapy horses.  On dozens of occasions, Josiah has gotten to ride a horse as part of his therapy.  Not only does it provide good vestibular and proprioceptive input, it also provides lessons in social skills (gentle touches on the horse, greeting them, etc.)  Many times, we've even combined auditory stimulation and hippotherapy by putting headphones on Josiah while he rides (our OT has a modified helmet that has space cut out for the specialized headphones for just this purpose!).
(3) Nutritional Therapy -- Josiah has been allergic to dairy and soy since birth (I even had to cut all traces of dairy from my own diet while I was nursing him), so it wasn't a huge stretch to go on the GFCF (gluten-free caesine-free) diet that is often recommended for autism-spectrum and sensory processing disorders.  So about a year and a half ago, I transitioned Josiah off of gluten.  After a couple months, I wasn't sure whether it was making much of a difference, so I challenged it by offering him gluten again for a few days.  On the first day of the challenge I didn't notice much change, so I thought we'd just go back to giving him gluten, but by the third day of the challenge, he was driving us all CRAZY!  Even without the caesine, the gluten-protein acts as a neurotoxin in Josiah's system, making his sensory issues even more extreme -- the improvement was so gradual when we first eliminated gluten that we weren't sure it was helping, but the challenge proved that it really was making a difference, so nearly two years later, Josiah is still GFCFSF (gluten, caesine, and soy free) and feeding him can be a challenge, especially outside the house (more on that in a future post).
(4) Osteopathic manipulations -- We've tried this through our family chiropractor, and sometimes it seems to have good results.  Come to think of it, we haven't taken Josiah to get adjusted since we had Malachi; perhaps a few adjustments would help reduce some of the "regression" we've seen since Malachi joined the family.  Note to self: call the chiropractor :)
Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Thursday, October 28, 2010

30 SPD Facts in 30 Days -- Fact #28

Sensory Diets:   Children with SPD need strategic activities sprinkled throughout the day to help maintain the optimum arousal level for good behavior and successful development.   Many sensory children will experience both extremes of energy (overstimulated or listless) throughout the day and have trouble maintaining the suitable arousal levels necessary to perform age-appropriate tasks.(1)  One of the most effective treatments for Sensory Processing Disorders is a sensory diet.(2)   A sensory diet is an activity plan designed for an individual child with SPD to help modulate his “engine” level.(1) 
For example, to calm an overstimulated child, you could wrap him in a heavy blanket, feed him crunchy foods or suck yogurt through a straw, have him roll or knead play-dough, or push a heavy box around the room.  To energize, have the child jump on a trampoline, spin in circles, take a shower or eat chewy foods.  Many children needs frequent sensory breaks during school for these kinds of sensory activities that help organize their bodies and let them succeed.
It is important to consult with your child's OT before introducing a new activity or developing a sensory diet for your child!

Read more at (1) Suite101: How to Support Kids with SPD: Sensory Diet Ideas to Keep Energy Levels Just Right   and (2)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Wednesday, October 27, 2010

30 SPD Facts in 30 Days -- Fact #27

The goal of Occupational Therapy [to treat Sensory Processing Disorder] is to foster appropriate responses to sensation in an active, meaningful, and fun way so the child is able to behave in a more functional manner. Over time, the appropriate responses generalize to the environment beyond the clinic including home, school, and the larger community. Effective occupational therapy thus enables children with SPD to take part in the normal activities of childhood, such as playing with friends, enjoying school, eating, dressing, and sleeping.  (From SPD Foundation's website)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Tuesday, October 26, 2010

30 SPD Facts in 30 Days -- Fact #26

Once children with Sensory Processing Disorder have been accurately diagnosed, they benefit from a treatment program of occupational therapy (OT) with a sensory integration (SI) approach.   Occupational therapy with a sensory integration approach typically takes place in a sensory-rich environment sometimes called the "OT gym." During OT sessions, the therapist guides the child through fun activities that are subtly structured so the child is constantly challenged but always successful. (From SPD Foundation's website)
Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Monday, October 25, 2010

30 SPD Facts in 30 Days -- Fact #25

Early diagnosis improves family life. The stress on the families living with sensational children can be devastating. The understanding that comes with diagnosis helps parents avoid such common traps as assigning blame to each other for their child's behavior or disagreeing over discipline. A diagnosis also gives parents an explanation they can use to address the criticism and disapproval that is often directed at them as well as their child.
(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)
Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Sunday, October 24, 2010

30 SPD Facts in 30 Days -- Fact #24

Early diagnosis provides correct labeling for unusual behaviors. Because of their atypical behaviors, children with SPD often attract negative labels such as "aggressive," "withdrawn," "weird," "hyper," "out of it," and others from peers and adults. With early diagnosis, these behaviors get labeled early for what they really are–symptoms of an underlying neurological disorder. Undeserved and undesirable stereotyping, punishment, and other consequences are minimized or avoided.
(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)

We were fortunate to have gotten a particularly early diagnosis (as early as 16 months), and while it has certainly helped some, it certainly doesn't avoid these issues.  That would require more awareness and understanding on the part of the other adults and peers in his life, and that has garnered only mixed success.  With many other neurological disorders, there are physical signs and symptoms or at least an understandable trigger (like with post-traumatic stress disorder, for example).  One of the great challenges with SPD (and Autism-spectrum disorders) is that the kids look, and in the case of SPD even sound, really normal, even advanced intellectually.  So even when you identify them as having SPD, the skeptics in the crowd will still believe it's just bad parenting.  Until SPD is more well-understood and widely recognized, the mislabeling will continue and so will the struggles that go with them, for the kids and their loved ones.
Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Saturday, October 23, 2010

30 SPD Facts in 30 Days -- Fact #23

Early diagnosis can prevent secondary problems from developing. Children who perceive themselves as "failing" at activities that most children perform effortlessly are at risk for other problems such as social difficulties, academic under-achievement, acting-out behaviors, and/or low self-esteem and self-confidence. When children are diagnosed and treated at younger ages, they are more likely to escape this defeating cycle.  ( from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Friday, October 22, 2010

30 SPD Facts in 30 Days -- Fact #22

Early diagnosis increases the chances of successful intervention. The immature brains of younger children are more "plastic," which enables them to change more easily. This makes intervention more effective for them. Older children still benefit but the benefits may take longer to achieve and may be based on cultivating coping skills rather than on modifying the brain, as early intervention is believed to do.
(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)
Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Thursday, October 21, 2010

30 SPD Facts in 30 Days -- Fact #21

Early diagnosis leads to early intervention. The sooner an accurate diagnosis is made, the sooner intervention can begin. Many children and their families suffer needlessly for years because of sensory issues that could have been addressed if a sound, professional evaluation had determined that Sensory Processing Disorder was present and treatment had begun sooner. 
(from Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR)
Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Wednesday, October 20, 2010

30 SPD Facts in 30 Days -- Fact #20

Diagnosis of Sensory Processing Disorder usually begins with screening, which is basically a professional search for red flags that indicate enough differences in development to warrant a more comprehensive assessment.  If differences exist that are sufficient to warrant further assessment, evaluation will follow.  In addition to standardized assessment, all comprehensive OT evaluations include detailed observations in a clinical setting to assess real-life movement and reactivity to stimulation. Most also include detailed interviews with parents and teachers.  (From SPD Foundation's website)

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Tuesday, October 19, 2010

30 SPD Facts in 30 Days -- Fact #19

The causes of SPD are among the subjects that researchers at Sensory Processing Disorder Foundation and their collaborators elsewhere have been studying. Preliminary research suggests that SPD is often inherited. If so, the causes of SPD are coded into the child's genetic material. Prenatal and birth complications have also been implicated, and environmental factors may be involved.
Of course, as with any developmental and/or behavioral disorder, the causes of SPD are likely to be the result of factors that are both genetic and environmental. Only with more research will it be possible to identify the role of each.   (From SPD Foundation's website)
Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Monday, October 18, 2010

30 SPD Facts in 30 Days -- Fact #18

Most children with Sensory Processing Disorder (SPD) are just as intelligent as their peers. Many are intellectually gifted. Their brains are simply wired differently.  (From SPD Foundation's website)

I know most parents think their kid is exceptional in some way or another, so I really wish you could meet Josiah.  He really is exceptional!  He is SOOO articulate and curious, and he makes such amazing intellectual connections between things and figures things out so quickly and effortlessly.  His vocabulary rivals some middle schoolers' and he's not even six yet!  And if he has heard a story even one time (especially if it was read dramatically) he can recite nearly the entire thing back (give him two or three repititions of the same story and he can recite the whole thing complete with emotion!) 

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Sunday, October 17, 2010

30 SPD Facts in 30 Days -- Fact #17

Children with Sensory Processing Disorder often have problems with motor skills and other abilities needed for school success and childhood accomplishments. As a result, they often become socially isolated and suffer from low self-esteem and other social/emotional issues.

These difficulties put children with SPD at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, poor self-concept, academic failure, and being labeled clumsy, uncooperative, belligerent, disruptive, or "out of control." Anxiety, depression, aggression, or other behavior problems can follow. Parents may be blamed for their children's behavior by people who are unaware of the child's "hidden handicap."   (From SPD Foundation's website)

These are the issues that scare me!  We're working really hard to prevent them, and I know there is more we will need to do (and start doing now).  So far, he seems to be doing well with  most of this -- though he is not yet 6 and would only be in kindergarten this year. 

One of the things we're doing (that we had planned to do even before we found out about Josiah's sensory issues) is to homeschool him.  We did try putting him in preschool at age 4 because he is such an extrovert and loves to be around people -- but after several months, it just wasn't working for him.  He started coming home worried that the other kids didn't like him and started to resist going some of the time.  And we noticed that the "better" he was at school, the "worse" he was at home.  It just took too much of his energy to keep it together for those few hours and he would completely meltdown at home.  The staff at the preschool were amazing and tried really hard to be helpful, but school just isn't an environment that he can succeed in right now. 

In my terrified moments, I've considered putting him into kindergarten, but then I remember what a miserable nightmare it would be for him -- intellectually, he is ahead of the curve, but his motor skills (large motor for recess games and ball playing and small motor for things like cutting and especially writing and drawing) he's a little behind -- which means he would spend half his time bored and the other half frustrated, and that just sounds like a recipe for disaster, not to mention all the time he'd have to spend trying to sit still when his body really wants him to stay on the move.  Even if we could get him to a place where he'd manage all right at school, I think it would be at the expense of having a happy child at home, and we're just not willing to do that right now.  Perhaps at some point in the future we'll try school, but for now homeschooling is best for all of us. 

Our area has tons of homeschoolers, which means tons of support and lots of social opportunities, like Wednesday Park Play Day, where a large group of homeschooled families meet at a local park (a different one each week) to let the kids play.  He gets the benefit if building relationships with the same group of kids each week (a variety of age groups, too) and has a great time getting to run and climb while I get to chat with other homeschooling moms -- great setup!

I'm also trying to talk with him more about what his body is telling him and how he is (and/or can be) handling that.  Not only will this teach him more self-awareness and relevant coping skills, it will help remind us that he's dealing with sensory issues in those moments we forget and want to just treat him like a normal kid when he's driving us crazy!  Right now I'm working with our OT to write a few "social stories" that help him understand and deal with some of the key issues that are frustrating us all right now -- more on that in future posts I hope.

And, of course, I'm trying to educate the people around us so they will start to understand the challenges he faces.  I sometimes wish his special needs were more obvious, that he didn't look so normal to outside observers so that we would all face less scrutiny and judgment (can I at least plaster a huge bumper sticker on all his clothes?!)  I know that wouldn't solve everything either, and I'm grateful that he really is so adorable and articulate and fun (most of the time LOL).  And do lots of praying for grace and wisdom and joy -- and we're finding more and more of that all the time!

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Saturday, October 16, 2010

30 SPD Facts in 30 Days -- Fact #16

Another analogy for what it's like to live with Sensory Processing Disorder, from Michelle at   She uses this description when she teaches seminars on SPD:

Imagine if:
  You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.
  You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair and you fell off 3 times during this training.
  Your clothes felt like they were made of fiberglass.
  You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
  Every time you tried to write with your pencil, it broke because you pushed too hard.
  The different smells in this room made you utterly nauseous.
  The humming of the lights sounded louder than my voice.
  You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.
  The lights are so bright you have to squint, then you get a pounding headache half way through the presentation
  Every time someone touches you, it feels like they are rubbing sandpaper on your skin.
  You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.
  People's whispers sounded like they were yelling.
  The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
  You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
  You had to pull the car over 3 times on the ride here because the motion makes you sick.

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Friday, October 15, 2010

30 SPD Facts in 30 Days -- Fact #15

Stanley Greenspan, the author of "The Challenging Child " (1995) has an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input. He describes it this way:

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

Don't forget to stop by Lucas's Journey with SPD to enter the 30 Giveaways in 30 Days and also check out  Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Thursday, October 14, 2010

30 SPD Facts in 30 Days -- Fact #14

While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life. 

I think everybody probably has some sensory issues -- it's just that they are more pervasive in some than in others. For most of us, we have one or two senses that are bothersome some of the time -- for SPD kids like Josiah, all of his senses (or nearly all of them anyway) are out of whack nearly all the time. When it's less pervasive, it is simply less disruptive to your daily life.  It's more socially acceptable to be offended at smells than to be unable to sit still because your vestibular system is driving you crazy, or to make loud noises because you need more auditory input, or to crash into anything and everything so you can get some more input in your muslcles and joints, or to do all of the above at the same time nearly all day long.

Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Wednesday, October 13, 2010

30 SPD Facts in 30 Days -- Fact #13

Sensory Processing Disorder can also affect our interoceptive senses, or our body’s ability to interpret and regulate normal functions like temperature, respiration, heart rate, arousal (sleep), mood, elimination, hunger and thirst.

This is definitely true for Josiah!  I can remember several times as a baby that he would have very high unexplained fevers -- he'd have no other symptoms aside from a fever of 104.  He was in a good mood, acting normally, even screening normally on blood and urine tests -- just running hot :)  As a toddler and preschooler, he would often wake up in the middle of the night drenched in sweat from his body cooling down at night and then overcompensating to heat himself back up -- by the time his body finally realized he was warm, he was already too hot and then would perspire like crazy to cool down, only to start the cycle over again.  We seem to have finally figured out just the right combination of pajamas, weighted blanket and room temp and havne't had much trouble with this lately.  That doesn't mean he never sweats at night (he does sometimes, though not as badly) nor does it mean he sleeps through the night (he doesn't, ever) but at least it isn't the overheated sweating that is waking him.

We have yet to figure out a good solution to his night waking.  We've tried dozens of things: letting him sleep in our bed, not letting him sleep in our bed, feeding him protein before bed, feeding him carbs before bed, not feeding him before bed, staying with him while he falls asleep, not staying with him while he falls asleep, lights on, lights off, lights dim, no blankets, heavy blankets, even melatonin.  While we have had some success with some of the strategies keeping him asleep longer before he wakes, he still does wake up every night.  He'll be six at the end of November and I can count on my hands the number of nights in his life that he slept completely through.

I've posted before about potty training issues so suffice it to say here that he has certainly struggled with that, too!  We're getting closer and closer all the time, but I still wouldn't consider him fully potty trained, and he's definitely not dry at night.  All in good time, I suppose.

Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.

Tuesday, October 12, 2010

30 SPD Facts in 30 Days -- Fact #12

What are some signs of Sensory Processing Disorder?

Signs Of Visual  Dysfunction (with no physical vision problem):
Hypersensitive:  Irritated by sunlight or bright lights; easily distracted by visual stimuli; avoids eye contact; may become over aroused in brightly colored rooms.

Hyposensitive:  Difficulty controlling eye movements and tracking objects; mixes up similar letters; focuses on little details in a picture and misses the whole; looses his place frequently when reading or copying from the blackboard.

Remember that inconsistency is a hallmark of this disorder, so you may find yourself/your child being hypersensitive one day and hyposensitive another day and on yet another day seem completely normal.  For a more complete checklist of symptoms, click here.

Like smell, Josiah's vision system seems to work well enough to also not need much special consideration on a daily basis.  We did have him evaluated by a vision specialist (not just an optometrist) and while he was a tad bit behind in a few areas, it wasn't worrisome or anything that required correction.  He does tend to become overwhelmed in rooms that are busy or cluttered, and he mixes up similar letters (though I think that is pretty age appropriate right now).  And if there is much clutter around, he can't seem to find anything he is looking for (especially if I'm the one who asked for it LOL) but aside from reducing clutter, there isn't much we need to do for him visually.  Yay for that!
Don't forget to stop by Hartley's Life with 3 Boys to read 30 Stories in 30 Days, guest blogs from 30 different families about their experiences with an SPD child.