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!  http://www.hartleysboys.com/p/win-free-toys-from-asq-and-hlw3b.html
Merry Christmas!

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 :)

While I'm Showing Pictures . . .

Josiah at 4 months (early 2005)

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

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.

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!

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!

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 :)

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 :)

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?

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 :)