Two Steps Forward, One Step Back

  The one thing about SPD and childhood anxiety that I can count on is that just when I feel like things are settling down and we've found a good routine, something changes.

  Take Tuesday for instance.  A woke up and was just plain Angry.  Her fists were clenched at her sides, she had a huge frown on her face, she yelled at everyone about everything, she argued about nothing, and I couldn't make her happy.  Later she told me she was angry and didn't know why.

  I called her counselor to see if we could get her in this week.  We made an  appointment for the next day.  By Tuesday afternoon, she was doing better.

  Wednesday morning we woke up and things were back to normal.  Which worked well, because her appointment ended up getting canceled.

  Then there was yesterday morning.  She was back to being angry.

  She was arguing and frustrated and just plain, Angry.  I ended up carrying her (yes, she's 8) from the kitchen table to her room so she could settle down.

  She was quiet for a while and I had to make the tough decision to either go in to check on her or wait until she came out.  We had places to be but I knew *bothering* her could be dangerous.

  I decided to go in.  She was curled up in her sleeping bag, which was on the floor, and partially under her bed.

  My heart sank.

  I knew she was miserable.

  It was back to the drawing board.  I called the counselor's office and made sure we got things taken care of so we could get her in and got an appointment for the next day.  I called her psychiatrist to see if we could get her in earlier (and we did...a whole week!) and I started brainstorming.

  Her SPD has been getting more intense...her chairs don't stay on 4 legs (they're rarely even on 2), she's constantly spinning while she walks, jumping up and down while she watches TV, the amount of clothes she can wear is dwindling (not because she's outgrowing them, but because they itch/hurt/tickle/etc), and she is becoming very rigid in her need to keep to routine/structure.

  I have noticed a few patterns to her behaviors and it looks like we may need to make some changes to our home school calendar.  It also looks like her meds may need to be tweaked.

  Whew.  At least I feel like we're catching it close to the beginning, instead of being sidelined for a month before realizing there's something more to her behavior than being tired/sick/etc.

  I suppose I *am* getting better at this.

She's so Fancy. We already know.

  Anyone who knows A knows that she Loves all things fancy and frilly.  Those people have also begun to learn that A loves the glittery, sparkly, lacy things from a distance.

  On the surface A is the kid one could buy all the cutesy, girly things for.  The inside, however, is another story.
  You see, A loves the idea of being fancy.  She loves clip-on earrings, high heels, hair accessories, and clothes.  The unfortunate thing is that despite how much she loves all that glitters, she just can't handle wearing it.

  Her hair is always in a ponytail because she's uncomfortable with her hair done any other way (including a low ponytail)--not because I'm a lazy mom who couldn't care less about appearances.

  Her hair has little fly-aways because of her beautiful natural curl, but she doesn't wear clippies.  She has a drawer full of colorful hair bows and cute clips, but she doesn't wear them.  Not because they've been forgotten, but because clippies pull and dig into her scalp and hair bows can be itchy, heavy, and get caught in her hair.

  Her closet is full of pretty dresses and cute sweaters, but she always picks the home-made skirts and shirts (sometimes--ok, fine, frequently--the shirts don't match because I have a hard time keeping up with the laundry she deems acceptable to wear).

  She wears socks that are yanked clear up to her knees because she finally found a brand and style she can handle (but knee socks don't come in cute, frilly, lacy styles)--not because they're the current fashion trend.

  She has a 100 pairs of shoes that she loves, but just can't physically wear.  She wears snow boots in the summer and sandals with socks in the fall (she'd wear those year-round, too, but I stopped allowing that a year or so ago).

  She loves to go clothes shopping, but rarely wears anything that is bought brand new.  She likes the feel of things that have already been washed and worn.  Including shoes.  *If* we do get her new shoes (I can't remember the last time we bought her new shoes...all the ones she currently has are either hand-me-downs or consignment/yard sale buys), we buy them a size too big because she can't stand them the slightest bit snug.

  Her eyes light up when she sees shirts with sequins, dresses with some of that can-can material, even dress-up costumes with glitter and sheer sleeves.  But shortly after putting it on, she's frantically tugging it off because it hurts.  There's either a seam, tag, or thread that tickles/pokes/hurts/itches/irritates.

  She loves fancy bedding, but despite the fact that she has some nice sheets, her mattress is currently bare.  Some sheets are too cold, certain blankets aren't soft enough, and the list goes on.

  The silver lining?  She's learning what she likes, what she can handle, why she can't stand some things, and she's developing her own style.

  Perhaps I will design clothes for kiddos like her--tag less, uber soft, affordable, but super cute, girly and fancy....

Routine or Bust!

  In my blog post yesterday, I mentioned that A had been clinging to our routine lately.
  Today I wanted to share a shining example of how drastic things got.
  With all the holidays we've had lots of time at home together.  The Hubby, A, Bug, and me.  We had a few lazy mornings (your typical stay-in-your-pajamas-all-day-and-eat-breakfast-at-11 kind of day).
  By the second day (not in a row--we aren't heathens ;) ) I found myself thinking "this is nice!  We don't have nearly enough of these days in our lives."
  My peaceful, lazy morning quickly came to a screeching halt.
  You see, the kids watch a show when they first get up.  They also have snack on the couch.  That particular morning the kids had eaten saltines.  I needed to go into town, and as I was getting ready to leave, A asked for seconds of snack.  I knew she had eaten plenty--but had never had "official seconds."
  She was adamant that she was starving, so I asked how many crackers she had.
  Twelve.  She'd had 12.  Now that might not seem like much, but I always give the kids 5 to start with and 5 for seconds (annnnnd there's a reason for that, too....but that's another story).  She had already had more than that and wanted seconds?!
  I noted that it was 11 a.m., so I said "If you're that hungry, go ahead and eat lunch."
  Looking back I see what a ridiculous offer that was to make.  Hindsight and all...
  "I can't have lunch! I haven't had breakfast yet!"  was A's not-so-calm response.
  Breakfast?  It's 11 o'clock and you've been eating saltines All morning...?
  I tried to reason with her, but soon discovered that it was useless.  Logic and reason are among the first things to go when she starts her downward spiral.
  I finally told her she was welcome to have breakfast.  When I left, both of my adorable children were eating breakfast basically at noon.
 
  I got home about two hours later, during rest time, and A came running up to me, crying.
  "Daddy won't let me eat lunch!" she sobbed.
  He was dumbfounded.
  "I thought they were eating lunch when you left" was his (logical) response.

  Nope.  It certainly wasn't as *simple* as that--so she sat down to lunch at 2 in the afternoon.

  Take away from this:  we don't skip meals in this house.  Ever.  Even if we wake up at noon, there's a certain order to things: breakfast, lunch, snack, dinner.

  Whew.  Lesson learned.

Logic In My House 101

  I found this gem in a journal entry of mine from about 5 months ago.
  Since the last post was a bit heavy, I thought I'd follow it up with a funny story.
  A little history before you read: A had been struggling with her SPD, which led to this (something I can laugh at now...)

"This morning we were getting ready for Church and A wore a new dress.  She tried it on without an undershirt first.  Then she put a t-shirt under it.  That worked, but it was a VERY delicate situation.  
Apparently I messed that up when I touched the tag. It took her 10 minutes to settle down after completely melting down.  When I fixed her hair, she *gently* reminded me to be careful of the tag.

So I was very careful.  And when we were done (we made it without a complete meltdown) I said “look, I didn’t even touch the tag.”

Ya know what she said?????

“What tag?”

What the….?

What just happened there?????  

I know, “WHAT TAG?!”  The blasted thing wasn’t touching her because she had an undershirt on to serve as a buffer.

Oh for crying out loud."

  And that's how logic works in my household...

OT Evaluation, oh the emotions!

  So today was the big day. A had her evaluation with an occupational therapist. It went really well, but not as I expected.
  I was ready to schedule at least 3 months of OT, get some answers, feel validated and have a "diagnosis" (SPD is still not a diagnosis, but they're working on getting it recognized as such).

  As it was I got answers...and that was "all." The OT (Kathy) was great. I feel like she did her job well, even though the outcome wasn't what I initially wanted.

  Basically A does have some sensory sensitivities. Kathy showed me how to do the Wilbarger skin brushing technique with A. I will take 3 minutes or so (perhaps longer since Bug decided he wants me to do it with him too!) to use a special brush and brush the skin on A's arms, hands, back, legs and feet. I will follow that by doing joint compressions on her wrists, elbows, shoulders, ankles, knees and hips. Essentially this will help desensitize her skin and her over responsivity.
  We should notice that A's tolerance for tags, shoes, socks and having her hair combed will be much greater. Yay!
  Another thing that has been driving me and my husband crazy is A's inability to keep her chair still at the dinner table. She tips it on its side legs constantly and is up and down and all over the place in it.    Kathy pointed out that when someone who is sensitive to where her body is in space isn't able to put her feet flat on a firm surface while sitting, it's really very unsettling for her.
  The solution: a step/foot stool to rest her feet on! So simple and yet so wonderful!
  Kathy even addressed A's picking tendencies. Of course it makes sense that they're sensory related! 
  The places A picks at are the nape of her neck and her upper arms. Those are places that are frequently tickled (which is a negative sensation to A) by little hairs, shirt sleeves, or even collars.  Hopefully the Wilbarger brushing will help that too.
  We've already come a long way on our own, and I am very confident in saying that A would definitely qualify for therapy if we hadn't parented her the way we have. However, since we've covered so much ground over the past few years, Kathy was pretty sure that A more than likely won't qualify.
  At first I was crushed! There are enough people in my life right now who are wonderful people, but who just don't see the SPD. They either don't see the meltdowns or they think firmer parenting on my end would help. I have found myself feeling a bit isolated lately because I know SPD is right! I feel the need to make everyone see it so they can be on my side.
  I started thinking about getting a second opinion.
  Then reality started to set it.
  First of all this evaluation wasn't a ton of fun for A. Sure she got to play and loved that, but there was also work involved. There were questions to be answered and things to trace, draw and cut. Why would I want to make her go through that again?
  Then there's the fact that no matter where we go, the tests will all be the same and will be scored the same way.
  Then I started questioning my true motive. Why did I desperately want my child to be in therapy?    
  Apart from the fact that I truly thought she'd benefit from it, I was hopeful that once I had a doctor and an occupational therapist supporting me those who were doubtful would see that it's not all in my head. I would feel validated.
  Unfortunately the tests didn't show what I've gone through over the past 5 years with A. If she actually tested and qualified for OT, though, it would prove that what I've endured and slogged through was real. It would show that it wasn't bad parenting or a difficult kid or a mommy who couldn't handle stress, after all.
  How selfish is that?!
  So I changed my point of view. I am a mommy. My job is doing what's best for my family and right now that means doing what's best for A.   Is pushing for another evaluation (especially one that would probably end up the same way) going to benefit her? No. It's not fair to A.
  When I listen to reason I can see that I did get validation--Kathy acknowledged that there are sensory issues and gave me some strategies to deal with them. She gave me her personal cell phone number and e-mail address so I can talk to her when/if something else crops up.
  If there are people who don't buy into it, they wouldn't have "bought" it even if A needed OT and had a diagnosis.
  And, A got the right amount of help she needed. We'll do the skin brushing and joint compressions. We'll get her a step stool. I'll keep reading and learning. We'll make special adjustments when needed.
  We're in a good place. I won't mess with that (and yes, I will definitely be keeping this post handy to remind myself of my non-meddling clause I just established).

  ~Alexis

Welcome to the world of SPD

  So a LOT of things have been happening lately.  Unfortunately my computer has been down, thankfully I just got it back.  It will probably take several posts to catch you all up...but I love to write, so that shouldn't be a problem.
  I'm going to take you back about three weeks ago. 
  I was struggling to understand A (which was pretty obvious in my last post).
  I had explored so many different possible diagnoses for her, and had yet to find anything that truly fit.  I was beginning to question whether there was something truly wrong.  Perhaps her meltdowns are within the realm of typical.  Maybe I'm just too high strung and need to chill...
  Then one night I was researching and digging because my gut kept telling me that A's behaviors are Not normal and that there's something else going on with her.
  Somehow I stumbled on a website for Sensory Processing Disorder (SPD).  I was blown away as I went down the checklists.  This FIT!  It explained everything I've gone through with A since she was an infant! 
  She was colicky, insisted on being held constantly, hated the vacuum (so much so that I had to hold her while I completed the chore, or wait until my husband got home to hold her for me), battled constipation, was a picky eater as she got older, didn't like getting her hands messy, couldn't stand it when I couldn't get ALL the sand off her feet after playing at the park.  She was content to swing for 45 minutes at the park and never do anything else.  She was terrified of slides, elevators and escalators.  She was unreasonable and illogical and had true meltdowns (not tantrums) almost on a daily basis.
  She had meltdowns when we washed her hair (the water couldn't come near her eyes OR her ears), she didn't like to hug friends and grandparents, she hated to be tickled.  She took FOR ever to go to sleep (I could rock her for an hour and she'd still be awake). 
  She couldn't stand to be called nicknames (to the point of melting down), she has an incredibly difficult time verbalizing what's upsetting her (her initial reaction is to yell--and she's 5 now!), she has a hard time figuring out where she hurts.
  She couldn't stand bumpy roads, tags in her shirts bothered her, she can't stand lumpy socks and there are many pairs of her shoes that she loves dearly but can't overcome her tactile sensitivities to wear them and that upsets her.
  SPD is a neurological disorder.  Basically a person's brain mistranslates different stimuli ranging from sound, movement, touch, taste, smell, sight and introception (the internal sense that one has to go to the bathroom or is hungry, etc.).  He is either under responsive, which causes him to seek out different stimuli (which can lead to autistic or ADHD type behaviors and even misdiagnosis), or she is over responsive and translates things as scary/painful/bad.
  There is no cure, but there are many strategies, therapies and even pieces of equipment available to help kids get what they need and respond appropriately to the world around them.
  Whew!  Are you overwhelmed yet?  Let me tell you from a momma who still battles depression occasionally and who is not very organized or structured I was relieved, but freaking out!
  Relief.  I had found answers!!  I wasn't a "bad parent" after all.  =)
  Then I went through a denial stage (it lasted about 2 days).  Is this really my kid?  It always seemed that almost as instantly as I'd ask this question, A was having a meltdown that proved that this was, in fact, the perfect fit.
  I went through a brief phase of guilt.  Sure I've done a LOT to make our lives as smooth as they are today (which is still rather rocky on a good day compared to "normal" kids), But I hate that she has to share a room.  Really for a kid with SPD sharing a room is not a good situation...but Bug and A are particularly bad roommates for each other.  He's noisy while he's going to sleep and loud when he wakes up in the morning.  He wakes up earlier than she does.  She's got some auditory sensitivities.  She likes Her space, which has to be monitored and limited since the room is both of theirs.  She likes Her stuff.
  Then I moved on to myself...I am NOT organized and I stink with structure.  Unfortunately A desperately needs structure in order to feel safe and in control.  My idea of structure was looked like  the world was spinning out of control to her.  And that level of structure was hard for me to attain!  Making sure I make the Same thing on the Same days every week for breakfast, remembering to start A's breakfast soundtrack on my iPod, having her set out her clothes for the next day the night before, and making sure she had approved clothing (read: tagless shirts and an extra pair of Bug's socks) to wear was (ok, IS) hard for me!
    I thought I was doing good to get her up at roughly the same time every morning, get her fed and make sure she got dressed and hair fixed for the day.
  Now I have to structure my days even more in order to ensure my child feels safe?
  I've got to be the worst person for this job!
  Then I got realistic. This is going to be hard. It will get better. It will never go away. God gave me A because He knew I could raise her well. God has also given me incredible resources (a great husband, an organized best friend, a supportive pediatrician) to use to help me and A get through this.
   And that's a brief overview of my life over the past month...and that's not even including Mom and her recent hospitalization!


  ~Alexis

Keepin' me on my toes...

                I have an emotional daughter.  I know this, but not everyone around me gets to see her true colors.  She’s pretty good about being incredibly obedient in front of other people and only acting out with me—I feel so privileged!

                As a result of having a child who is so much like me it’s scary, my life is rife with ridiculous power struggles and completely illogical arguments.

                For instance: this morning A was trying to get ready for Church.  I know that she has some tactile sensitivities (scratchy tags in her clothes bother her as does any other foreign fabric) so I packed a nice, fancy dress for her to wear (one of her favorites) and in anticipation of the tactile issue, I also packed a tank top to wear under the dress.

                After she got the tank top on she insisted that it was wrong-side out.  So, in order to avoid a totally pointless argument (what difference did it make if the shirt wasn’t right-side out, it was going to be under her dress anyway…) I took the shirt off of her and turned it the way she wanted it and helped her put it back on.  Lo and behold, she was convinced it was still right-side out and she wanted it the other way!  I finally cut the tag off for her and told her we’d try to put the shirt on one more time, and if she couldn’t find a way to make it work then she’d have to wear the other outfit I packed for her.  She was finally ok with the shirt and got her dress on. 

                Mind you, all this time she’s been crying and upset and I had to take her firmly by the arms and get in her face and remind her that I can’t understand her when she’s talking into my shirt and crying.  My MIL was watching everything play out and even asked if A could wear the dress without the tank top.  I almost laughed, sure I’ll let her wear the dress without it, but A would have a meltdown over that.  

                After that exhausting battle we finally finished getting ready for Church and left.  A and I were in the bathroom before services started and she had a complete meltdown about the sleeves on the dress.  She wanted to change or wear a t-shirt under it!  Yes, sweetheart I’ll magically pull a t-shirt out of my tiny little diaper bag because I knew we would have this problem!  Good grief!  I also found it annoying that she had been wearing the silly dress for 20 minutes at least and this was the first she’d mentioned about it.

                I had to explain to her that she was going to have to wear the dress because that’s what she chose and all our extra clothes were at Nana’s house.  When we finally joined her brother and my husband on our pew she was keeping her hands under her sleeves—sure, whatever helps!

                After I sat down my husband leaned over and asked what the meltdown was about.  Everyone had heard her crying and acting hysterical in the bathroom!

                It’s seemingly ridiculous moments like these that I’m reminded that I can’t reason with her.  A has gotten so emotionally involved in the situation that reason flies out the window.  I could have told her a thousand times that the shirt was wrong-side out, the way she wanted it.  I could even have shown her (and I certainly tried explaining and showing it to her today) and it wouldn’t have mattered.  Emotion distorts her perception of reality.  So what do I do?

                There are times I just put my head in my hands an take a moment to compose myself because I’m so tempted to yell “You’re FOUR for cryin’ out loud—YOU figure it out!” and then stomp out of the room.  However, I am the adult and there are many reasons as to why that’s a bad idea.  The main thing that helps me get through an episode like that (and we have an average of one a day, if not more) while acting like a grown up is that I know that this is real to her and if she doesn’t learn how to handle those emotions now, it will only get harder for her to understand how to control them later.

                I’m creating a relationship with her by helping her through each of these episodes.  She’s learning that I’m not going to force her to do something that is uncomfortable for her (this morning I let her choose to change out of the dress and tank top before we left the house while it was still a reasonable time to change her mind).  She’s also learning that she and I are a team through my refusal to threaten her and punish her (it ends up being me and her against the tag, not me and her against each other).  She’s learning to own her decisions (she chose not to change when she had reasonable time to do so, so she had to be uncomfortable or find her own solution until she can change).  She’s learning that it’s ok to cry, but that there’s a time and a place for it.

                Sure there are times things get ugly and I yell back.  There are times that I don’t know what else to do, so I spank her.  There are times when she’s being petty and I’m petty right back. 

                Has it always been this way?  Oh my, no!  There were days before she was even talking that I’d just sit and hold her while she cried and cried and I’d cry along w/ her because I didn’t know what else to do.

                I thought my “problem” would be solved when she started talking because she could finally tell me what was wrong.  Nope!  When she first started talking I only got one chance to guess what she was saying (and any of you who have had young kids just learning how to talk, you know how hard it is to figure out what they’re saying)—on a good day it was two chances and then she’d just melt down.  Her needs weren’t being met and I had no idea how to go about helping her.

Naturally, after she started talking more clearly, her response became “I don’t wanna tell you!”  Or she’d just be hysterical, not even trying to communicate with words.  Oh. My.  Are you seriously telling me I waited three years for this moment and it’s only made things worse?!  She’s four and a half and I still have to remind her to use her words!  I feel like we should be past that—way past that!

~Alexis