From tears to triumph!

I don’t think I have ever been more proud of my daughter than I was this past Sunday afternoon!  It was an absolutely amazing achievement for her in many ways, and especially in regards to her Sensory Processing Disorder / Asperger-like challenges.

We had signed her up for a FREE “Kids First” hockey class at the Dr. Pepper Stars Center, and yesterday was the class’ first venture onto the ice (class #1 was just picking up/sizing equipment).
It was absolutely precious to see all these 5-8 year olds in their hockey gear toddling around on their skates.  A few had skated before (Bug has been a total of 3 times, once a year for the past 3 years at Christmas time), but the majority of these kids had never been on the ice before, and they were all certainly beginners.

She had been looking forward to this for a couple weeks.  She’s enjoyed going ice skating with us at Christmas time when we hold her hands and toddle around the rink.  She loves watching hockey with us when we get a chance, and she has an older cousin who had done this class years ago.  To her, this was a chance to do something “cool”.

We arrived at the rink in plenty of time to get her dressed in her equipment.  We had tried on the equipment a few times at home, so she was comfortable wearing the skin pads, elbow pads, padded pants, and helmet.  With the exception of a bigger helmet it wasn’t too much unlike what she wears to ride a bike.   She was all smiles as she received her very own jersey to wear (and keep upon completion of the class), and couldn’t wait to get started.

UNTIL…..she saw the coaches putting out the goal nets on the ice.  Suddenly, she was hit with this overwhelming fear and perfectionism as she started bawling, “I can’t hit a puck into those nets, I can’t even skate yet!”.  She saw the coaches skating around, professionals that they are, and assumed she would be expected to do the same.  Thankfully we were able to convince her that she didn’t have to skate like the coach yet, and that they would help her.

Here is where I have to give a HUGE shout-out to Coach Katie!! The male coach (didn’t catch his name) was giving the “welcome speech” to all the kids before they got on the ice, and Katie took Bug on out on the ice and skated around with her. She held on to her, helped her up when she fell, and taught her how to get up on her own.  Most importantly, she removed Bug from the overwhelming crowd of kids anxious to get on the ice, and gave her some much needed ‘space’.   That did wonders for her!!  She doesn’t enjoy feeling crowded under normal circumstances, but when she’s anxious that feeling just gets worse and she gets into “fight or flight” mode.  That’s where she was, all ready to quit and go home just to “get away”, when Katie rescued her.  She scooped her up in her arms and skated around with her on the ice.  Bug’s face lit up at the “ride”, and she was able to relax a bit.
Bug was then left to skate around a bit on her own and get used to it.  Of course she fell, several times, but the coaches were quick to rescue her and encourage her.

Once it was time to get everyone on the ice, they were instructed to skate (or rather, “march” on skates) around a bit and then come together in a circle in the center. From the outsiders perspective, it looked like a comedy of errors.  Kids dropping like flies, some causing domino effect as they fell into someone else knocking them down too.  Up and down, they all went as they tried to figure out these things attached to the bottom of their legs.

Unfortunately, during this time, Bug had reached her limit.  Our little perfectionist was frustrated that she kept falling down, and was oblivious to the fact that everyone else was falling too.  Her bottom was hurting from all the falls, although I suspect not nearly as bad as her sensitive body perceived it to be, since she had some great padding on.  At one point, she was sitting on the ice just bawling hysterically, and our hearts were breaking.  I wanted to just run out on the ice, pick her up, take her home to cuddle and rescue her from the pain – both physical and emotional.

But we waited.  The coaches were right on top of things, and Coach Katie even picked up Bug at one point and was holding her on her hip (while on skates…wow!) and talking to her.  Coach Katie did her best, but eventually, Emily came rushing over to the doorway to us.  She’d had enough!  She was crying so hard that she could barely get out the words.  “This isn’t as fun as I thought it would be!”, “I want to go home!”, “My bottom hurts because I keep falling on it!”, “This is hard!”, and “My hair keeps getting in my face!”.

I took her in my arms and told her that we loved her very much.  We told her that we understood it was harder than she expected, and we pointed out that she was only one of MANY that kept falling down constantly.  We told her how proud we were that she was learning to get up all by herself.  We told her “You could go home, but why don’t you give it a little longer and see if it gets better.  You might end up really enjoying it.  You don’t have to be great at it, you are all here to learn, and the coaches will help you every step”. 

We reminded her that Mommy & Daddy were right here watching her, and that God was always with her.  We reminded her that she could pray to God in her head and ask Him for help.
Then, we tried a little bribery – I said, “How about you try to finish the class, and if you do, we’ll go to the store and pick out a new package of stickers?” .   She lit up at the beginning of negotiations!  She said “If I do good, can we go to the park as a reward?”.  We said “Of course, but you don’t have to be good at hockey.  We just want you to try to finish the class”.

I just knew that if she finished the first class, she would be so proud of herself.  I also knew that once she knew what to expect, the next 3 classes would go so much more smoothly.

So, out she went again, to give it another try, and by the awesome grace of God, she did it!!

She kept falling, but she bounced back up and kept going.  She skated fast and had several times where she skated halfway across the rink without falling.  She looked back and smiled at us.  She got hair in her face, and went to ask the coach for help (without tears!).  Her glove fell off, and she picked it up and put it back on (without fussing!).  HUGE accomplishments for an SPD kid!  She had been in the middle of a meltdown, and actually recovered from it within moments.  Thank you, Lord!!  Hubby and I were grinning from ear to ear and I was just amazed!  Normally, once she hits that meltdown mode, we are D.O.N.E – done for the day.

Then, they brought out the pucks! Soft, foam ones, not the hard “professional” ones.  They tossed them all on the ice, and the kids just went to town trying to get them in the net.

Another achievement for Bug!!
She got a puck and hit it toward the net.  She missed.  She fell.  Another kid fell and landed on her puck.  She hit the puck from right in front of the net and it went way off behind the net.  She lost her glove.  But, she kept trying!! She chased that thing around the ice, behind the net, and back before finally making it in the net!!  You should have seen the smile on her face as she turned around to look at us!! You would have thought she just won the Stanley Cup!  Mommy & Daddy’s smiles were even bigger than hers as we gave her thumbs up and cheers from behind the glass!  The determination she showed was incredible!  She didn’t fuss, she didn’t cry, and she didn’t quit!!

This is HUGE for her.  Bug does not do well when she gets something wrong, or doesn’t succeed the first time.  She is a perfectionist, and often quits when the going gets rough.  But she kept at it!  She even fell down and lost a glove during all this, but bounced right back and kept going, determined to make that goal!

After the first one, she claimed another puck and did it again! 

When class was over and she stepped off the ice, her first words were “I want to be a hockey player when I grow up!”.


She went from this sad, dejected, frustrated, miserable, confused & hurt little girl at her meltdown point……



…..to THIS – proud, confident, happy, excited, determined & accomplished ice hockey class participant!!


(Sorry the pictures aren’t great.  It was low-light, and we were behind the glass.  The “after” picture was taken from a video, but even so, you can just SEE the glowing in her face!)

Here is the video (1 min, 39 sec) of her chasing down her first puck and making her first goal! (She's the one with the blonde ponytail hanging out of her helmet!)

When the going gets rough, just take off your panties!

We’ve had a couple of busy couple of days around here, and that means a very haphazard schedule, which makes our SPD kiddo all the more sensitive and out of sorts.  Even after a bath tonight (which normally does wonders for calming her down and desensitizing her), she just could not find any panties that were comfortable for bedtime tonight.  She tried on about 7 pair of panties including her old favorite standbys, a couple pair of bike shorts, and even her swimsuit shorts (since she wears those sans panties), but none of them worked. 

Finally, she decided on a nightgown without panties. What are you going to do? In this case, sensory needs far outweigh modesty.  I did remind her that this was only ok because it was bedtime, but that we had to have *something* on over our bottom to go to church tomorrow.  If we don’t make it to church, you’ll know why!

I will say that I am oh-so-proud of her for actually using her WORDS to tell us how she was struggling tonight.  Usually we get a lot of tears, whining, and flailing.  Tonight, she was able to stay in control enough to say “these just don’t feel good” and “those have seams so they bother me”, and finally, “can you give me a massage to keep my legs from hurting tonight so I can sleep?”.   WOW.  I made sure to praise her highly for her awesome communication skills in the middle of such an uncomfortable period for her.

Looking for a diagnosis

In a recent post I talked about Bug’s recent diagnosis with Sensory Processing Disorder, ADHD, and giftedness.  

How did we get this diagnosis?  What made us seek it out? Why did we even want a diagnosis?  What did the label matter?  I asked myself this many times, and had it asked of me many more. 

We already knew that Bug has SPD, even though it was not confirmed.  We had already been seeking out books & information to attempt to learn all we could about this and how to help her.   During this process, I learned about a local horse therapy program (a FREE one!) that I desperately wanted to get her involved in, but we needed a diagnosis first.   They needed something from a doctor/therapist that listed a diagnosis to be accepted into the program.

The other reason I wanted a label, was so I would know where to look for help.  There were so many things that her symptoms could have been, and I wanted to be researching the right ones so I could find the right solutions.  I couldn’t help her if I didn’t know what I was supposed to be expecting, or what her challenges were.   We had tried for a long time to “deal with it”, or to “fix it” through discipline or behavior charts, but nothing was working. 

Anyway, I could get her in to this free therapy if we just get a diagnosis, right?  Great, I thought, we’ll call the doctor! Well, her doctor didn’t diagnose this type of thing.  Neither did several other doctors I called.  Where do I turn, then?  Finally, someone on a local message board recommended I contact Our Children’s House at Baylor.   What a blessing!!!   All they needed, was a prescription from her pediatricians office, which they were happy to give.  We made an appointment with the neuropsychologist and were on our way!

Bug and I went one day to meet with the doctor at OCH.  There was a brief intro period where Bug  played in the room while I talked to the doctor about our concerns.  Then, I went back to the waiting room with my stack of paperwork and evaluations to fill out while the doctor evaluated Bug on her own.  Several hours later we were done.  R and I went back a week later without Bug to get the report and talk to the doctor.

Honestly, when we made the appointment, we were trying to rule out  or confirm Asperger’s, which is why we wanted to see the Neuropsychologist first before the OT.   From the little we knew and had read, we thought she displayed many of the symptoms.  Well, the doctor said she didn’t quite qualify for it even though she scored “highly probable” for it on all the tests because there were a couple issues that Bug did NOT have, that in her opinion, all AS children have.



We also learned that she has multiple things going on that, when combined, display themselves in a variety of ways.  Often these issues displayed themselves in ways that appeared as though she had behavior problems.  From the outside, it would seem she was misbehaving or being defiant, when so much of the time, she was acting involuntarily.  

In addition to the ADHD, and Gifted diagnosis, the doctor recommended a full OT evaluation for Sensory Processing Disorder.  We were already certain she had SPD, but needed the diagnosis.  This doctor couldn’t give it because it wasn’t her specialty, so we needed to see the OT.  Makes sense.

To get the OT eval, we needed another prescription from Bug’s pediatrician’s office.  That took a couple days, but came quickly.  The OT eval was much shorter (a couple hours), and the OT was able to tell me a great deal of information right away! 

We started once-a-week OT therapy the next week, and that’s where we are now!  We’ve only had one session, but I’ve already received a wealth of information from the therapist and can’t wait to see her again this week to ask more questions.

In another post soon, I’ll talk about what we are doing at home to help.

The dangers of finger paint

You all know that due to our daughter’s SPD, we’ve avoided artificial coloring in our food for over 2 years now.  Now, we even have to be careful about non-edible things like finger paint because it soaks in through the skin.

Tonight was just classic!  R was in with Bug while she was having her bath tonight and I was doing some other things, so I didn’t go in until near the end of her bath time.  I got there just in time for the show!

I went in, just as R has given her the “2 minute warning” (she needs a lot of help with transitions), only to see her acting like a laughing hyena that just finished off a pot of coffee.   I truly thank my Heavenly Father she was *happy* hysterical this time, but YIKES, was it nuts in there!  She was  attempting to clean up her toys, but was bouncing & rolling around in the tub (as much as one can actually bounce in a tub) as the water was draining out and didn’t even stop when it was empty.  She was laughing hysterically and her body was just out of control.  She couldn’t stop herself, and I was beginning to think she was going to bust her head on the side of the tub with all that slipping, sliding, rolling, & bouncing!

I had to bite my tongue not to laugh at her out loud, as I was so thankful that she was at least in a good mood for this one, instead of the opposite, which is common.

At some point, I looked over and saw the RED finger paint that she had been playing with in the tub, and turned to ask R, “How much of that got on her skin?”   He replied, “Umm, a HUGE amount!”.  Suddenly, we knew exactly what was going on.   Yes, *I* bought her the paints.   She’s a sensory seeker, and gets out of control with paint so I figured letting her paint in the tub was a no-brainer.  Obviously, it was a no-brainer as I wasn’t using my brain when I bought them :)   R confirmed that they had a similar reaction last time he had her use them in the tub.

We had to literally pick her up out of the tub since she couldn’t focus enough to step out on her own.  She couldn’t even hear us talking to her.  We wrapped her in a towel, and I carried her to her room where I laid her down on the floor and prepared to give her a little massage in the hopes that it would calm her down a bit. 

WRONG!!!

Instead, the instant the lotion (the same one we’ve been using since she was a baby) touched her tummy, she screamed out that it was HURTING her belly button!

Fine – wiped it off, tried the chest.

Nope! That hurts too! 

Ok, I said, we’ll do a massage another night.  

She insisted she wanted a massage, so we rolled her over and tried her back/bottom/legs.  

“That hurts my butt!”  (We couldn’t help but laugh at this one)

We gave up and tried to move on to PJs.

She put her button down shirt on backwards, and tried to convince us that she should get to keep it like that.  We told her if she could get it on, and button it herself she could wear it like that.  She got 10 seconds.  Didn’t make it.  We finally convinced her we’d do a “backwards day” for homeschool one day and she could wear it all day long.   By the way, I don’t really care if she wears her PJs backwards, but I didn’t want to get woken up at 2 am with her screaming that she wanted it turned back around – something very likely to happen.

Ok, finally PJs on.  Check.  

Now, we need to get 2 stories read because if we stray from the routine, we’d be in even more trouble.   We picked out 2 of the shortest stories we could tonight, and attempted to sit down to read them.  She was all over the place, laughing, bouncing, still hysterical, so R and I each read our story as fast as we could.  I don’t even think she heard most of it since she was talking pretty much the entire time.  Normally, we would have stopped reading if she kept interrupting, but tonight she wasn’t even aware of it.

After the stories, we gave hugs and kisses and put her up in her top bunk.   At that moment, she proceeded to kick her legs hard and yell “I don’t want to go to bed! I’m not tired! I won’t go to bed!”

Excuse me?

She *never* fights us about bed when she’s sane.  Never.   She was given a choice of keeping her light on and having her usual reading time, or throwing a fit and losing her reading time.   We did manage to get an apology from her, so she got to keep the reading time.  

Secretly, we’re hoping the Melatonin kicks in soon and she won’t need much of the reading time anyway!

During this whole episode, I was reminded of that day in the department store over 2 years ago when we first saw her clearly react to food coloring.  It was scary!  Tonight, I just praise God that we were able to laugh during the whole thing.  No yelling, no tears, no frustration.

And somehow – by the grace of God – Bug actually had a brief moment of clarity when we asked her to say her prayers.  She thanked God for her day, for her family, and for JOY & 
LAUGHTER! 

Praise God for joy and laughter!  Even if it was chemically induced tonight.

Praying about panties

Seems an odd title, don’t you think?  Not to me.  See, praying about panties is a very regular occurrence in our home.  

Our daughter, Bug, just turned 5 a month and a half ago.   2 weeks ago, she was officially diagnosed with Sensory Processing Disorder (SPD), although we had suspected it for quite some time now.

We also found out through this evaluation process (with a neuropsychologist and an occupational therapist) that she has ADHD, and she scored as “gifted” in her learning and verbal abilities.  These 3 things, all combined, make for some challenging times.  Unfortunately, to the outside world that doesn’t have all the facts, she sometimes appears to be misbehaving, not listening, ignoring instructions, or being defiant.  Truth is, so much of it is involuntary or simply her mind/body trying to make sense of things in her world.

I want to start publicly sharing about this in the hopes of helping others that might be going through this to feel like they aren’t alone.  I hope to educate people about SPD because it seems like many people, even physicians are not very familiar with it.  I also want to just share how God is using this in our lives.  I NEVER want to appear as though I’m complaining about my daughter, so please hold me accountable if it ever appears that way.   I ADORE my daughter, and consider her a true miracle gift from God.  If you don’t know the story of her miraculous birth, ask me! I love to share!  I’ll save that post for another time.  I am honored that our Creator trusts R and me enough to put this sweet girl in our care.  I just want to learn enough about her, so that I can do the job He gave me to do.   I want to learn about these conditions so that I can better help her cope with the difficulties she faces.  I want to be compassionate about her needs, while also teaching her to properly interact with others.    Most of all, I want to love and appreciate her right where she is!   I want to see her through HIS eyes, and I want to see the world through HER eyes, because that is what brings me closer to His love!

Looking back, we can see signs from infancy and toddlerhood that point to this.  We were first time parents though, and didn’t have much to compare her to, in order to know what was “normal”. 

Normal.  I really dislike that word, anyway.  God made each of us unique, specially purposed for HIS plan.  Why would we want to be (or want our children to be) like everyone else?  Yet, we often do.   Thankfully, I’m learning to appreciate her differences and to embrace them.  I wish I could say I did that daily, but I’m learning. 

What made us seek professional help?  

Here are just 3 of the reasons that really stood out early on.  Many many more followed, and I will list those in a later post.

1) Her reaction to artificial food coloring.  We didn’t give her any sugar until she was 2, so we never noticed this reaction before then.   God had graciously allowed me to have “heard of” food colorings causing reactions in children through some various channels in the past, so when it came up in our house, I was vaguely familiar with it.  At least, enough to wonder if it was the culprit. 
One day, R and I were at the mall with Bug, having a great time….until we let her have a cookie with sprinkles on it!  We were walking around a department store, and within minutes of eating it, our child turned into some crazed, aggressive, mean person we’d never seen before.  She was literally yanking clothes off the hangers and throwing them on the ground left and right.  She was out of control….and we were scared.  This was not our child.  We strapped her in the stroller, and got out of there.   After what could have only been God’s urging, we thought to go get her some “real food” and see if that helped.  Finally, after what seemed like hours (but was probably 30 minutes), she calmed down.   But we knew something was wrong.  She never threw tantrums, and was truly a very easy going, well behaved child. 

We went on to “test” this theory about the food coloring under controlled circumstances at home 3 more times.  Each time, same reaction.   After that, we banned all artificial food coloring from our home and we haven’t looked back.  It’s been a couple years now.   Thankfully, we have been able to find substitutes for just about anything.  Whole Foods and NaturalCandyStore.com are my favorite resources for this!  We are thankful that Bug has adapted to this lifestyle without a fuss, and is perfectly comfortable telling people she’s “allergic” to food coloring and bringing her own snacks/treats everywhere we go.

2) Her reaction to having socks on her feet.  She has never liked socks.  Never.  Can’t say as I blame her, as I don’t either.  The difference is, when I don’t want them on my feet, I pull them off.   Bug, on the other hand, would scream bloody murder while slapping and punching her feet as if her socks were filled with fire ants.  Not a typical reaction, I’d say.  Thankfully, we are able to cope with this by simply avoiding socks.   She doesn’t wear them.  Ever.  Not with snow boots in Michigan in January.  Not with tennis shoes.  Not with cowboy boots.  I figure if it doesn’t bother her, it doesn’t bother me.   On a RARE occasion she has worn them in order to play somewhere on a play area that requires them, but 9 out of 10 times, she will ask to go somewhere else if she knows they require her to wear socks.

3) The panties.  The aforementioned panties.  For a while, she was fine, and then almost overnight, her panties “bothered her”.  Every single pair of them.  She’d put them on and say they bothered her.  I tried checking for things that might be poking her.  I checked to make sure they weren’t too tight, or too loose.  I made sure the elastic wasn’t crooked.  I checked everything.  This became a daily occurrence where we spent way too long picking out a pair of panties.  Then it happened.  One morning, she just melted down completely trying to find a pair that worked.  Poor thing, she was frustrated, discouraged and confused.  She melted in my arms sobbing, and I just prayed for her.   That evening, we went out and bought 50 pairs of panties.  Seriously!  Every brand, various patterns, fabrics, styles.  We even bought some “boy” underwear because she liked the dinosaurs on them.  Who knew….many days those were the ones that worked best…when on backwards!  Good thing no one would see them anyway, so who cares!

I still pray with her about this multiple times a week.  She’ll be getting dressed, and I hear it.  The sounds that tell me she’s tried on several pair and nothing is working right today.  So I go in and sit with her and pray over her, asking God to please allow us to find a pair of panties that will work for the day.   Every time, after we pray, we find a good pair within 1 or 2 tries.  Praise God!

Thank you for joining us on this journey!  I covet your prayers, and would love to hear from anyone that deals with this in their life as well.

Best toy EVER!

I don’t know what took us so long to get this.  We should have had this 2 years ago!  We recently bought Bug an exercise trampoline, and it is the best thing we have ever given her! 
Bug is extremely high energy, and she is a sensory seeker! That just means she is always on the go – moving, touching, bouncing, taking it all in!  Sometimes it is hard to adequately meet those needs inside our home, and we just can’t always go outside and swing, to the park, or the pool. 
Now we have a perfect indoor tool to help meet her needs!  She uses it first thing in the morning, off and on all day long, and before bed.  Anytime she feels she has extra energy she needs to “get out”.   For many kids, this might wind them up too much at bedtime, but for Bug, it actually helps to get out some of the extra energy so she can settle down and relax. 
Who knows, maybe she will even give Mommy a few minutes to get some exercise on it!   R is enjoying it too!  Just watch my handsome hubby!  He is the most amazing dad ever!