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!