A "Praise You in the Storm" Kind of morning

I wrote on facebook this morning that it was a "praise you in the storm" kind of morning, and all three of us had cried before 8 am.  Not a fun morning.
I received a phone call at 7:20 from my middle schooler, in tears at the office, because she had forgotten her backpack.  Both girls start school 5 minutes apart from each other AND it's a PE day for my fifth grader, which means a SPD meltdown morning.  We'll just sum it all up to say that it was NOT pretty.  Not the way anyone wants to start off their day.
And Banana was struggling with SPD meltdowns off and on all night last night, already dreading having to put on the PE shoes and warning me that this morning was going to be bad.  And last night was so hard that I had to walk away and lock myself in my room for awhile to keep from exploding myself.
There is so much about SPD that is not understood...and not just in my household.  It's not known in the school systems...it's still fighting for acknowledgement on the registry of mental health issues (from what I've been reading...don't quote me on that)...there are still oh so many well-meaning adults that just assume that you are making excuses.  But for them...it is so incredibly real, and so overwhelming that it breaks your heart to watch them struggle with it day in and day out. 
As a mom, you can't help but feel like you are failing your child.  Because you can't take it for them...you can't carry it so they don't have to...and you have to fight insanely to get them help.  I'm still recovering from being really sick, and don't even know when I can pick the fight back up again. 
This may not be real in so many people's worlds...but it is real in ours.  And when she is in the middle of sensory overload, the meltdowns are the only way right now for her to get everything to shut up so she can try again.  But in the middle of that meltdown, she literally feels defeated and like she should be put away somewhere where she can't hurt anyone, and feels as if no one loves her and there is no point to exist.  NO ONE SHOULD HAVE TO FEEL LIKE THAT. 
It's hard for others to understand what we are going through, unless they are around for one of the meltdowns.  From the outside, limited view, looking in...she is an incredibly bright young lady with a lot of compassion for others.  She only feels safe letting down when she is in our house...and if you get a glimpse of a meltdown outside of the house, then she is so overloaded that she just can't fight it off.  There are people in her life that she will not allow to see her struggle...out of fear of their reaction...and when she comes home from hanging out with any of those people, she just falls apart and the best way to describe it is she melts.  Some meltdowns are easy to handle, and some of them leave all of us in tears.  It's not fun.  But we have been working so hard to get her to see that we love her anyways.  That while we can't take this for her, we will always be here for her.
And that gets me back to the "praise you in the storm" title.  This is our current life storm...we can choose to let it stop us and get us stuck, or we can praise God in the midst of it, allowing Him to carry us through it.  I will praise Him in this storm!

Goals

Sensory processing disorder very often leaves Banana feeling defeated. At 11, she struggled with feeling as if there is no sense in trying and that life is too hard. We've recently discovered that the sensory overload that she deals with on a daily basis can cause that. 

So setting goals for herself is a new thing. Where before she felt defeated before she even started trying new things, we are working really hard to just keep trying or keep practicing or just keep doing it until it no longer seems so scary. 

Now, I will be the first to admit that I do not always believe something is going to happen either...especially when it comes to fundraiser a. But this year, for whatever reason, she decided she really wanted to sell enough major saver cards to earn a limo ride. And rather than blowing it off as a fundraiser gimmick, in light of everything else going on, I decided to support and encourage her in this. She came up with a sales pitch, because she truly appreciated the extra perks that came with the card this year...namely the buy an adult ticket, get a kids ticket to LegoLand. Because she really really wants to go there. 

Here's how convincing she has been...she talked her dad into buying two. Another gal had already bought one from her own child and bought another from Banana to help her reach her goal. She even talked two of her Bo's into changing their minds. Not because the fundraiser was the best deal around, but because it was the first time she ever pushed herself way past her comfort zone, on her own, to work towards a goal. And it was incredible to watch. 

Her dad pitched in and helped her with the first five, and she got the last five on her own. I wish you could have seen her when she realized she had truly done it. And then today, in the car, she looked at me and said, "next year I just might go for selling 20".   This is so huge for her and I am so proud of her!

Now, I really understand the way this made her feel. I've been working on dreaming bigger and stretching my own faith muscles this year. Trusting God with everything, especially my kiddos. And this Christmas season, I set a goal for my friends and acquaintances that was beyond anything I could do on my own. And as God is making it all fall into place and actually happen, it is reinforcing the things He has been teaching me all year...that He truly cares about the things that I care about; that He wants to be my best friend, husband, and provider; that He loves me more then I can ever comprehend; and that He is enough and wants to use me and help me to dream big. And I am just grateful and overwhelmed. In a good way. 

Just have to vent (my apologies)...

There are so many hard things about Sensory Processing Disorder.
But outside of the hard of watching your daughter struggle...the hardest thing for me is the words of other adults...especially when its ones who should want the best for her.  Comments about how if I just parented different, or if she wasn't so manipulative, or "I don't care what you call it, acting like that is not okay".  Just makes me want to pull my hair out and bawl like a baby.  And she is trying SO HARD.  Especially around those that she just wants to please...namely the male figures in her life. 
Just a few words, and they truly make her feel like a failure and that there is no hope.
This is NOT how I want my daughter to grow up.
I do NOT want her to think that she is a problem.  Yes, she has struggles.  Yes, there is not a lot of awareness out there about SPD.  Yes, adults say a lot of things, thinking that they are being helpful, when they don't even know how little they actually know.  But when you can literally shatter my daughter, right in front of me...THAT IS NOT OKAY WITH ME.
Instead of telling her everything she is doing wrong...please start noticing the things that she is doing right.  Please see her for the precious little girl that she is...the one that is fighting so hard to adapt to her surroundings in the midst of sensory overload.
And while you are at it, please allow my other daughter the chance to grieve.  Don't make fun of her for being super quiet right now, while she fights not to cry in front of you.  She is broken hearted about losing one of her favorite married couple examples in her life.  Making fun of her or getting onto her for being moody does NOT help her.  And she always works so hard to be there for everyone else and not show her emotions.  I am trying my hardest to allow my girls to start feeling and acknowledging their emotions.  Do not belittle them for having emotions.  We were created as girls for a reason.
Okay...thanks for indulging me a few moments of emotional outburst.  (and yes, I catch the irony there).

Celebrating small victories

Around here, we genuinely try to celebrate the little victories, no matter how small they might seem to those around us.  Today would be a great example of one of those.
Today was PE day...if you have read some of the other posts, you know that that means not wearing the beloved, and comfortable cowboy boots.  Something that causes a sensory meltdown at the mere idea of putting on the tennis shoes and trying to get the pants comfortably tucked into them (she won't wear short tennis shoes...only the ones that go most of the way up her lower leg, and pants have to go inside the shoes, not outside). 
While she hates having to wake up in the morning, and never gets quite as much sleep as she wants, she does better on the mornings where she gets up on her own and starts a project or something in her room...this morning, I have no clue what she was working on, but even tho we were running late (I'm still not feeling the best, after having been sick for going on a week now), she still just sat herself on the floor, and put those dreaded shoes on without a single meltdown. 
It has helped both of us out quite a bit to know more of what is going on...what is the underlying cause of things.  She gives herself more slack, and I am finally becoming more patient/relaxed about it myself.  So when we have those moments of small victories, we now know to just enjoy this moment, for what it is...today's little victory.  It doesn't mean that we won't struggle on the next PE day, it just means that this morning we went to school without a meltdown.  And we will take it!

How do you know?

One of the things that makes me feel like a bad mom the fastest, is illness. She struggles daily before school and often complains of a stomach ache. So yesterday, I asked her to try to see how long she could make it at school, because I honestly couldn't tell if she wasn't feeling good, or just didn't want to go to school. I wasn't feeling the best either. After dropping her off, I ran a few errands and then fell asleep on the couch. 

I got a phone call at almost one saying she had been in the nurses office twice and just looked miserable. As soon as I picked her up and brought her home, she fell asleep curled up by me on the couch. When she woke up she looked at me, said she couldn't hear out of her right ear and that she thought she had another ear infection. 

Two hours later, we had seen the nurse practitioner at the minute clinic, who looked at her ear and said "she definitely has an ear infection", we got meds and headed back home. 

Sometimes she can truly verbalize what's going on (she's got a 100%accuracy record of telling me if she has strep or an ear infection), but other times she cannot verbalize it. But I felt cruddy for sending her to school...although she was pretty proud of herself for making it to lunch time. And antibiotics help her bounce back pretty quick...wish I felt as much better this morning as she does, but thankful that she does!

The dreaded day of the week...PE day

Around here, PE day is almost a bad word. Solely because it means she has to wear her tennis shoes. 

The thing she has always struggled with the most is shoes. She gets used to the way one pair feels, and that's all she wants to wear. In summer time, it's a single pair of flip flops, and when we wear them out it truly seems like the end of the world as we fight to find another pair that fits ok. Right now, it's a pair of cowboy boots. The only thing is, boots aren't allowed on the gym floor. At her old school her pair of tall soft leather like boots were allowed for PE day...but not in the new school district. The pair of shoes she picked at the beginning of the school year were similar to last year's tennis shoes, tall zip up canvas shoes...but this year's Target version was covered in sequins and doesn't have the give and flexibility of last years, or the loose fit of the cowboy boots. She absolutely hates them and it sends her into a defeated meltdown everytime she has to put them on. 

On top of it being PE day today, we overslept after our 2:30 am wake up call from our older dog who got sick. While we enjoyed the chance to see the snow, it was a bit of a struggle to get back to sleep, and then the snooze on the alarm clock decided not to work this morning. So we had the shoe meltdown on a morning we didn't have time for one. Not that mornings ever have time for meltdowns. 

I have to admit though, now that I know the meltdowns truly are due to the SPD, I don't take them as personally. I still wish that I could do this for her so that she didn't have to struggle with it, but it doesn't cause me to instantly feel like a failure anymore. I wish I knew of a way to make shoes easier for her, but I am thankful for the knowledge we are gaining about the true cause of the meltdowns and knowing that the meltdown allows her to stop all the messages that overload her brain so that she can move on with her day. I guess in a kind of twisted way, the meltdowns are a blessing if you remember that after she is ok and able to go on with her day. Never thought I would find a positive to them...hmmm...

Meltdowns

I think the hardest thing about the meltdowns is that to me, they seem to come from nowhere. And she cannot express, most often, why she is even upset. 

She just accidentally hurt me, and I said ow. Not even loud or mean. Just ow. Meltdown. And come to think of it, there are often meltdowns after hurting someone. Rather than say sorry or I didn't mean to, like I would do, she reacts as if she just committed the worst thing ever and her world ended. 

It's so hard to know what to do in those instances. Walk away and let her cry it out, force her to let you hold and comfort her, try to reassure with words she acts like she's not listening to. Its so different for her then the way it is for me. 

I guess that's why we are on this journey. To help us better understand how things affect her, and to get her help to be able to live in a way that is more doable and fun.  

I hope that she will be able to truly know how loved she is and wanted and to feel like she actually likes life. To know that she is different but not defeated. That it can be a gift to see, feel, things so sensitively...despite the hardness of it. 

Finding support

This morning, I decided to type Sensory Processing Disorder into facebook's search spot and see if it turned up anything.  I found this: https://www.facebook.com/sensoryprocessingdisorderparentsupport ... and lost an hour reading posts by other parents who face similar things to what we do at our house.
I cannot express what it means to me to know that we aren't the only ones dealing with this.  That others have struggled with hurtful things said to them by other parents who just assumed they were failing to control their child.  But most of all to be able to reach out and say, yes, I know how that feels.  Wow!
No, I am not any closer to getting Banana an appointment to get the ball rolling.  But we aren't the only ones facing this.
Yesterday, I got fairly frustrated because the doctor we were hoping to get to see seems like its a dead end, so we still don't have a new pediatrician yet.  And Banana had a full meltdown over a timed typing exercise in class...where she felt like there was no way she could do it or ever get a good grade for this.  That it was hopeless.  For a mom whose favorite thing is hope, its so hard to see my 11 year old struggle feeling as if life is hopeless.  I sat on her bed with her and just held her while she bawled, feeling like she had disappointed her teacher, and that she would never get typing in the traditional way, not pecking at the keys.  I tried to be reassuring, and I told her she could practice on my computer, that we would find her games to do.  After the meltdown, she came out and very timidly asked me if there really were games to help with that, and I was able to find some and she got so very excited when she was able to get 12 words in a minute with no mistakes.
It really is the little triumphs and finding support, that make it all worth while.  Every time she smiles, it melts my heart.  Because a smile for her is so much more then just her face moving...she reserves her smiles for the people she loves, or for those little triumphs in life.  Things that most of us would take for granted, but that for her are huge.
So we keep fighting!

Day 2 of phone calls

Yesterday, things were hopeful that we could just go straight to Children's Mercy to get diagnosed and started with Integration therapy.  Today, the phone call was returned and there is most definitely a process of hoops to jump through.  In order for her to get into the Children's Mercy program, she has to have an order from an occupational therapist.  In order to get to see an occupational therapist, she needs an order from a doctor.  Since she doesn't get along with her current gruff, no bedside manner pediatrician we were assigned to, and because we were told we would outgrow this, so it stopped being mentioned at visits anyways, our current pediatrician has no idea of the struggles, and we have no history of it in her medical records except for way back when in Jefferson City when I first brought it to that pediatrician's attention in kindergarten.  And unfortunately, the gal I talked to at children's mercy has no idea of any psychologists who take her insurance that would be able to make the diagnosis for us either. 
It feels as if we are at square one, again, with a slight glimmer of hope.  Yesterday, we at least were given a list of four female pediatricians that we could see if she actually gets along with...so I guess we start there.  Trying to get her into a doctor's office that we actually would go to, rather than always running to CVS Minute Clinic instead (and our favorite nurse practitioner there just moved to Lee's Summit anyways). 
I just wrote a post on Facebook in an effort to keep up my motivation to keep going with this and not give up.  I am going to keep the fact that next year is middle school...which for her would be constant change...which we are well aware causes overload where everything seems insurmountable to her.  Its to the point, that we really need the help to find ways to cope/adjust better.  My post said I will not give up, I will not give up, I will not give up.  Sometimes it truly feels like I am fighting a battle to get her help...but I want my daughter to be able to thrive and be successful in each day...to see her be able to smile easier, and more often.  When you notice every single smile, and it brings tears to your eyes, because they are so rare in her world of feeling overwhelmed...it gives you some extra determination.  No 11 year old should feel like life is just too hard and you wanna give up.
So we keep going on this journey...we don't give up.  We fight to actually get her the help she needs to be able to adapt to the constant changes that life throws your way.  And we fight for those smiles!

Another chapter in our adventure

When my youngest daughter started having trouble before school, we had no idea the journey we would be going down, no clue of how long the struggles would effect her, no idea that the way things feel would be such a hard thing for her to handle. In fact, we were reassured repeatedly by her pediatrician that she would outgrow it and that it was just the way she was coping with change..,by controlling the one thing she could control.

Some mornings, it took me and the school nurse to get her dressed and to her classroom. Once she was there, she settled right into her day and was fine. Some mornings, she would be ready to go early, and content. Other mornings, the slightest thing...like putting on socks brought out temper tantrums like I couldn't believe. I treasured the good days and cried with her on the bad ones. I wasn't the best mom and sometimes I would react in tears and anger right along with her. Other times I was able to keep a calm, reassuring voice. 

I quickly discovered that we HAD to have socks without seams at the toes, or very small ones on the outside of the sock. That underwear had to have a certain elastic around its edges. That nothing could have a tag, be too tight or too loose, or hang down too far. Pants had to be a soft knit and elastic waistbands of a certain size were a must. Any shoes outside of soft tall boots or flip flops resulted in explosions. The best thing I discovered along this journey was that if she puts her clothes on the night before, she is used to the fit/feel by morning. She had three outfits she liked, and I did laundry every two days. 

As mom, I knew this wasn't just something she was choosing, or that she was acting out of manipulation, or that I could just wish this away. So God and I have spent many hours discussing the situation, with me pouring out my heart in tears wishing I could carry this one for her, and feeling as if we were the only ones fighting this battle. 

From every side, I have heard how its just me and my lack of parenting, that I'm an over indulgent mom, that she just has behavior issues and I need to stick to my guns and break her down, that I just need to try harder. 

This was our constant, behind the scenes battle for most of kindergarten through 2nd grade, where she also faced more change in her life then some people do over their entire life...which just brought out more fits and frustration with fit and feel. 

Then in third grade, things had settled into a new normal, and she was in the bigger kid wing of the school. She had built up a pretty good relationship with some of the staff and felt more secure. The hard days were so few that when they popped up it felt devastating because we had sort of forgotten how bad it could get. I wondered if her original pediatrician had been correct and if she had outgrown it. And I was thankful for her good days. And when she was on roller skates, it was as if she had no struggles at all...she could just be a kiddo enjoying life. The trampoline was another activity that just allowed her to be herself.  Third and fourth grade, even after a move in the last two months of fourth grade, were much calmer for her...and the few tricks we had learned along the way were helpful. 

Then fifth grade. All summer she dreaded it, scared that she would be behind.  Which seemed so crazy because she is brilliantly smart and never had any trouble catching right on after being out sick (and she has had steep throat and ear infections often enough that perfect attendance has never been an option). The nightmares and sleep walking started up again, separation anxiety became overwhelming to her again, shoes became things she hated. Everything began to throw her and she started commenting that she hated life and it was too hard. She would cry herself to sleep, and I would do the same. And by this point, I wasn't even talking about how bad it had gotten to anyone, because it was just too hard to hear all the comments that made me feel like I wasn't trying hard enough, my discipline methods were failing, and that I was failing her as her parent. Her older sister and I just tried to be here for her and help the best we could scramble to do. And her teacher has been amazing at sensing when she is overloaded and needs a bit. 

On top of all the changes that happen in fifth grade, trying to get them ready for middle school, this year has been a bit rough with other changes...struggles with relationships, knowing one of her favorite adults was stabbed, feeling as if everyone was going to walk away from her eventually, just to name a few. Reassurances didn't help much and the clothes and shoes issues escalated so much that there have been times we haven't been at school on time...something that's never happened before this year. 

I finally started letting people in a little more. Telling people what it was like around here in the mornings. Allowing myself to cry on people's shoulders. Not trying to be strong all by myself. And sometimes, I got the same reactions that I dreaded hearing that just made me feel like a failure. But I also got challenged. To start researching and seeking help so this doesn't continue to negatively impact her ability to function. And then right after the challenge, I was "introduced" to a mom who face similar struggles with her daughter. She encouraged me more then she will ever know and right after getting off the phone I finally allowed myself to start investigating things..,to not be scared of her being labeled but seeking ways to help her cope/adapt. 

I knew she struggled with her senses and had heard the term sensory disorder. And oh the encouragement from researching it. Sensory processing disorder. According to the checklist, the only sense she doesn't react to in extremes is taste. The other four, she has struggles in. The extreme fits and tantrums are caused by neuron overload as her senses shoot up so many messages to the brain that she just can't handle it and the tantrums erupt. She isn't choosing this, it's something she will have to learn to adapt to and cope with off and on for her entire life. There is a reason for the struggles. 

But there's also hope. We live in a city, now...after a three hour move...that has multiple Children's Mercy Hospitals. All three of the ones by us have sensory integration therapy. We aren't the only ones facing this type of struggle. That means the world to this momma!  More then I could express in type. 

So, today we began our newest journey...the one to get this precious girl the help she needs to no longer allow her struggles to confine her or leave her feeling defeated. Calls were made all afternoon trying to get her a pediatrician in this area that understands her struggles and actually cares, and to get the ball rolling to get an official diagnosis so that she can get into the integration therapy. I was able to leave a message with the people who can get that ball rolling for us. 

This has been going on for long enough now that even just knowing the little bit that I have discovered already has helped me to react calmer, to remember she didn't choose this and isn't reacting that way on purpose, that this is a very overwhelming struggle. I hope I am becoming a stronger person for her and that I will not give up until she is truly getting the help she needs to be able to thrive despite the sensory overload. I hope I can help her to believe in herself and to find that life can be a joyful adventure. Because this is the adventure and journey that we are on!

Welcome to our journey.