Thursday, April 23, 2015

What Does SPD Mean To Me?

After reading The Out of Sync Child and realizing sensory processing disorder (SPD) describes my Ladybug far better than any autism spectrum disorder, I mentioned to her pediatrician that if SPD is real, she has it.  And she asked me what that meant to me.

That is an excellent question.  I either think I am crazy, over-diagnosing completely normal childish behaviors, or I feel like no one else has any idea what my life is really like.

So for me, SPD means...


  • As my child gets older, she requires more effort and attention, not less.  She gets physically and mentally harder to parent, not easier.  I look back at nights of colic and think, that was easier.


  • Any mistake costs me time.  A cabinet not latched.  The kitchen not blocked off.  A jar not put away.  And typically, it doesn't cost me a few minutes.  It often costs upwards of 30 minutes, sometimes more, by the time I clean both the child and the surroundings, in addition to the cost of the item wasted.  There is NO room for error. 

  • I must weigh the need to go to the bathroom or anything that takes me out of sight of the kids against the risk of finding mayhem when I return. This means simple things, like showers, toileting, personal hygiene and maintenance, must either happen at 6am or it doesn't happen at all.
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  • Every event, every day, is approached with "how will she cope with this?"  Meltdowns are more likely after social events.  I decide whether or not the benefit outweighs the possible consequences.  Changes in plan are often accompanied by screams and resistance.  She may appear very placid in public, but when we return home, the windows may rattle as she apparently simply can't cope with anything else.

                                                                
  • I am to the point of deciding my time would be better managed by devoting myself 100% to my children during their waking hours, rather than trying to get anything accomplished around the house.  Because if my attention is elsewhere, she is likely causing mayhem that will take even longer to repair.
     
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  • I am continually running on empty.  I am mentally exhausted.  I am constantly trying to come up with things for her to do, ways to stimulate her senses and meet her seemingly unquenchable desires.  Ways of handling her meltdowns.  Forms of discipline and training that will work.
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  • I struggle with hope.  Because things are getting harder.  I look forward to her being in school.  But I wonder if I will need to home school, and how in the world will I do that?  Every time I've thought things are getting better, they've stopped improving.  And I try to focus on what has gotten better.  Such as, she is no longer obsessed over closing doors.  Yet what has that been replaced by?  Painting herself in oatmeal & Nutella. Can we go back to the door closing?                                             
  • I feel guilty.  Because I'm living the life of which I dreamed.  And yet... I can't wait for bedtime.  I want to enjoy my children.  I reach the end of the day and my creativity and patience are long gone.  I feel foolish for having so many children in so few years.  I could never have known what it'd be like, and I wouldn't trade any of them, but I still sometimes feel guilty for putting them through a childhood like this. 





     This is part of why I have started making extra effort to get pictures of the grins that come when she's enjoying something.  Because I need that visible reminder that something I'm doing is working.  That I'm not making her miserable all the time.  And I take pictures of the messes, because as much as I'd like to forget them sometimes, I want to remember so that when my children are grown and I see a mom struggling, I will remember that these years that are supposedly awesome can be really tough.  
And I am aware that every child has their own unique challenges.  Just about all kids get into things.  Many kids enjoy getting dirty.  Most kids pitch fits.  And 3 is a tough age.  Each individual thing depicted in the pictures above, for example, is not what bothers me.  It's all of it together.  It's the daily, multiple times a day, stuff that exhausts me.  Perhaps, in another year, I'll say to myself "you really were nuts.  She's grown out of all that and is a completely normal kid and you over-reacted."  But in the meantime, if using techniques created for kids with issues helps, then I'm going to read those books and use those ideas.  

Tuesday, February 17, 2015

"This is Only A Mountain, Tell It To Move, It'll Move"... Or will it?

In my mailbox this afternoon was a small card.  Someone was kind enough to bless our family, with not only including us in their daily prayers but also letting us know that we're in those prayers.  Having just dealt with yet another pair of poo filled underwear, and having not dealt with it well, this was such an encouragement to me.

On the front of the card was this saying by a Bonnie Jensen.  "There is nothing more powerful than a faith-filled prayer -- it has the grace to comfort the soul and the strength to move a mountain."

This brought to mind a song I had been meaning to write about... a song by Jason Castro entitled "Only a Mountain."  The premise of the song is, I would presume, Matthew 17:20, which says "He said to them,“Because of your little faith. For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.”

While living in the Tri-Cities area of Tennessee, I enjoyed hearing this song.  I thought it was a great song.  But, with a few more years and a few more pounds under my elastic waistband, it no longer sits well with me.  It had been months since I'd heard it, but when it was played on the radio a few weeks ago, I was on my way home from yet another visit to a local surgeon because of Ladybug's chronic wound.  

And it occurred to me... no.  You can't just bounce around to a song singing "You don't have to find your way around it; tell it to move, it'll move. Tell it to fall, it'll fall."  I understand there were good intentions behind the writing of that song, but it reveals the dangers of taking a single verse without the context surrounding it.  Especially if you have not been blessed to have had the full Bible taught to you, this could be very frustrating.  "My mountain isn't moving.  Maybe I don't have enough faith.  Maybe God isn't real, since that's what He's supposed to do and He's not doing it."

Now granted, if you're basing your faith a single song you have other issues that need to be addressed, but still...  God does not promise to move every mountain upon our command.  There are many faith-filled people who beg God and fully believe that He can do as they request, but He answers no.  

I'm aware of a mother who is full of faith.  She believes God can heal her son.  She believes in miracles.  She's seen them happen.  But her son is two years old, and he did not leap out of bed this morning and great her with spontaneous language.  She had to get out of bed, lift him from his seat, strap on his braces, and continue trudging up the mountain in front of her as she spends hours feeding and burping and pleading for an ounce of weight gain.  She prepares mentally and physically for yet another surgery.

I'm aware of a woman who is full of faith.  She believes God can cure her of cancer.  But this morning, she woke up, got out of bed, and continued trudging up the mountain before her.  She is preparing for surgery.  She strives to think positively and take care of her body while it fights cancer.  
I have a mountain.  It's a crater in my child's head.  I've encountered mountains before, called craniosynostosis, called Chiari Malformation.  Could God have healed my daughter from any of those?  Yes.  He could have.  Did I believe Him capable of unfusing her skull without any surgical intervention?  Yes.  Did I believe Him capable of giving her brain room and pulling that cerebellum back up on top of the skull base?  Yes.  Did He choose to move that mountain for me?  NO.  

I asked.  He said NO.  He left that mountain there.  

Why?  

I don't know.  But I do know, God's will was for me to climb that mountain.  It was not His will to move it.  

Will God move the mountains in front of the other two ladies I mentioned?  I don't know.  He can.  I pray He will.  But, if He chooses not to move them, I pray that they will have the strength to keep climbing.  Even if it feels they are slipping backwards.  Even if it feels it will never end.  

Because the God who is capable of moving mountains, is also capable of strengthening the feet, the hearts, the souls of those who are climbing them.  

And so, back to the quote.  Which I love.  This Ms Jensen, whomever she is, has it correct.  She does not say that prayer will move mountains.  She says it has the strength to move them.  And it has the grace to comfort the soul if that mountain is not moved. 

Are you facing a mountain?  When you pray, do you believe that not only is God capable of moving that mountain, but that He is also capable of equipping your feeble self to climb it?  

Saturday, November 29, 2014

A Season of Thanksgiving

When gathered around the Thanksgiving table, how many people say they are thankful for surgical scars?  Or that they are thankful for debt?  Or that they are thankful their house is messy?

This time last year, things were feeling rather bleak.  We had much to be thankful for, but things were ugly on multiple fronts.  I was struggling to cope with a possible autism diagnosis for Ladybug.  I was dealing with her bad days, waking multiple times a night, watching regression and struggle and wondering if things would ever get better for her.  We had gallons of water freezing inside our house.  The Mechanic was freezing on an air mattress in the concrete unfinished basement that was called a bedroom.  We were bathing the girls in a Rubbermaid tote, and washing our dishes in water that was nauseating. 

This year, we have two new surgical scars.  And I am more thankful for them than anyone who hasn't been through this kind of thing can even imagine.  One scar brought me a baby boy, whose smile as soon as he sees me can brighten even the roughest day.  Yes, we have a pile of NICU and flight bills, but he came back to me healthy.  Those first few hours were scary, and those two days without him were probably the hardest I've faced, but they have made me treasure him even more. 

The other scar brought my oldest daughter back to me.  She's no longer slipping away, but blossoming, growing and learning at a scary rate!  Her quickness to smile and laugh, the pictures I now have of her looking right at me and giggling, make her stack of bills worth every cent!  Yes, her scar is going to be more visible in two places than it "should" have been.  But to me, those places are like pillars that the Israelites put up, to remind them of the great things God had done for them.  She is healing, she has skin covering those wounds that we battled for nearly 5 months. 

We have a mortgage.  Sounds like a bad thing, but it means we have a house.  A house that is ours.  Well, ours and the bank's. But no "mean man" has any right to come into our house and threaten us.  My heart doesn't race when I hear a knock at the door.  I have an appreciation for a roof over my head that I've never had before.  A permanent place to call home, with a kitchen, and separate rooms, and working heat, is something that we take for granted until we face living without them.  We would never have been sleeping under the stars, but living in a camper with a newborn and two toddlers would not have been pleasant.

Our house is messy, but mess means life.  And our house is full and overflowing with it.  Turkey works together with Ladybug to create the biggest mess they possibly can; if one book out is good, all the books off the bookshelf must be even better!  We have special drawings by Turkey on the bookshelf, and no matter where I put it she always seems to manage to get into the margarine.  With two toddlers, the mess and noise level don't simply double, it's as if it quadruples. But I can't imagine not having Turkey right there in the middle.  You can't help but smile when she comes out wearing the 3rd outfit of the day, with the shirt and pants on backwards, or only wearing a diaper and an upside down coat, or wearing absolutely nothing except shiny red shoes and a hat.

I truly have much to be thankful for.  A husband who loves, protects, and provides for his family.  Three beautiful children, full of life and joy and challenges.  And even a dog, despite him living up to his name of Chaos.  Material possessions that need to be picked up, dishes that held food that need to be cleaned, and grace that strengthens when my blessings overwhelm me.

Wednesday, October 15, 2014

"I thought you said we needed to rest?!"

"The apostles gathered around Jesus and reported to him all they had done and taught.  Then, because so many people were coming and going that they did not even have a chance to eat, he said to them, "Come with me by yourselves to a quiet place and get some rest." 
So they went away by themselves in a boat to a solitary place.  But many who saw them leaving recognized them and ran on foot from all the towns and got there ahead of them.  When Jesus landed and saw a large crowed, he had compassion on them, because they were like sheep without a shepherd.  So he began teaching them many things.  
By this time it was late in the day, so his disciples came to him. "This is a remote place," they said, "and it's already very late. Send the people away so they can go to the surrounding countryside and villages and buy themselves something to eat."
But he answered, "You give them something to eat."
They said to him, "That would take eight months of a man's wages!  Are we to go and spend that much on bread and give it to them to eat?"
"How many loaves do you have?" he asked. "Go and see."
When they found out, they said, "Five - and two fish."
Then Jesus directed them to have all the people it down in groups on the green grass.  So they sat down in groups of hundreds and fifties.  Taking the five loaves and the two fish and looking up to heaven, he gave thanks and broke the loaves.  Then he gave them to his disciples to set before the people.  He also divided the two fish among them all.  They all ate and were satisfied, and the disciples picked up twelve basketfuls of broken pieces of bread and fish.  The number of the men who had eaten was five thousand."
I needed time.  The immense needs of my family were overwhelming.  I was ashamed of the voice I heard coming from my mouth.  The visible reminders that having three bodies that require constant supervision lest they destroy things or harm themselves or each other, and the thought that things are going to get worse before they get better when the 4th becomes mobile and also requires constant supervision, came crashing down on me so hard I could barely hold my head up.  I found myself clutching my coffee and sitting on the couch staring into space, hanging onto sanity by a thread.  I felt I was fighting sitting in a corner, beating my head against the wall.

I realized the stupor I was slipping into, recognizing a place I'd been before.  I don't want to go there again.  So I thought I'd take some time to read Scripture.  I'd recently had a blog post arrive in my email about controlling anger as a mom, and one of the things mentioned was that even Jesus said to be by yourself in a quiet place, quoting Mark 6.  Of course, I was frustrated by the fact that I wasn't even able to use the bathroom yesterday without someone putting butter in their hair, so I wasn't sure how I was supposed to accomplish alone time without disaster spreading.  But I sat down in the floor of the bedroom, turned to Mark 6, and started reading.

I smiled when Mark records they didn't even have a chance to eat.  Don't young mothers know what that's like!  One day this week it was 2pm before I had anything besides coffee, and I'd been up since before 7.  I was a bit jealous when I read they went away to a solitary place; must be nice to be a man and not have to take the kids with you. But then I realized what the next story was.

Not only do they not get to enjoy solitude because Jesus teaches the people that followed them, but He turns to them and tells them to feed them.  They're exhausted.  Probably hungry.  Worn out.  Stressed.  And were hoping for some time to rest and recharge.  And now they're being asked to serve?  From the very guy that told them to get some rest?  In frustration, I imagine, they point out how expensive that is, and I'm sure they were also thinking they didn't want to go shopping and cook and spend more time on their feet.

But what does Jesus do?  He performs a miracle.  He spreads their resources beyond anything imaginable and enables them to serve in the way He asked.

And at that moment, in walks a crying Karen, face covered in snot and missing her pants, hair still messy from the butter escapade yesterday.  And she puts her head on my shoulder.  I pull her into my lap and realize she has a dirty diaper.

Yes, Jesus said they needed to rest.  And God says He will lead us beside quiet waters.  But that doesn't mean we're actually going to get to rest in the here and now.  He is capable of spreading my resources beyond anything I could imagine.  My patience.  My kindness.  My mental strength and creativity to deal with the challenges of multiple toddlers.  He has expanded our material resources and proven Himself capable of providing.  He is just as capable of providing for the mental and spiritual and emotional needs as He is the monetary and practical needs.  What an incredible realization.  What an awesome God.

Friday, October 10, 2014

Bountiful Baskets Adventures

Since moving to the middle of nowhere, I have been challenged to find quality fresh produce for reasonable prices.  The girls love fresh fruit, but even bananas aren't good quality here just because of the distance they have to be transported.  And everything is more expensive.

Despite hearing about it before I ever moved out here, I just recently began participating in the Bountiful Baskets coop.  I've been extremely pleased with the amount we receive for the price, and the quality is much better than I can typically find in the stores.  I've not had decent strawberries since we left Tennessee, but my last basket included some that tasted like they were straight from heaven.  I really didn't want to share them with the kids!

Because it's a coop, you don't pick and choose what is included in your baskets.  I'm a boring shopper since the range of fruits and vegetables I've been exposed to is rather narrow, so this has been a great way of adding variety to our diets and exposing the girls to new things.  There are many things I won't buy at a store because I don't know if we'll like it or have no idea how to prepare it, but when it's already in the fridge I don't want it to go to waste.  We discovered we love pluots thanks to this new adventure in eating. I learned about avocados, made homemade guacamole, and now have some mushed and frozen just waiting for CJ to be ready for something besides rice cereal.

But today... we had the adventure of artichokes.  I didn't even know what they were when I picked up my basket Saturday.  But I'd heard of artichokes so a quick Google Image search confirmed that is what they were.  Another search led me to a Wiki-How article for how to prepare and eat them.

They tasted okay.

video
The girls love them.

I won't be buying them at the store.

I mean, really, who came up with the idea of eating these things?  At 65 calories per artichoke, I'm pretty sure I expended more calories trying to get the miniscule amount of edible... stuff?... out of them than I actually consumed.

Not exactly the most toddler-friendly meal

This...

...yielded this.
Now, the rest of the meal, which included steamed broccoli from our Basket, and made-up-on-the-fly stir fry of chicken, orange peppers (also a new food for me from Bountiful Baskets), onions, a few artichoke leaves as an experiment, and on my and Kelly's plates mushrooms and water chestnuts, seasoned with soy sauce and Dale's, was much more filling and also a big hit.  Despite their bulging bellies, I also gave the girls fresh cantaloupe from our Basket as "dessert."

I think I could get used to actually having fresh foods on hand. =)  Although, I can live without the artichokes.