SPD, TS, ADHD

Each day that goes by it seems like I love my kids more than the day before.

It also sometimes seems like they make me more gray and crazy than they did the day before!  😉

In August 2012 Caleb was diagnosed with Sensory Processing Disorder (SPD), just before he started kindergarten.  He has been getting occupational therapy (OT) ever since.  OT has helped him SO much!  Before OT he couldn’t get a hair cut or get his nails cut without us holding him down and him screaming and crying like you’ve never seen!  Now, he sits in the chair to get his hair cut ALL BY HIMSELF and even lets her use the clippers!  Nail cutting is still tough, but is LEAPS AND BOUNDS better than it used to be!  We now have tools to help his body to regulate better.

But, there were still many issues that Caleb was struggling with both at home and at school.  He does very well at school with the tools he has, but because he works so hard to hold it together at school, he lets loose at home and has a difficult time.  There are many things about SPD that can overlap with Autism (ASD) symptoms.  There was just something in my “mommy gut” that said SPD wasn’t addressing all of Caleb’s issues.  He was still struggling and I wanted to figure out why and what we could do to help him.  No loving parent wants to see their precious child struggle when they don’t have to!

We decided to get him tested for ASD.  I was really on the fence whether or not he had it, but it was the next step.  And after this testing I could know for sure either way.  After the testing we were told he is NOT Autistic.  He has some indicators, but not enough to qualify for that diagnosis.  I finally had a definitive answer about ASD.

But, then why is he still having so many struggles?  Well, that answer came from the ASD testing.

Caleb has Tourette Syndrome (TS) and Attention Deficit Hyperactivity Disorder (ADHD).  I still have a lot of research to do to educate myself about TS, but after hearing the professionals explain what TS is and how it affects my sweet boy, it made so much sense!  Caleb has been having tics for at least 1.5 years but I didn’t always know what they were.  They have been getting worse and worse – some to the point that they are hurting him now.  I thought TS was just tics.  But that’s not all.  TS affects focus, emotional regulation, impulse control, and many other things – all of which Caleb has huge struggles with.  The ADHD affects his hyperactivity, focus, impulse control, etc.

I feel very mixed about all this.  I am SO relieved to have some answers now.  We have a better understanding why he does what he does and are now able to pursue how to HELP him with this.

But my heart still hurts hearing what is happening inside his little body, how his brain is misfiring and seeing the affects through his tics, his behavior, etc.  He is such an AMAZING, loving, sweet, sensitive, special kid….but that gets covered up.  He has been feeling bad about himself, believing he’s a “bad kid”, saying that we “hate him” when he misbehaves, that he will “never be a good kid”….all things that break my heart into a million pieces!  No 6 year old should feel like that about himself!  NO CHILD should feel like that!

So now I start the journey of learning more about these conditions and ways to treat them.  I also need to deal with the grief about this news.  I just don’t want my sweet little ones to struggle or suffer at all.  I know, in my head, that we ALL struggle, that I cannot protect my babies from everything in the world.  But, gosh, I sure wish I could!!

None of these diagnoses change who my precious Caleb is, nor does it change my love for him.  It WILL help me better parent him and help him to thrive and grow into the amazing man God has created him to be!

First Birthday, First Grade, First Holidays Alone

I’ve been silent here for a while.  A LONG while.  It’s been hard to not write, to not process through words on a screen.  But I wasn’t ready I guess.

Tonight I am more ready.

We are all looking back on 2013, reflecting on all we’ve done, seen, experienced these last 365 days before at new year starts.

2013 brought the first birthday of my baby girl!  It was quite a celebration considering all the difficulties of her first year!  In past centuries, and even in past decades, she wouldn’t have lived because of her heart defects.  But God gave us wonderful doctors, medicine and His healing and she was able to celebrate her first birthday healthy, happy, and full of energy!

Caleb started first grade!  It seems like we were just watching HIM smear birthday cake all over HIS one year old face.  But, he is now 6 and doing so well in first grade.  We have learned a lot about him and his Sensory Processing Disorder this year, as well as having some great tools in place to help him be successful at school.

We got our first snow blower this year!  After years of living on a long corner lot and shoveling…and shoveling….and shoveling, a friend was selling her snow blower and we grabbed it up!  How nice that has been this winter already!

But the most recent first has been spending my first holidays alone.  Without the man I’ve (literally) spend half my life with.

Tim and I separated the week before Thanksgiving.  Some things came up in our marriage that necessitated taking some time apart.  I don’t know how this separation will end at this point.  God hasn’t shown me that yet.  I really wish He would, but He knows this is a process and He can’t show me everything right now.  And I hate that.

This time of year has always been about family for me.  Celebrating together with all the family we can drag together as often as possible.  Eating too much food together.  Sharing gifts with one another.  As kids we could always count on seeing our cousins several times in these last months of the year.  We would play with our new Christmas presents together, or model our new clothes as we got older.  We had silly family traditions we enjoyed.  But family was always so central to this holiday season.

I still saw my family this season.  We still exchanged gifts.  We still ate too much together.

But it was so different for me.

Tim wasn’t there.  For the first time in 17 years, Tim wasn’t there.  We started dating in October and he came home with me for Thanksgiving that next month.  And we’ve been together for every holiday since.

But not this year.

And I’m really having to wrestle with God again.  I wanted so badly to FEEL His presence.  To keep Him the focus of Christmas.  To really concentrate on WHY we are celebrating this time of year.

But there were so many other emotions getting in the way.  So many other questions in my brain.  So much stress.  It seemed the more I wanted to feel close to God, the farther away He felt.

My heart and my head are in great conflict.  My head “KNOWS” the Truth.  My head chooses to believe that what the Bible says is true, that God loves me, that He has not left me, that He is with me and walking through this pain with me.

But my heart denies it.  My heart needs God to prove Himself in some way.  My heart doesn’t trust God right now.

I’ll be honest.  I’ll be vulnerable.

I am having a hard time trusting God right now.

I WANT to trust Him.  Because I feel so alone.  I want to FEEL His presence with me.  I want to let Him in.

But I’m scared.

Because as if all this wasn’t hard enough, Tim got in a car accident last night and his car was totaled.

HOW could a loving God add THAT to the stresses right now??  REALLY?!?!?

But, again, I know in my HEAD that God is not doing this TO me.  Because, really, Tim really could have been killed in that accident.  But instead walked away with aches and pains but no (to my knowledge) serious injuries.  God WAS protecting him.

But, still, REALLY?!?!?!?!?!

I’m taking a huge risk writing this and putting this all out there.  But, maybe, someone else out there is wrestling with God.  Wondering if there is a God.  Feeling far from Him during this time of year.  Maybe your head and heart don’t agree.  Maybe you feel lonely and alone.

I just want to say, you’re not alone.  Someone else out there feels like you do.

In the Jewish culture, after someone dies, family and friends gather around those who are left behind in mourning and they sit shiva.  They don’t offer advice.  They don’t try to make the grieving person “feel better” or tell them it will all be ok.  They just sit.  They are just there.  If the person wants to talk, they listen.  If they want to cry, they offer a tissue.  If they want silence, they sit in silence.

I don’t have all the answers.  I probably don’t have any answers you want because I KNOW I don’t have any answers I want!

But I will sit shiva with you.  As we grieve.  And wonder why.

If you’re willing, share along with me.  You don’t have to, and you don’t have to share more than you want.  But I would love to hear from you.

I’m hurting too.  A lot.  But I’m going to keep believing, at least in my head until it gets to my heart, that God is sitting shiva with us.

 

Confessions of an SPD Mom

SPD stands for Sensory Processing Disorder.  What is SPD you ask?  Here is a SHORT simple video that gives a good simple explanation:

Caleb has SPD and has been going to Occupational Therapy (OT) every week for just about one year now.

Before OT he couldn’t get a haircut without screaming, crying, basically being in terror and saying his haircut hurt.  I had to sit in the chair with him on my lap and hold him down the whole time.  During his last haircut he didn’t shed ONE tear, sat mostly still and even let her use the clippers!!  The change is unbelievable!

Before OT he couldn’t get his finger or toe nails cut without thrashing, screaming, crying and telling us we were hurting him.  It took TWO adults to hold him down and cut his toe nails (and usually ended with Caleb AND me crying!)  Last night I cut his toes AND fingers without ONE SINGLE tear and almost no kicking or thrashing!  I was so proud of him (and he was proud of himself!) that I gave him a piece of candy even AFTER he had already brushed his teeth!  😉

In addition to the physical difficulties his SPD affects his brain functions.  His brain has a hard time with the higher brain functions.  So when something is different (out of routine he prefers) or he is told “no” or plans change he goes straight to tantrum.  He has a hard time understanding that (for example) “you can’t play that game right now, but in 5 minutes I will sit down and play with you.”  He can’t think through the “not now but later yes” part of the situation.

He has a very difficult time with new food.  Even the same food but prepared differently.  It’s frustrating to only be able to prepare the same several meals all the time.  For example, mac and cheese HAS to be only the Kraft macaroni and cheese.  He has had the same lunch for the last 4 years!  OT, and growing up, has helped him be a bit more adventurous and try new things, but it is a STRUGGLE!

There are so many things that OT has helped him with this past year.

But there are still so many struggles!  So many difficult things to deal with every moment of every day.

Here’s the confession part.  I feel guilty all the time.

Summer vacation is almost done.  I feel so guilty saying this, but I’m just being real….

I’m actually excited for school to start again!  I HATE saying that, but summer vacation has been pretty tough.

Caleb doesn’t play well on his own (unless it’s video games).  He doesn’t do well with imaginative play.  He needs to be entertained or have me play WITH him.  But he also has such a hard time focusing on anything for longer than a few minutes.  So, we pull out the play-doh, but he’s done with it in a few minutes and ready to move on to something else.  I run out of ideas quickly!

I’m also not good at structure and routine.  School is good for him in some ways because it provides that structure and routine that is hard to get at home, especially with a little sister around.

I need to be doing so much more therapy with him at home but it’s so hard to fit it in.  Adara is getting speech therapy and OT as well as Caleb getting OT.  So they both have things I need to do with them along with diaper changes, meals, naps, cleaning, grocery shopping, playing, etc.  It’s frustrating to me when I get to the end of the day and see how much I did NOT do with them!

And the NOISE!  OMG THE NOISE!!

Part of Caleb’s SPD is needing input in his body all the time.  One of his big issues is craving input in his mouth and face.  So he makes noises.  ALL. THE. TIME. He goes through phases of what noise he makes.  Just recently it was a farting sound on his arm.  Now it has switched to a weird throat sound.  He also yells a lot, sometimes just talks loud.  But lots of yelling.  And Adara wants to be just like her big brother, so she’s taken to yelling a lot!  Some days the noise of a day just puts me over the edge!!

I feel guilty for being annoyed by him and his issues.  I feel guilty for not helping him more.  I feel guilty that I want him to go to school again.

And I feel guilty for thinking about how this affects ME.

Because it’s HIS poor little body that is dealing with all this!  HE is the one who has all these things firing in his brain and his body making him hyper and need to make noise and not able to sit still or focus.  It’s HIS brain that is misfiring in his body.

And then my heart breaks for him.  I wonder how this will affect him throughout his life.

As much as I would like for him to go back to school, I fear for him.  I wonder how the other kids in school will deal with his noises.  I wonder, as he gets older, what kids will say when he sits too close to them because he needs to feel someone next to him to tell his body where he is in space.  I wonder if kids will tease him because he needs extra tools and allowances in class to help him focus on his work and he still doesn’t get as much done as the other kids.

I pray God protects his sweet little heart from the whispers, the names he might be called, the glares.  I pray God helps his body to regulate, to recalibrate so he can have less challenges.  I pray that as he grows up he will be able to find what helps his body feel better and be able to do that for himself.  I pray that God uses this in his life to touch others, to show others God’s unconditional love and acceptance.

SPD is tough for the whole family.  But I don’t want to get so focused on how hard it is on ME and forget how hard it is on HIM!

God has blessed me with two amazing kids who need a little extra help with things.  He created them so special, beautiful and wonderful.  And just right for our family!

OT FUN!

Caleb had his first OT (Occupational Therapy) session last week.

I took some picture because I like to document this stuff.  I took pictures of Adara’s procedures along the way with her heart issues too.  I think it might be neat for them to see their journeys one day.

Caleb did great at his therapy.  It’s play based, so he loves it!  That makes me very happy!  In fact, the next day when I picked him up from school he asked if we could go play with Miss Rachel!

She worked with him on a few different things to help sort of “recalibrate” his body.  I of course don’t know what all of it was for or what it was doing, but she filled us in as much as she could while still keeping her attention on Caleb.  He just sees tons of toys and fun so he bounces from one thing to another without her keeping him very focused!

It was nice because Tim was able to be at this one so he could see some of what goes on.

I have my moments of this being hard to deal with.  It’s really hard to figure out which behavior is due to SPD and which behavior is due to him being a 5 year old boy and needing discipline!  I’m trying to read and research as much as I can to learn how to help him and his body get what it needs so he can function better and at a calmer level.  It really is fascinating to learn how the body works.  God made us SO INDESCRIBABLY intricate and complex!

In many of the pictures you’ll see him wearing headphones.  They are for the therapeutic listening.  They play very scientifically engineering music used to help calm the kids and put things back in order.  One of Caleb’s issues is his vestibular system.  This is the inner ear.  The music helps to put things back where they’re supposed to be in a way.  So, he wears them for much of the therapy.  The music coupled with the physical activity works together.  Like I said, fascinating!

His absolute FAVORITE thing to use….the BALL PIT!! He asks to go in there many times! 🙂 That’s where he gets to go when he needs a break!

 

This is him rolling on scooter boards. His body gets out of whack when he lays down so this works on that and works on his pushing and pulling with his arms.

 

What boy doesn’t like to punch an inflatable punching bag?? He was showing Miss Rachel his tae kwon do moves!

 

He has to work on crawling down the stairs facing forward. It’s interesting what our bodies can do easily and what takes more work.

 

This was interesting too! It’s a spinning board. Something about laying on his side like that and spinning (slowly) to each side helps calibrate his body. I couldn’t believe how calm he was when she was doing this! I don’t think I ever see him this still and calm besides when he’s sleeping! It was amazing.