2 in a Week?!

2 times in one week?  Watch out.  I may be back....nah.  I just can't commit fully yet :)

I figured I'd update a few more things.  I forgot to mention in the last post that my children are phenomenal at swallowing vitamins now, which really opens up a whole new world of medication and allergy meds (no more grape flavored chewable or drinkable expensive gunk!).  They can be super slow in swallowing the hand-full of vitamins they are currently taking BUT they get swallowed eventually.  I consider that a win.

We are chugging along in school.  Both kids are doing better and better.  There is less fighting me than before.  I also consider that a win.  There is still fighting, to be sure, just less of it.  I changed math curriculum to something called Making Math Meaningful.  It helps them to not only understand math equations but also math concepts (something I'm getting a ton out of myself!).  I think it'll be good in the long run even though they are having to get used to doing a bit more work.  Kale has moved on from studying just the U.S. to now studying different countries.  He and I are currently playing a geography game of North America.  Seriously I've never known more geography in my life.  Sad!  Kate is steadily reading more and more and doing amazingly well.  So proud of her!

On that note, her eyes have improved since starting therapy and we had them rechecked by the eye doctor.  He approved of her going from the bifocals back to just one lens.  We were super excited to see serious progress and we put the new lenses in right away.  Unfortunately she couldn't focus up close on her schoolwork and it frustrated her (and me) so we had to change back to her bifocals.  Bummer.  But we'll keep on trying!

Mark and I went to Branson, MO. at the beginning of October for a pastor's conference.  It was the first time in a long time that we've been away from our kids.  I loved it.  I was so desperate for a break and it turned out to be such a nice time.  We went with our associate pastors, the Quisenberrys, and had a great time getting to know them better as well.  The kids shared their time away with us with both sets of grandparents.  It was so nice to be able to leave them with family.  

On that note, Mark is doing an amazing job as lead pastor.  Honestly I couldn't be more proud of him.  He works hard, loves people, seeks God and has just blown my mind on his capacity to minister!  He's also going to school and working hard reading textbooks and writing papers.  On top of that he has dealt with our issues with Kate as well as my struggles.  He's been a rock and a help and support and I'm super blessed to be married to this man.  I don't normally gush but just when I start thinking about all he's had to do and deal with in the last few months, I'm blown away at how God has faithfully used him.  So awesome.

Two weeks ago I helped lead my first women's retreat as lead pastor's wife.  Overall it was a huge success thanks to the amazing ladies who helped put it all together.  So much of the original planning was done when my mind couldn't focus.  It was so strange to me to not be able to concentrate and make decisions.  Normally I know just what I want to do ;).  But I struggled with reading the curriculum we were using and putting it all together.  The ladies on my team stepped up and took over much to my great delight.  My mind has been coming back and was much better at the time of the retreat.  Honestly the few glitches we had were in areas I was in charge of. We had 55 women come (way more than I thought would come) and my overall goal to have women get to know each other and just have fun together was reached.  It was thrilling.  There was even a ropes course there and we had a blast going down the zip line and trying out different elements on the high ropes course.  I told people that God just filled in all our cracks and the retreat was successful!

Wow.  I don't think I even shared about our trip to Breckenridge over Labor Day weekend.  Sadly I need to get going so I'll have to save that for another post.  That just means there's another one coming!

Avoidance

Haha!  I accidentally published this and then had to go back to edit it.  Talk about avoidance!

I've felt myself avoiding blogging lately (okay for almost 2 months!).  That's the longest stretch I've ever gone not blogging.  So crazy.  I think it's because so much is going on that I'm not sure how to capture it all.  How to explain any of it.  How to convey feelings, emotions, opinions and facts all at the same time.

But I decided to put on my big girl undies and just jump in and see what happens.  There will be lots missing but I'm hoping to at least start back on the wagon cause truthfully I miss being on the wagon...I love reading blogs and seeing how other folks are doing. I know I have a few people who are wondering if I dropped off the planet.  :)

So.  First thing is an update on Kate.  We've been changing our diet over the past 2 months and it's going well.  We've started to hit a groove and have a better understanding of what we're doing (or I have a better understanding of how to cook!).  The kids are still convinced that we are fasting sugar - which is partially true - they just don't know that the sugar fast is gonna be indefinite with treats here and there.  I'll let them live in their happy place a little bit longer.  

Their tastes have seemed to change a bit.  We had grilled chicken salad the other night and they actually all liked and ate it and said yum.  Seriously a miracle!  We still have hits and misses in our discovering how to eat better but like I said, we're finding a groove.

Kate has been doing really, really well.  I have no doubt that the diet as well as the therapy have had an effect.  She will still have an occasional meltdown but the rages have been less and they are far between and shorter lasting.  Nothing like what we were experiencing 2 short months ago!  Praise God for all progress!

Part of our progress was with me as well.  I had been seeing several different doctors in August trying to figure out why I was so exhausted, irritable, hormonal, irregular, forgetful (not able to concentrate on anything for any amount of time) etc... After a few tests (to see if my vitamins were low or my hormones were off) my doctor determined that I was dealing with the physical effects of stress.  She asked if there was anything in my life that was stressful and in between my laughter I cried. :)  I shared with her my struggles with Kate and she was so sweet and listened and said that that was it.

I've been dealing with stress (not just Kate, although that was heightened stress) for a couple years (don't all moms of littles go through that though?) with work, relationships, children, job changes etc...I thought I was handling it fine.  Apparently I was wrong.  My buffer of happiness was depleted.  I could go from fine to not fine waaaaaay faster than before.  Before, I could handle a bit of chaos and not blink an eye - or maybe my eye would just twitch a little.  But in the past few months chaos was causing me to lose my mind, blink, twitch and roll my eyes, as well as send me into tears way faster than I ever had in the past.  I was just not handling my stress anymore.  My reservoir was depleted and I didn't know how to build it back up.

So my Dr talked to me about a mild anti-depressant.  She was concerned that I may be anti-medication (which I'm not...I understand the need occasionally for help from medication).  I decided to try it for a couple months to see if it would give me the extra boost I needed to refill my tank to better be able to handle the stress that is inevitable.  Wow that was a crazy sentence...

Anyway, I've been on a 1/2 dose of an anti-depressant for about 5 weeks now and I really think it's helping.  I feel more like myself again.  Like I can make decisions, deal with meltdowns, not feel like I'm in a fog during the day even though I go to bed early.  More normal (whatever that means). 

I'm hoping to go off of it in the next couple months.  My hope is that my tank will be refilled and I can continue to refill it on my own.  I really think it's made a huge difference in how I deal with Kate and even with the boys.  I'm thankful to have a Dr that didn't give up to find out what the deal was!

Alright, my time is up.  See?  I didn't even hardly get started!  Oh well.  One step at a time.  Hopefully I'll be back tomorrow.   

 

My Hope

This is the end of week one.  We have survived.  A little bruised and battered but we made it.

Overall we have had little tiny improvements.  Not enough for me, but really when looking back, at least it's progress.  And by improvement I mean maybe the fits last 10-20 minutes instead of an hour.  You may think that's huge and I would understand.  Unfortunately the amount of rages hasn't changed and not all rages have only lasted 10-20 minutes.  That's only happened since yesterday.  The rest of the week has been a roller coaster ride.  

It's included tears (from all of us), being late to church, me getting locked out of my house (thankfully I had already put my keys in the car which made Kate mad), fighting over seat belts, menu changes, and lots and lots of prayer.

Which I want to tell you is my hope.  Not the diet.  Not the therapist.  Jesus.  He really is the One I am clinging too.  And He has blessed me!  Blessed me with scripture, with prayer from others, kind friends and family calling or texting to check in, church members who are interceding for us, advice from good friends who care, offers of babysitting so I can get stuff done, flowers from staff members to just make me smile, help to accomplish stuff I just can't get my brain to focus on for any length of time, encouragement from so many...Jesus has shown me His love and care through so many people and I just sit back in awe and wonder.  

All these people have their own lives.  Their own issues.  Their own struggles.  And yet they care.  I am so thankful.  For all of it!  I don't deserve it.  Any of it.  But I know that it's what I need right now.  So I resist fighting it :) 

Friday is our next appointment with the therapist.  We are all looking forward to it and seeing more progress.  Kate even gave me a woohoo when I told her we were going again.  That's good!

I spent a ton of time this week at the grocery store (trying to fill our fridge with non-processed food), googling many foods I'd never heard of, planning menus of things I hoped the kids would at least try, hearing from them "how long are we doing this?" 235 times, having success with some recipes and epic failure with others (like whole wheat waffles that the kids all tried one bite and burst into tears and said they tasted like I put hand sanitizer in them and then promptly threw them in the trash...and went to bed hungry), making lots of make-ahead smoothies for breakfast to put their vitamins in that they can't/won't swallow.  I know it will get better but for now I'm a food preparing machine!  Boy do processed foods cut down on prep work....At least till I figure out how to prep a lot of stuff at once and then use my crockpot!  Baby steps here.  
 
This week we also started to attack the yeast overgrowth in our diet.  Last week we added good bacteria to our guts.  We will keep doing that while we attack the other.  Upon reading more about the symptoms of yeast overgrowth I was blown away by how many symptoms all of my kids (and Mark and I) have. 

Things like:

General Symptoms
Fatigue and a sense of being "ill" and "drained" are the dominant symptoms.  These are often accompanied by irritability, difficulty in concentration, slow mentation, in coordination, and vague feelings of being "spaced-out."  Excessive lethargy may lead to a sense of drowsiness.

Musculoskeletal Symptoms
Vague muscle aches, muscular weakness, pain with or without swelling in multiple joints, and tightness in chest wall.       

Gastrointestinal Symptoms
Abdominal cramps, bloating, excessive belching, abdominal distention, constipation with bouts of diarrhea, excessive mucus in stool and rectal itching.

Ear, Nose, and Eye Symptoms
Sore throat or scratchiness in throat, dry mouth, white coating on tongue and in other areas of mouth (thrush), bad breath, nasal itching, congestion and drip, recurrent sore throats, recurrent episodes of cough or bronchitis, recurrent infections or fluid in the ears, itchiness, burning or tears in eyes, and difficulty with hearing.

 We don't have all of these symptoms, nor do I think this one thing will solve everything, but it gives me hope that I'm on the right track.

So next week's update will also include 2 more sessions with the therapist as well as another week of diet changes.  Hopefully they'll get better and better!

  

 

Therapy

Today I am blogging for therapy.  And to keep a record.  And to possibly help someone else.  Maybe.

I don't have pictures.  I haven't gone and deleted old posts in order to create more space.  Sorry.  If you like pictures I'm okay with you checking out now.  Like I said, this is my therapy.

A quick update on our life first.  Mark is in school.  Very busy in school.  We are learning how to do life with school.  My brother got married last weekend in Denver.  Gorgeous wedding!  We went camping after my birthday.  Kids finished their school year and have 3 weeks off before we start again which gives me time to clean and reorganize and prepare for the next year of adventures!  I preached at church 2 Sundays ago.  Loved it.  Probably won't do it often.  I just don't have the time to prepare.  But it was a great experience.  Sorry for the short sentences.  That's kinda how my brain is functioning today :)

The reason I'm therapy blogging is because the last 4 weeks have been difficult.  I wrote a while ago about living with SPD (sensory processing disorder) and haven't said much since.  Truthfully it was because we'd just learned how to deal with the occasional outbursts.  Kate had figured out to cope or avoid many episodes.  We were smooth sailing so to speak.

--insert my emotional disclaimer --

I never want to embarrass my daughter or ever share that she is a problem. She is an amazing, beautiful child of God that I adore and treasure!  She is kind and compassionate.  Shares with, and takes care of, her brothers.  Loves to snuggle.  Is a great learner.  Has a beautiful, shy smile.  Loves to laugh and sing and dance.  She is a wonderful joy.  I look at the SPD that she deals with as not her because it isn't her.  I get to experience the normal Kate and I get to experience Kate dealing with SPD (which she describes as a bully).  She hates her "buggyness" (that's what she calls it).  She's embarrassed by it.  So again, I never want to embarrass her.  I'd like to share some of our journey with it though.

--end, for now, of my emotional disclaimer --

The past four weeks have been difficult for her (and as a result, difficult for the rest of us).  She has had meltdowns every single day. Today is the first day that I can recall with no meltdown thus far (Praise the Lord!!)  We used to know (for the most part) some of her triggers.  Extreme tiredness.  Hunger.  Over scheduling.  So we did many things to be proactive to prevent them.  But something changed.  We haven't figured out what, but something did.  Now she will meltdown over anything, even if she's eaten and slept well.  

Not only has the frequency increased but so has the intensity.  It used to be that we could send her to her room until she calmed down, then she could come back out.  And she would do it!  She'd go to her room, do her thing (whatever it was) and come back out much better.

Now she refuses to go to her room (so I resort to putting her there, unsuccessfully, myself).  Often times there is kicking and hitting and scratching and screaming.  And sometimes throwing of whatever is near her.  I am usually, but not always, the target.  Man it's hard to watch.  It's gotten to the point where it's difficult to leave our house and it's difficult to vacation or camp.  Not good.

When she's done (could be an hour that this goes on) she weeps pitifully and says she's sorry.  Breaks my heart.  I believe she truly is sorry.  She asks for forgiveness.  She wants snuggles and to be loved and comforted.

During her meltdowns, Jack and Kale assume their defensive positions.  Usually sitting quietly on a couch watching wide eyed or they go to their room to play with their door shut.  They have learned that if they get involved she can turn on them.  Again, when she's done she's very apologetic with them as well.

Yesterday the poo hit the fan (yup, I totally censored by own blog).  I think I'd just come to the end of my rope.  I'm not sure why but I did.  I called Mark crying and he came home early.  I called the pediatrician for help and was disappointed with their answers.  They referred me to more therapists.  I appreciate that but what I wanted help for was how to deal right in the middle of the poo!  How do I protect her?  Me?  The boys?  No one had any great answers.  I felt helpless.  Not hopeless, but very much helpless.

I've come to a place where this just isn't going to fly anymore.  I've been praying for answers.  For wisdom specifically.  I have always said we'll just go down every road until we find answers.  No matter what.  My little girl's peace is dependent on it!

A dear friend told me about a woman who does accutherapy.  She works in a small town an hour outside Colorado Springs.  We saw her on Monday on our way back from the wedding and she gave me hope.  She worked on Kate's ability to cross over from her right to left brain.  I saw progress in just one 2 hour session.  This woman works on creating new pathways in the brain (could even help Kate with her lazy eye!).  She has worked with stroke victims, folks who are depressed and/or suicidal, autistic kids, kids who have major anger issues, sensory kids...and has seen miraculous stuff happen.  Needless to say, we all had more hope (including Kate).

We also were given a CD to listen to by Dianne Craft called The Biology of Behavior.  She has done a lot of research and has helped a lot of kids through nutrition.  Mark and I listened to it on the way home from our time with the accutherapist and again had hope.  I had been scared and reluctant to do a major diet change out of fear.  We already have battles with our kids over food.  I couldn't imagine changing everything!  But she presented a plan in a doable way.  She talks about changing the chemistry of your gut.  It's a 3 month program but you only add or subtract something once a week.  So it's not nearly as overwhelming as I had imagined.  We started the program yesterday {I spent over an hour on Tuesday night, the day after we got back, at the health food store finding the vitamins and supplements we needed}.  She said to expect some changes within the first week.  

Another dear friend who has a daughter that battles the same things as Kate has been on this program and has seen remarkable changes in her daughter.  In fact when her daughter has refined sugar their whole world changes again!  So we will modify what we eat and when we eat it.  Cut out most, if not all, refined sugar.  But I've been pouring over Pinterest (sorry if you follow me and have been annoyed at all my pins!) for healthy, fun, yummy recipes to try and get my kids motivated to eat better.  Some have worked and some haven't.  I've also cut gluten, although not all. Breakfast and lunch do not include gluten and only in small amounts at dinner.  We will see if that becomes necessary to cut out all of it.  I did not cut dairy but that's an option if this other stuff doesn't seem to make big differences. 

Mark and I are joining them.  We both could use an overhaul of our own diets.  I'm excited to experience a difference. (and maybe lose a few pounds?)  But that's not the overall point.  Health is what I desire.  Energy.  Mental focus.  This can help with all of that.  Now we just have to teach the kids how to swallow pills! :) 

Today was a good day.  I'm happy with that.  Learning over and over God's grace for the moment.  I will try and keep you posted on the progress over the next 3 months.  I'm praying for healing for Kate as well as the rest of us (we all have issues don'tyaknow!).

Fun on Friday - 19 & 20 (trying to catch up)

I should've known that when I started trying to post a weekly thing I'd get behind. But I guess that just tells you that life happens and you roll with it. Including Fun on Fridays.

The past couple weeks have been a bit on the insane side. I'll try and fill you in.

After our vacation to Pagosa we came home and hit the ground running. We had Dr's appointments galore! Plus we had to shop to fill up our fridge again. That may not seem like a ton but with 3 kids running errands - it feels like a lot.

Friday morning we had 2 appointments scheduled so FF wasn't quite as fun as the kids would've liked (or us for that matter). Jack and I had a WIC appointment then we headed over to the eye Dr so that Kate and Kale could have their check ups. Kate was being reevaluated after doing eye-patch therapy for 3 months and Kale was just being evaluated.

Kate went first and it was determined that her eye just isn't getting better. It is crossing even with her glasses on and she's starting to not even notice. She'll think she's seeing out of both eyes when it's clear that her bad eye isn't working at all. So the Dr suggested bifocals as our next option. The theory behind the glasses is that they will do all the work so that her eyes don't have to struggle to focus. She's actually got good vision but her eyes compete when they focus and the right one gives up and crosses. So the glasses are supposed to do the hard work for her so that the right eye doesn't give up. Since it's still crossing with her current Rx her glasses need to be stronger. But if the entire lens is as strong as she needs it then she'll lose her distance vision. Thus the bifocals.

After her appointment we went and tried on glasses since the ones she wears she got when she was 3. They've been pieced back together several times and are on their last leg. Unfortunately Kate is not thrilled about having to get new ones. Mark and I love getting new glasses, but for Kate it's a whole new sensation that she's not used to and it's no fun.

We went to try on different pairs but she couldn't stand any of them on her face for more than 3 seconds which was super frustrating. I kept trying to explain to her that they wouldn't feel this way when we got them, that we would adjust them to feel good, that this was to just see if they fit her face and looked good on her. Nope. She didn't care what I said. She just melted down.

So Mark took her and the boys (who had fun trying on glasses)
back to the car to wait while I picked out her new ones. She was just gonna get what I picked. I came back in - almost in tears - and the guy came over and asked if I was ok and if he could help me. I just told him that she doesn't handle new feelings very well and that I was gonna have to find something. He showed me a pair of the frames that have the super bendy nose piece and ear pieces and I was thrilled. They look very similar to her glasses now but they are more flexible and hopefully won't break as much.

If you've ever gotten glasses you know that picking out the frames is just the beginning. They have to measure your pupils and see where you'll be looking through the lens. But Kate wasn't up for coming back inside. The front desk lady thought she was in trouble. It's hard to explain Kate's behavior to people. I'm very thankful that she doesn't melt down in public very often. She looks like a very disrespectful kid that should be punished and honestly if the boys did what she's done they'd be punished. But it's because I know that her mind just isn't processing these things there is grace. She's not allowed to treat me terribly but instead of being punished she gets removed (if possible). To others though, she seems like a problem child, which breaks my heart.

Anyway, I had to run to the car a couple times to do the measurements and the optician even came out once and she allowed him to do a measurement. I'm not looking forward to having the glasses adjusted tomorrow since they've come in. Hopefully I can prepare Kate for what's ahead and she can do the best she can. *gulp*

Kale's eyes are totally fine. He's got great vision. Thank the Lord! Because Jack just had his 3 yr check up and the pediatrician recommended getting him checked at the eye Dr. She said it just may be the shape of his eye but he may also be beginning to show signs of having what Kate does (because it is genetic - although we can't figure out who else on either sides of our family has dealt with this). That appointment isn't till October but I'll let you know when we figure it out.

After the appointments we went to Smoothie King and got smoothies. And that was Fun (kinda) Friday :)

This past week our washing machine broke so the repair guy had to come on Friday since every other day was booked already. It turned out to be ok since neither Jack or Kate were feeling all that well. It turns out that Jack has some fluid in his lungs and the Dr was concerned about walking pneumonia. He did get a fever that night and we put him on antibiotics yesterday so hopefully he's on his way to recovering. He acts ok when he's on Tylenol. But when it wears off you can tell he's just not himself. Kate's just a bit congested. She seems better this morning.

So our Fun Friday consisted of snuggling and watching a movie. We did teach the kids Skip-bo and they had a good time. Gotta prepare them for Cooper game nights!

The whole family is in a wedding this weekend so there are several things to prepare for this week. We've been doing pre-marital counseling for this couple as well as another one so we had a couple nights each week spent doing that. We also did the River Run for Orphans - an event our church is very involved with putting on. I'll have to post a couple pictures later.

I'm home from church at least for the first service this morning. I'm hoping to get in for the 2nd service. I hate missing church. But Jack and Kate, while feeling better, can't go in to their classes and risk getting other kids sick. I can't be that mom! So they'll stay with me. They don't really enjoy it though and I didn't want to force them through 2 services. After church we have something for new people to meet the staff so we'll try and attend that. Then we have one more counseling session after that. *whew!*

Glad we're home for a bit. Even though that wasn't everything, I'm sure you're done reading my picture-lacking post. Hoping for some more time soon!

Living with SPD (Part 4) P.S.

I know I said yesterday that I was done (thank you for all your sweet comments by the way -- it was very encouraging) but after rereading it I felt like I wanted to add just a couple things. Like what I've learned from all this.

This journey has definitely had it's difficult moments, things and emotions that I have never experienced before. It took me some time to come to a place to be able to blog about it (I can talk with people but I wasn't sure about how to blog about it). Many emotions that I had to deal with personally. I also prayed that my story would not shine a negative light on my daughter but instead educate, encourage and maybe even give hope to other parents no matter what their children are going through (not necessarily SPD). It's been a humbling, learning, growing process for all of us. And while I had moments of not liking my daughter I never had moments of not loving her. In fact God gave me even more compassion for her and her emotions as well as insight to His love for me

It was when she was melting and out of control that would make me want to tear my hair out, and at the same time I'd be hit with this feeling of overwhelming love for her. I'd feel so awful for her inability to feel and control herself. I felt like she didn't like the way she was behaving but she didn't know what to do about it (much like I was feeling). I saw her as a child crying out for help because she was lost, scared, afraid and unsure.

Much like I am with God. I can see Him watching the choices that I make and not liking them but Him always loving me and having compassion for me knowing that I'm lost, scared, afraid and unsure and how He desperately wants to help me if I'll let Him. A God moment(s) for me for sure.

I also learned that it's okay to get help. Many times we just don't understand that this behavior/symptom etc...isn't normal because it's just always been that way so we figure every kid must deal with this. Honestly I probably wouldn't have sought help if my folks hadn't suggested that something else may be going on. It gave me a new-found hope that maybe this wasn't supposed to be how my life was always going to be. I dealt with the thoughts that I should know my child. I should be able to take care of this, I just need to fix myself and be a better parent (can you say pride?). I finally realized that this wasn't something I could fix. And I needed to be humble and listen to others who knew better. Yes I know my child, but, I can't possibly know everything. And I didn't want my parenting pride to keep my daughter from having a happy childhood.

It wasn't always easy. So much of what she was doing just felt like she was misbehaving or I was doing terrible parenting. I was worried that the Drs would think I was a crazy parent who was trying to find some reason for her issues - anything other than my parenting! I knew there was a very real possibility that I could be doing things wrong and let me tell you that I am not first in line when it comes to getting criticism! But I realized that I was willing to do anything - including being humbled - to help my daughter. A huge revelation to me.

God was willing to do anything (and he did everything) to help His daughter - me.

I learned that there's always someone else who deals with similar things. You are not alone. You just need to be willing to talk about it and open up. It helps others open up as well.

I learned that there is a season for everything and God will use every circumstance in our lives to teach us how to love each other more, love Him more, and love ourselves. He doesn't "do" stuff to us but He will use our stuff to bring Him glory (if we let Him). And this year has been a year of difficult circumstances that I have had opportunity to learn and grow from and hopefully bring Him glory. And because of what I have learned, I am thankful. I know that my relationship with God is much different than what it was a year ago. Better. Not perfect but better.

On another note, we have started to see, as a family, a Christian chiropractor in town. Another road we will walk down to see where it takes us. There is hope that with his help, Kate may see even more improvement in her SPD as well as improvement in her eyesight. It may even enable her to go off her allergy meds which would also be a blessing. I will keep you posted on her progress. This is a 9 month long commitment! So here we go on another adventure :)

I hope that someday my daughter will read this blog/journal and see the tunnel that we walked through and see how God did miracles in both of our lives. And again, thank you for your encouragement. It really is a blessing to me!

Living with SPD (Part 3)

Hopefully I can wrap this up on this post.

We called the occupational therapist (OT) and met her in early August. Her name was Sherri and she was amazing. She totally has a heart for kids with SPD and she was very knowledgeable. She wanted to see Kate 3 times a week for 2 months to assess her, build a relationship, treat her, encourage her, teach her and teach us. So we did just that.

The first few weeks were interesting. Kate did really well and adored Ms Sherri. She spent time getting to know Mark and I and how we parent and building her baseline with Kate (seeing how much stimulation she could handle). Kate responded really well. In fact we noticed a change quite soon.

Sherri gave us exercises to do with her. She let us know why she'll react certain ways sometimes and not others (one of the biggest challenges with SPD is that you never know what exactly will trigger a meltdown -- one day it's one thing but it'll be completely different the next). She showed us, and Kate, techniques for coping with sensory overload. It was incredibly helpful and that's an understatement. We spent 2 solid months, 3 days a week, visiting Ms Sherri. It was challenging to entertain Jack and Kale in the waiting room for 45 minutes each visit so whenever I could pawn them off on someone, I did :) But we made it through and I'm so thankful we did.

As for when and where she has a meltdown, the psychologist told us that it's kinda like us wearing an itchy sweater. If we leave for the day wearing a sweater that we eventually find out is incredibly itchy, we'll tolerate it (meaning we won't be scratching our pits and bellies like dogs) until we can come home and change into something else. Same with Kate. When she's out around people she's either distracted or has a much higher tolerance for the over-stimulation then when she's home.

SPD is different with every kid which is also why it can be hard to diagnose and treat. There are kids whose tolerance level is zero no matter where they are or who they're around. There are kids who can handle itchy stuff but jumping on a trampoline makes them bonkers. Just as every child is unique, so is their SPD.

Sherri let us go in October. Actually when Mark and I got back from our trip to San Diego I got a phone call from the physical therapist's office telling me that Sherri no longer worked there. Honestly I cried. I felt a little foolish but then again, this woman helped change our lives! She helped me actually like my daughter again! We couldn't just never see her again!

So I stalked her. Well I didn't totally stalk her but I had emailed her once before during Kate's treatment so I had her email address so I wrote her. I told her that if she had moved to a new practice we'd follow her. We were so grateful for her work with Kate.

She responded that she was looking for another PT office to work from but she thought Kate was doing really well so she didn't think it was necessary to continue treatment (we were going to evaluate anyway when we got back from SD). I told her that I dreaded telling Kate. That Kate had loved, loved, loved going to play with her and had already been asking about her. Sherri then asked if we could meet and she'd tell Kate. I thought that was a fabulous idea.

So we baked her some cookies, drew her a picture, and met her down at the train station one night to say goodbye (or see you later). It was wonderful and it made me love Sherri all the more. She gave me her cell number and said that if Kate was struggling in the future to call her and she'd be happy to help us again. So thankful for that!

SPD isn't curable but it is treatable. Sherri told us that Kate may never show any symptoms ever again OR she may, in the future, if something in her life overwhelms her. She thinks Kate started displaying bigger symptoms because our year was so very stressful. With losing our baby and my aunt and then losing our dog...well Mark and I have faced numerous situations. And of course that affects your children. If/when it happens, Mark and I will be much better prepared now that we've walked, and continue to walk, this road. We've blown it many times with her. At this point we know that if she's tired, been going and doing too much for too long, or is really hungry, she is more likely to melt down. Routine, alone time and calming exercises seem to help keep her a balanced-almost-5-yr-old. It's when we over-schedule her or not schedule naps/quiet times that we have much more of a problem.

I hope that my 3 day saga gave you a little insight into our world and our daughter. There are, of course, so many stories I could've included but I figured 3 days of reading was plenty :) Thank you for sticking it out with me!

I'm thankful to have been on this journey. I'm thankful that God has shown me one "key" to my precious daughter. But more than anything, I'm so thankful to have my sweet baby girl back and we can go on our mommy/daughter dates without meltdowns!

Living with SPD (Part 2)

The final straw was a planned outing I had with Kate. I figured we needed a mommy/daughter date. Some sweet time alone so we could focus on each other. Have fun together instead of power struggling and being distracted by the boys. So we planned a date to go get a haircut (the beauty salon as we call it) then go get ice cream or something. The goal was to just be together.

We made it to the garage. Seriously. We got in the car and something was wrong with the car seat and the seat-belt and it led to a full on meltdown. I tried for 20 minutes to calm her down, fix her seat and make this work. I couldn't do it. I left her in the garage and came back inside.

Mark asked me what I forgot, assuming that I had driven off and turned around. I was crying by then and told him that I couldn't do it. I couldn't take her to town and risk her losing it while getting a hair cut. I couldn't be around her. At all.

Mark went out to the car and spent another 20 minutes trying to calm her down. He wasn't successful either. So we carried her inside and put her in her room {kicking and screaming} in hopes that she'd wear herself out eventually. I decided to go run an errand and have some alone time.

As I was driving and crying I started praying. I really felt so helpless and lost. I loved my daughter. I desperately wanted to like her too. I kept saying to God that there had to be a "key" that I was missing. What is the "key" to my daughter? What do I not see that I needed to? What questions have I not asked that I need to? Answers did not come right away but by just praying I was already feeling better. I was feeling unexplainable peace.

I did my errands and came home (almost an hour later) and Kate was still in her room. Still crying. I think this was one of the worst melt-downs I had seen. They are usually bad but not like this.

I can't remember the exact time-line for this next part but I know it wasn't too long after this melt-down, several conversations with my parents and even Kate freaking out about her car-seat with my parents in the car, that my mom called and told me about Sensory Integration Disorder (what I later discovered is now named Sensory Processing Disorder). She'd found some info online and wondered if this is what Kate was dealing with.

Truthfully, I was at a point where I was ready to go down any road to the very end just to see what might be the problem - even if it was me and my parenting - I was ready for change. I was relieved that my parents had observed Kate's meltdowns and didn't think it was me. I can't tell you how I felt after hearing that. To have a glimpse of hope that you alone are not screwing up your child is amazing.

My mom also mentioned finding out about any potential side-effects to singulair (which Kate had been taking for allergies this whole time). So I started researching and asking questions and making appointments with different Drs.

I started with our allergist to see if her medication could be affecting her. When I told him what we were dealing with he suggested SPD and recommended a psychologist to meet. I called the psychologist and our pediatrician and had meetings with both of them. After hearing our story they both, independently, said SPD. So I'm guessing, at this point, that the "key" might be learning more about SPD :)

A definition I found:
Sensory Processing Disorder or SPD is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body (visual, auditory, tactile, olfaction, gustatory, vestibular and proprioception). For those with SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organizing, problems with doing the activities of everyday life (self care, work and leisure activities including work and play), and for some with extreme sensitivity to sensory input; sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion. There no known cure, however, many treatments are available.

Our pediatrician gave me the name of an occupational therapist to call (one that she herself had used) and that began the adventure down this particular road. Stopping here to give my hands a rest. I'll pick this up again tomorrow. Hang in there! Thanks for sticking this out!

Living with SPD (Part 1)

I realize that I haven't yet filled you in on anything going on with my daughter. I don't know how many of you are really interested in all of this but I'd like to take a bit to give you some information if you don't mind reading along.

It's hard to know just where to begin this since I think Kate's dealt with it her whole short life. When she was a baby she hated being swaddled (Kale was wrapped tight in a blanket till he was 6 months old!) and has always been a bit particular about what she wears. But I attributed all of that to her just being Kate and there was nothing wrong with that. I just needed to figure out what worked for her and what didn't. A challenging process for sure.

About a year ago we took Kate to an allergist [after she'd been sick so often and her mood was ever-changing] who diagnosed her with several different allergies and gave her some medicine to help. And they did help. She slept better and felt better (rarely got sick that winter) and behaved better. We thought we had things figured out. Ha!

Starting that next spring (last April/May) we noticed more and more behavioral issues. She would get angry over clothes and the way they felt. We had many fights over what to wear to church(or anywhere else we were pressed for time to get dressed for). We had long given up dressing her the way we wanted to dress her. We {both Mark and I} had visions of a darling little girl with pigtails and dresses. She had other ideas. And once I gave up my visions, I saw that we did have a darling little girl with her own unique style and I began to really love seeing what she was going to wear that day. Many days she doesn't match. At all. She'll also wear shorts in winter and pants in the summer. She'll layer clothes that you would never have thought to layer (like tights under cut-off jean shorts). That girl's got a personality all her own. I thought that letting go of my expectations and freeing her to be her would solve our problems.

Nope. Not that it didn't help - it did. BUT it didn't solve everything.

Then she started getting upset about her car seat being crooked and no matter how hard we tried to fix it it was never right. She'd get upset about how we brushed or fixed her hair. It was too tight or too loose or too crooked. Music was too loud. The sun too bright. We couldn't snuggle her just right. Her glasses were too tight. In fact everything was too something and you could bet that it wasn't too good.

We had arguments about her screaming and her behavior. It wasn't that I was upset that she didn't like something, I was upset because everytime she didn't like something it'd turn into a full-on meltdown temper tantrum. She'd kick and scream and hit me because her carseat was crooked or her seat belt "wasn't working". There were time-outs, spankings, lost privileges etc... I was pulling out every parenting trick I could think of. And things just weren't changing. She'd be melting for me and fine for everyone else. Church was fine. Small group was fine. Playdates were fine. Even visiting family was fine...for awhile. Eventually she started melting with family members.

I let so many things go in an effort to make things better for all of us. Fine, we don't have to fix your hair. Fine, I'll turn the music down. Fine, change your clothes. Fine, you can sit on my lap and put my hands just where you want them. But there were other things I couldn't compromise on. Car seat for obvious reasons. And her glasses. Without her glasses she is cross-eyed and she can lose her sight. I was at a loss at how to fight over those uncompromisable things. All the disciplining I was doing wasn't changing a thing and the definition of insanity is doing the same things over and over and expecting different results. I was seriously going insane!

There were days that I'd cry just as much as she did. Days I'd spend in prayer (all day!) begging God to show me what to do. I battled insecurity, self-doubt, anger, frustration and guilt (guilt because I didn't like my own child and believe me that tears you to pieces!). I'd worry I was being too strict. I'd worry I was being too lenient. I'd worry that I was being unfair and harsh. I'd worry that I just plain ole sucked at parenting and my children would end up....I don't know...miserable, lost, unhappy....

I feel like I need to stop here since this is already so long. If you've made it this far I'm proud of you. I will continue this tomorrow!