Progress

We made it!  We made it past the dreaded week 4.  This week, so far, she has been emotional.  Instead of screaming she is now crying.  It's not an angry cry though, it's a sad cry.  I would much rather deal with that though.  I've also felt like she has become much more affectionate.  She gives random hugs.  She seems a lot happier.  Our relationship is mending.   I don't feel like I have to constantly be nervous if she's going to be angry or mean.  It's been nice.  We definitely have seen these behavioral changes in her for the better.  Now for the academic changes..

             Last week, Kalie brought home her comprehension test and on it was the letter 'B'.  I was shocked.  And so excited.  That was the first 'B' that she has gotten on a comprehension test!  I had gotten so used to seeing the 'F' on there.  She was so excited too. 

    They get their tests back every Monday.  I was so anxious to look at her test this Monday.  You can imagine how excited I was when I saw an 'A' on the front.  We had just arrived at Brain Balance when I looked at this so I had to fight back the tears.  I gave her a high five and told her how proud I was of her.  I could tell that she was proud of herself which made me even happier.  After celebrating her good grade we went in to Brain Balance.  She went off and did her thing and I met with Brianna, one of the teachers there, to go over her progress so far in the program.   In her visual she has gone up in all of them and met her goal on one! In her hearing she has met her goal and gone up.  In her touch she has gone up, her core strengthening rocketed up, and her balance work ha exceeded the goals.  We found out that she's in second grade math right now.  She will actually sit down and read a book.  She's remembering what she is reading.  It's just amazing. 

       I love seeing progress.

Trials

The other day I had two different phone conversations-one with my sister and one with my grandma.  In both conversations trials came up.  My sister mentioned that she bets I can't wait for this trial to be over and will look back and wonder how I, we, even made it through.  My grandma reminded me that we have to remember that things will work out but only on the Lord's time.  Both of these statements are so true.

 

I know, but always forget, that the Lord has different timing for us than we might want.  For some reason, we are going through this trial.  For some reason, Kalie is going through these struggles. In my conversation with my grandma she also mentioned how sometimes we wonder if our prayers are even being heard because we want something done right away and it doesn't happen. I don't know how many times I kneeled down (in my closet because it's the quietest place in my house) and prayed and cried and then felt that hopeless feeling.  Maybe I was doing something wrong?  This was when my faith started to shake a little. 

 

When I was at my lowest, I was really low.  I felt disconnected to everyone, indifferent to everything.  My spirits were low and for a second, my testimony faltered. Everything seemed to be falling apart. One night, my friend posted a video to her Facebook and it hit so close to home.  I didn't even want to watch it at first because I knew what I would hear and see would be true words and it would make me cry and reevaluate everything.  I didn't feel like doing that.  But as soon as I was alone I watched it.  I would invite you to watch it too. (Get some tissues too)

 

 

"And that the Lord has promised 'I will not forsake thee'" "He has promised us angels on the left and on the right to bear us up, and he always keeps his word, His love is unfailing." 

I still cry every time I hear those words.  How could I ever doubt it?  How could I think for one second that our family was being forgotten?   To answer my sister's question.  I know how we are making it through this trial. Through our faith, through our knowledge that we our children of God, that Kalie is a child of God, and he would never forsake us or forget about us.  He wants us to succeed and make it through our trials. That's why he gave us "angels on the left and on the right to bear us up."  I have received an overwhelming amount of support through all of this from friends and family and that support is bearing me up so that I can bear Kalie up through it all.

 

 

Week 4

When we first met with one of the teachers at Brain Balance, we were told that around week 4 we would notice a big change in Kalie.  A big change, as in it would seem like she is going backwards and acting out worse than before.  They have seen it in almost every kid that they have worked with. She told us its because there are parts of the brain that have never been stimulated and now that they are being stimulated, it's trying to balance itself out.  It's a good thing. Needless to say, I have been prepping myself mentally for this infamous 'Week 4'.  And guess what? We're on week 4.

 

The past couple of days have been pretty dang challenging.  I have been having flashbacks to a year ago.  Remember when I told you that when she was in kindergarten we had to hold her down so she wouldn't hit us or kick us?  That's where we are right now. She is defiant, mean, saying hurtful things and screaming at us. When we hold her (gently) she screams "You're hurting me!" and kicks and tries to pull our arm to her mouth so she can bite it. Now a year ago, I would've been able to hold her but would've been so angry by the time the whole ordeal was over that I wouldn't want anything to do with her afterwards.  It took me along time to cool off and it took her, sometimes, up to 30 minutes to calm down before we could let her go.  I'll give you an example of one of her recent 'Week 4' meltdowns :  So yesterday when she got home from school we started our normal routine.  I asked her to do her homework and she got it out and started doing it.  She misspelled one of the words so I just let her know that it was wrong and asked her if she wanted me to help her erase it.  She yanked the pencil out of my hand and then grabbed her homework and moved to stand at the desk.  When I walked over to her she ran to the counter. When I walked over there, I asked her if she would go sit at the table so she could do her best work. She yelled "FINE!" and sat down.  She then proceeded to write her words sloppy and dark, pushing really hard with the pencil.  I took the pencil and asked her to do her breathing.  It went downhill from there.  She just started saying mean things and stupid this, stupid that.  Then she tried to get down. I knew what would happen if I let that happen.  She would run to her room, slam the door as hard as she could, and start screaming in her room.  I didn't want her to lose control that easy.  I gently, but firmly, put my arms around her and kept telling her to breathe so her brain could think things through.  The whole time she was fighting me- bit me once, screamed in my ear "NO! NO! I HATE BREATHING!".  It took about 3 minutes and all of the sudden she stopped.              I gradually released her.                    She breathed.     

After about a minute of breathing, I asked her, quietly, if she was ready.  She said " Can I please have a tissue?" and got back to work, writing everything  neatly.  A year ago, I would've been so mad and would be seeing red.  Yesterday, I was sad for my daughter.  Hearing her scream 'NO' and thrashing around uncontrollably brought tears to my eyes.  How I wanted this to be over for her.  How it pained me to see her struggle like this. 

 

They weren't kidding when they said there would be a change this week.  We are enduring though. It's hard to tell people about this 'Week 4' because I'm worried that they are thinking this isn't going to work.  Believe me, I wondered the same thing.  Then I think of all the things that have improved. Her reading, her confidence, her ability to calm herself down.  I mean look at yesterday?  She stopped her tantrum 20 minutes earlier than before.   Something is changing.  Something is balancing out.  Slowly, but surely, we will have our happier, healthier Kalie.

Patience is a virtue

One thing that I've always admired about my dad is his patience.  I always tried to have his same patience growing up.  I could wait in a line forever.  It was like a laid back kind of patience that might be because of our Polynesian culture, who knows, I just know that it was a trait that I wanted to have.  

 

The more kids I've had, the less patient I have become.  There is so much to be done.  I can't wait in a line with 3 wild kids, who don't understand patience yet, because there is a malfunction in the scanner. Ain't nobody got time for that!  I'm constantly thinking of all the things that could be done instead of waiting.  It became so bad that I was so quick to get angry about the dumbest things.  For what?  What good did it do me to get angry about things I couldn't control?  With Kalie, my patience has always been short.  This is something that I have felt so guilty and awful about forever.  I have been so hard on her for things she can't control, but I thought that I could.  Since starting Brain Balance I have really had to take a step back, lower my voice, and raise my patience level.  I have had to see things through different eyes, trying to be more Christ like in the process.

 

  I have gotten a lot better, with some slip ups here and there.   I can tell on the days when I don't have as good of patience as I should have the rest of the family is quick to anger too.  I think this whole process will be a blessing for us all.  It is testing different areas of our lives that maybe we didn't think needed help, or that we knew needed fixed but just couldn't seem to kick it ourselves; we needed a little nudge.  Slowly, I will get my patience back.  I'll be able to stand in a line with all my kids like no ones business.       

 

I'm not really sure why I chose to write about patience today.  I just felt like I needed to.  Maybe to help someone else who may be struggling with patience.  I just know that my biggest realization with this virtue is that my kids are young and, like I said, don't understand patience.  It is my job to be an example for them, like my dad was and is for me, and show them how to be patient. 

Food so far

Well, we heard back from Amy and it wasn't what I wanted to hear, but still helpful.  She told us that as far as cheese goes, Kalie might just have to go without it for a while.  She said she has never found a cheese that is very good.  After thinking about it, being without cheese for her wouldn't really be that hard.  She loves string cheese but it isn't something I always have in the house.  Amy also said that she has found some DF, corn free yogurt at her whole foods so I will go back and double check. She let us know that there will be wasted money when starting out new foods, and that it might  help for Charlie and me to try them with her.    Overall she is giving us a lot of good advice and helping us so that Kalie won't go to food avoidance right away, which is what I was worried about. 

 

We started easing into it Thursday.  We had ground turkey tacos.  Friday, for breakfast, she had her GF brown rice cereal with soy milk and some strawberries mixed in.  She wasn't really a fan of the milk I think but she ate most of it.  For her lunch I made her an organic PB and cashew butter sandwich on GF bread with carrot sticks and strawberries and a lemonade.  She only ate her strawberries because she said she ran out of time at lunch (this is a common occurrence with our social butterfly). I made her save the rest in the fridge so she could eat it Saturday. For her afternoon snack we had her try hummus with GF pretzels and crackers with cashews.  She said she didn't like the hummus or the pretzels.  I'm going to keep trying with this one though because the pretzels look way different than normal but taste really good.  Kalie is a very visual eater and if it doesn't look great, she has it in her mind that she doesn't like it. She may or may not get this pickiness from me.( I never tried strawberries until I got married because the little seeds on the outside freaked me out.) For dinner I made a pork roast in the crockpot seasoned with bay leaves, and salt and pepper, and about a half a cup of organic vegetable broth.  I also roasted eggplant.  She really enjoyed the pork, not so much the eggplant.  In her defense, I roasted them a little too long and so they were a little burnt.  Saturday morning she wanted to try her GF oats so I made that and sprinkled in some cinnamon.  She had rice milk with this and liked the milk but not the oatmeal.  For a snack I gave her strawberries (again. I need to get different fruit for her!), and pumpkin seeds.  For lunch she had her leftover sandwich, an apple peach applesauce, GF bbq potato chips and a lemonade.  Afternoon snack we made "sorbet" by blending frozen mixed berries with two tablespoons of cashew butter.  This was really good and even Kyna wanted some. At dinnertime, I made chicken tenders coated with olive oil and crushed brown rice cereal, flash fried them and then baked them at 425 for 12 minutes.  The kids also had celery sticks and GF ranch dressing.   This morning she had peaches and a piece of GF toast with cashew butter.

 

Overall, its been pretty good.  It takes a lot more thinking on my part, though.  Usually for an after school snack she would go to the pantry and pick out something that she wanted-usually goldfish crackers.  Now, I have to kind of prep stuff for it and think ahead because if you remember, we are doing a 4 day rotation with food so she's not really supposed to have the same thing everyday.  I haven't been doing it very well since she's had bread 2 days in a row, but I'm trying not to stress too much about this part of the diet.   It's been eye opening though.  I know that Kalie definitely suffered from "the crash" where she would have one sided meals or snacks and it wouldn't be enough to sustain her through the day.  Then she wouldn't be able to concentrate and would likely be grumpy.  Charlie was taught by his mom to HALT.  It means to check if you're H-ungry, A-ngry, L-onely, or T-ired.  I get so mad when he says he's grumpy because he's hungry.  In my mind, that's just a cop out.  After learning things from Amy, I'm starting to believe in Charlie's HALT system.  I don't think Kalie was getting enough in her breakfasts, especially, or her afternoon snack.  Now we pick a carb, a protein, and a fat for each of her meals and snacks.  Amy has made a sign with ideas of each food group for us that has made it pretty easy to see what I'm choosing from. 

 

I've been doing tons of "pinning" on Pinterest for food ideas.  I've found so many vegan food blogs and learned some really helpful tips for baking.  I'm going to make my own GF flour mix of brown rice flour, oat flour, and tapioca starch.  For GF baking, you have to mix different types and a starch to get a similar flour as wheat flour.  For egg replacement I am using ground flaxseed, which is actually really good for you, and for the milk I will just use rice milk.  I might buy a powdered egg replacer that I've read is good for baking too.  I even found a recipe that I could use for tortillas!  I'm really excited about the baking part.  If I learn to perfect it, I might even add vegan cupcakes to my bakery, and you know while watching Cupcake Wars you've always wondered if those vegan cupcakes really taste good :)

Visit to the grocery store(s)

Today we went grocery shopping.  Kalie's diet is supposed to take into full effect on Monday so these next couple of days, we are easing into it.  To prepare for this trip, I carefully studied all the lists and suggestions that Amy emailed to us.  Then I made up a list of all the things she would need and then other staples we needed for the rest of the family.  The first store we hit up was Trader Joe's.  First time there, not a big fan.  The workers were all really friendly, but they had about 5 things that we needed.  It's more of an organic type store than a GF,DF store.  We were in there for maybe 40 minutes, and the kids were already acting wild.  I was dreading going to the next store which was Whole Foods.  Charlie and I had previously walked around there (our first time) just to see what it was like.  We were a little confused so we just left.  Imagine taking 3 tired, hungry, grumpy, crying(and sometimes screaming) kids to a huge store that you are lost in to begin with.  Add on top of that having to read each and every label up and down to make sure its GF and DF and EF and no vanilla or corn.  Guess what?  It sucks.

  

We have come to the conclusion that Kalie will basically have to eat only vegetables, fruit, and chicken.  So many things were gluten free and dairy free but we turned the label around and sure enough, there were the words 'traces of corn' or 'cornstarch.' Soy yogurt? Cornstarch in it.  Soy cheese? Casein in it (which doesn't make sense).  Gluten free chocolate cookies? Vanilla in it.  Do you know that we had to get her vegan cheese?  Do you want to know what vegan cheese smells like? Vomit.  I'm not even joking.  I know a lot of times you smell something bad and you joke around and say "ew, that smells like crap".  No, this honestly smelled like that.  I gagged while grating it for her tacos.  She tried it, but didn't like it. Can you blame her?!  We also got her GF tortillas.  It didn't really "wrap" like a tortilla should and it was really hard to chew.  Again, she tried it and didn't like it. She hasn't tried the milk yet, but what if she doesn't like it? This is where I'm concerned.  What happens when we buy all these things and try them out, yet she doesn't like them and then won't eat at all?  It broke my heart when she asked if she could have a plain tortilla just for tonight. (We did let her have real cheese, I wasn't about to make her eat that vomit cheese)  Don't worry, I emailed Amy and told her my concerns.  I'm secretly hoping she'll just say "Ok, since casein is on her mild list, let's let her have that back."  That won't happen though. 

 

The third store I had to go to was Smith's.  I was dreading this because although I got to go alone while Charlie put the kids to sleep, it was the third store I had been to today!  They are also remodeling so I didn't know where anything was, and I was running on low fuel.   I am glad I went because I found a sweet little aisle full of organic, GF food!  It's like our prayers were answered.  Organic and GF eating is expensive! To have to spend gas money to go get it was like a smack in the face.  Now our regular grocery store, that is 5 minutes away instead of 25, has a great selection.  Almost everything we got at the other 2 stores were there plus some different stuff.   I'm so grateful that I will be able to do almost all of my shopping in one place! Now here's hoping she will like her breakfast of GF toast and Soy milk.. :/

 

Bad days

Do you ever have one of those days when things are just off, and you don't feel quite yourself?  I was having one of those days yesterday, especially since we had gone over the blood test.  That wasn't all it was though.  I couldn't figure it out.  I often have these moments during the day when I'm completely involved in something and I have this strong feeling that I need to say a little prayer for Kalie.  I'm sure if you have kids too, you have had this feeling before.   I had one of these moments yesterday while she was at school. 

 

Kalie came home from school and seemed a little down.  She didn't come in with her usual, upbeat "Hi, Mom!"  She just gave me a quick,small smile and plopped herself down on the couch.  I asked her what was wrong and she told me she fell down and hurt her knees at school.  Something was still bothering her though, but I didn't push her.

 

 I was looking over her work from school and noticed that it wasn't good at all.  On one paper where they were supposed to describe the butterflies they have been.. growing (is that the right word?), she couldn't write a complete sentence, she wasn't getting her point across and it just didn't make sense. After several outbursts during homework time and a lot of defiance and crying I set her down on the couch.  I asked her what was really going on and she just started crying.  It broke my heart and even now makes me upset thinking about her big tears.  She told me that she didn't understand the butterfly paper, she didn't know what she was supposed to do and she wasn't allowed to ask for help.  A little boy in her class had been a little mean to her too.  She just had a bad day.  I explained to her that it's ok to have bad days.  Everyone has them.  I then told her that the most important thing for us to learn from bad days is that we have to move on from them.  We can't let them define us and we have to choose to be happy again.  Usually she would've "listened" and then a little bit later would have done something mean or just continue to be grumpy.  Yesterday, though, she only moved forward and never looked back.  I was so proud of her.  It's hard for adults to do that, let alone a 6 year old.  I have a feeling that bad days that were so often here, are going to start to dwindle in numbers.

Blood test results

Last night we received Kalie's results from the blood tests she took that were to determine her food sensitivities.  I was so eager to read them, but I wish I hadn't been.  Shortly after I read them I received an email from our nutritionist, Amy, with details about foods and meal plans.  I was immediately overwhelmed, and kind of confused.  I didn't think about it too much because I knew we were going to meet with Amy (via Skype) the next morning and that she would be able to explain things better. 

 

So we're all on the same page- the food sensitivities are determined so we can eliminate certain foods and understand better what she's eating and how it's affecting her brain. She starts on a 30 day elimination diet and gradually gets to add a food.  By gradually, I mean one food a week.  After those are brought back we have to monitor her and be on the look out for any symptoms she might have been having before (constipation, fatigue, hard time concentrating, etc.).  If she does have them again, we have to eliminate them completely. 

 

We met with Amy and discussed the results.  On the result sheet it is color coded by groups of tolerances.  Severe, Moderate, Mild, and Acceptable.  On the severe list is banana, beef, corn, egg white, and yellow squash.  On the moderate list is almond, asparagus, avocado, basil, bell peppers, brussel sprouts, cantaloupe, clam, coconut, mustard and vanilla.  On the mild list is apple, brewers yeast, garlic, grape, green pea, orange, peanut, pecan, psyllium, salmon, sesame, tomato and white potato.  

SO, anything on the severe and moderate we have to eliminate completely for these 30 days.  Then after those 30 days are over we can add one food a week.  There are 16 foods on those lists. That's another two months of adding and taking away food.

The foods on the mild list she can have twice a week and not the same one each time. 

She also has a mild reaction to candida (cane sugar, fructose, and honey), gluten (barley, rye, wheat, malt), and casein (cows milk, goats milk).  Because she wasn't having something sugary or with fructose in it everyday we can give that group to her twice a week as well.  The gluten and casein are things she was having everyday, so we have to cut them out completely.  Add all the things that fall in these groups and I'd say we have 6 months of this fun diet.

 

She still has tons she can have, which is good, but the part that freaks me out is the gluten free, dairy free.  It is completely overwhelming to me, especially as a baker.  How am I going to do this?  She can't have milk, yogurt, cheese.  She loves these things.  She can't have regular bread, crackers, cereal, muffins, donuts, cakes, CUPCAKES!  I have to find gluten free stuff, but here's where it gets tricky.  Remember the severe and moderate list?  Corn, egg whites and vanilla are on there.  A lot of gluten free things have corn in them so I have to read  gluten free (GF) labels double carefully now.  So in terms of baked goods...not only do they have to be GF, they also have to be egg free (EF) and dairy free (DF) (remember she has to cut out casein?).  Since she can't have vanilla, no flavoring cookies and such.  Well in my research looking for substitutes for eggs I found that you can use BANANAS.  Cool. Oh wait, that was number one on her severe list.  This is going to be tricky.

 

But wait just a second, there's more. Are you still with me?  or are you bored?  Within her 30 day elimination diet, we have to do a 4 day rotation of food.  Her nutritionist came up with a meal plan for each of those 4 days and she can't have anything from day 1 until day 5.  Make sense? Now, Amy told us that we shouldn't stress so much about the 4 day rotation because she knows sometimes its just not realistic for some families but our most high priority is that we keep Kalive GF, DF and stay away from the severe and moderate foods. I had a complete meltdown thinking about this.  I just started crying.  When my husband asked what was making me upset all I could say is "everything."  It's hard to explain.  I just feel so much stress right now and you know that song "Journey To The Past," from the movie Anastasia?

 

 Heart don't fail me now
Courage don't desert me, don't turn back now that we're here
People always say life is full of choices
No one ever mentions fear
or how the road can seem so long

 

That kind of sums up how I feel.  I know that we can't turn back, but I'm scared and fearful.  I have to be in charge of what she eats and I don't want to mess it up. Add on finding things that she will actually like and that taste good, taking special snacks for her to school (which means I have to talk to Ms. B who I try to avoid), all her exercises and school work. Suddenly I feel so much pressure.  Forgive me for rambling on.  There are a million things going on in my head on the daily and this has helped me to get a little out, to have in front of me what's really happening. I know it will take time and obviously we don't have to be perfect at it right away, it just seems a little daunting to me and I'm the kind of person that likes to have things mapped out in my head.  Wish us luck, we're gonna need it!

Treatment

A lot of people have asked me what Kalie does in her after school program.  She goes every Monday, Wednesday, and Friday for an hour at 2:30.  She spends a half hour doing cognitive therapy and a half hour doing physical therapy.  It's just Kalie and the teacher.  The teachers there just LOVE her! They have told us so many times how smart she is and how sweet she is.  It definitely makes us proud and happy. 

 

 For the 7 months that she has been in first grade, the only things we have been told by Ms. B are negative.  She's never said she is so smart or sweet.  She's only told us that she's a distraction, that she doesn't give people space, that she's immature.  I've tried so many times to convince Ms. B that Kalie IS so smart and capable. Oh man, I shouldn't have even started on Ms. B because I could go on and on and on. Let me get back to her treatment..

 

So along with doing her exercises at Brain Balance, we also do exercises with her at home.  She listens to a special cd 3 times a day that has high frequency tones to stimulate her left hemisphere. It is really annoying music.  She also does diaphragmatic breathing to help increase oxygen to the brain, allowing her to function at a higher level. We have her do this throughout the day and especially if she is upset so she can calm down and focus.  Then she has 4 eye exercises that she does 3 times a day. The wide eye stretch increases efficiency of eye movement, the near-far exercise helps her focus clearly on objects that are near and far, the slow eye movement and the eye alignment help her to follow a single image and to see a single image at different distances. 

She also does what they call the superman.  It is a landau reflex activity.  The landau reflex is a primitive reflex that everyone is born with. There are 8 primitive reflexes- rooting (sucking), palmar (grasping, thumb and finger), landau (balance and coordination), spinal (posture, balance), symmetrical tonic neck (lying to crawling transition), asymmetrical tonic neck (head, eye, limb coordination), tonic labyrinthine (mastering neck and head control) and moro (automatic response to sudden change in sensory stimuli). She also has to do the starfish which is a moro reflex activity.

 

On the days she goes to Brain Balance she has to do 3 sets of pushups and 3 sets of situps, along with the other exercises. 

 

It is a lot of work and to be honest, we forget or are running late in the morning.  We are getting better though :) 

 

Along with all this, she is on a 30 day elimination diet and we are working with a nutritionist.  She had blood drawn (I couldn't go because I was afraid for her, but Charlie said she was so brave!) and with those results we will find out what she has an intolerance to.  We have cut out MSG, refined sugars (and cut back on all sugar), high fructose corn syrup, soda, artificial colors, sweeteners, additives and preservatives which include aspartame, splenda, BHT, vegetable gums and food starch. We only get 100% juice, no processed meat, and are trying out a lot more organic choices. We are trying to get a lot more protein in her diet and more water, shopping the outer edges of the store to avoid all the pre packaged stuff that sits on the shelf and does not die.  I have realized that a lot of the stuff I can make myself.  Cookies I can throw in some protein powder, muffins I can hide vegetables in.  I'm actually excited about this nutrition change.  I've learned how to read labels and not that we ate horrible before, but it will be a good change for the entire family.  We will be healthier and happier together.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So many emotions Pt. 2

I wanted to touch on Kalie's emotions now.  When she was just a baby I always noticed if we had been out a lot or she had been passed from person to person she would be extra grumpy and wouldn't sleep well.  As she got older it was different things- going to a friends house, going to the park, shopping, going to grandparents house, birthday parties. Anytime we did something like that she would come home and completely melt down.  Crying, yelling, hitting, kicking, mean words. The intensity of these outbursts got worse with age. There were sometimes where we had to physically hold her down-arms pinned, legs held- so that she couldn't hit us or anyone else.   This was about kindergarten time.  I had just had Kaden a month before she started kindergarten.  Remember when I said after I had Kyna she went downhill and her hair pulling got really bad?  See how these things are over stimulating her and how she is reacting to things? 

 

Now let's bring in the results of her assessment again.  So Kalie is 6, but she has an auditory processing speed of an 8 year old and a visual processing speed of an 11 year old.  Suddenly, so much is making sense.  There IS something behind her frequent outbursts.  The reason she is having these is because she's taking in so much information at such a high speed that it's just getting jumbled and lost in her brain and so the only thing it knows to do is to react and in turn, Kalie reacts.

 

I feel guilty that for years I had been so frustrated with her.  I had constantly been blaming her for acting out and throwing these insane tantrums.  When all along, it wasn't in her control and she was probably just as confused and frustrated , if not more, with everything going on inside.

 

Nothing makes me happier than when we have had days free of contention (it was very rare for years which is another reason why we chose to do this program; emotionally,we can't keep this up) without hearing that my 6 year old daughter hates me.  You see, for Kalie, if something does not go her way, or what would be a normal chastisement or rule given to any other child, it is the end of the world.  She just cannot process it and it instantly makes her angry.  I can't tell you how many times I have heard that I am "the meanest mom" and that I should go somewhere else, or that she hates me.  I can tell you already that with two weeks of the program down, I haven't heard that phrase "I hate you" once!  She still has outbursts but she is now able to calm herself down much quicker and think things through.  I really believe that the emotions she will be feeling will be more positive as we continue with her journey, and I can't wait to see her progress.

Hope

I last left off with us searching for a child therapist and finding none.  While doing some research on ADHD and alternatives to medication I came across a website called Brain Balance Achievement Center. I read through some of the info, watched a couple of videos and thought it was really cool, and hey! it just happened to be right next to our gym.  We decided to go in one day and ask for some more information, told them we didn't want her medicated, they told us we were at the right place and then explained the process.  They would assess both sides of Kalie's brain by different tests and then come up with an after school program specifically for her.  Sounds great!  We decided that night to call back and schedule her assessments.  You know those $ signs they use to show how much a restaurant is?  Well I'm going to use that same scale (just picture a bigger number) for this.  Her assessment was this much $$$.  Ok, we could do it especially if it was going to help us find answers.  I paid and then asked how much the entire 12 week program would be.  $$$$$ !!!! Ouch.  So many things went through my head- How would we ever be able to afford that? Charlie's going to have to work a lot of OT, What other option did we have? I'm gonna need to sell a lot more cupcakes!

 Anyways, she went in for two and half hours and two weeks later we met with the director to go over her results.  Going in we were still unsure if we were going to even do it because of the price.  We sat with the director for two hours and discussed everything that Kalie had been tested on.  Suddenly, a huge stone was lifted off my back and tears came to my eyes.  I felt bad for being so hard on her, I felt relief and most of all, I felt HOPE.  Some may wonder why we would pay so much for something that we don't know will for sure help her and why we don't just take the easy way and medicate her.  For us, it came down to the fact that we would do whatever we had to and pay whatever for our child, especially if it would make her happier and healthier. Wouldn't you? Kalie started the program March 18, the day we met with the director.   Now here are some of the results.  Bear with me because I suck at explaining them.  You might be confused, but trust me, it all makes sense.

 

They tested both hemispheres of her brain and found that for dominance she is right footed, right handed, right eyed and LEFT ear.  For a perfectly balanced person, these would all be left or all right. **Side note: I didn't know this but it was explained to us that everything you hear out of your left ear goes to the right brain, everything in the right ear goes to left brain.** 

For her vision they did different tests- eye movements, eye reflexes, processing.  In all she came up short of the goal with a left hemisphere weakness. For processing, as in everything she's seeing and taking in, they found that Kalie's brain is trying to process info seen at the speed of an 11 year old.  Basically, way too much!

For hearing she came up short on one and in the auditory processing she was at an age 8 and her right hemisphere was weak. This tells us that she's hearing out of her left ear, it's going to the right brain, and because it's weak, the words she is hearing aren't being sent to the left brain and its getting mixed up in a space between. In short, she has a hard time comprehending things which we have been told over and over again from Ms. B.

The also tested her smelling and she missed two of the 12 common scents.

Next was the touch - I don't remember how she explained these ones but Kalie's brain is at an age 4 for half of them. 

Then they did like a physical test, and she was above her age on all of them.  (She gets that from my side of the family ;) )

The director then explained to us a WIAT percentile and where Kalie is at on that scale.  This is basically where a normal first grader would be in all academics.  Kalie was above average for all but 5.  This girl is in the 91% in math fluency!! (Does not get that from me!) The ones that she had a low score on were listening comprehension (this happens in the left brain and remember Kalie hears things out of her left ear so its going to her right brain?) reading skills, word reading, oral expression, and pseudoword decoding.  See how this is all kind of coming together?

The director also let us know that kids with ADD/ADHD have a right brain deficiency.  Medication is for the right brain.  Kalie has a left brain deficiency.  So this means..Kalie really doesn't have ADHD.  Medication wouldn't have even helped her! This was all so crazy to us!

Now, you might ask how they know this and how are we supposed to know its true? Remember that four letter word-HOPE? We have to have hope and faith that this will work and that they know what they're talking about, because that's all we have left.

So many emotions

I remember a specific trip to Target.  Kalie was 5, Kyna was 2 and I was pregnant.  Kalie had been asking for EVERYTHING in the store.  You've all been there right?  So, she was really upset, like, livid.  Even though she had been awful through the whole trip I decided that I would stop on our way out and get the girls a drink.  Kalie started screaming. Yes, screaming at the top of her lungs.  She grabbed the cart and tried to pull it over on its side, she took her shoes off and threw them.  I have never, EVER, been so embarrassed in my life.  I was alone, and all I could think was that these people are probably wondering why the heck I was pregnant when I couldn't control my existing children. Picture this if you can- A screaming 5 year old, a pregnant woman trying to hold down her 5 year old and grab her shoes all while pushing a cart full of groceries and 2 year old.  It was a circus. I made it to the car, got everything put in and wrestled Kalie into the car.  Then I sat down, and just cried.  How is this my life, I thought. I felt helpless.  You see, that would be a normal tantrum for a 2 year old, maybe a 3 year old, but a 5 year old?  There had to be something behind this. 

I am a Mormon.  I have been raised up in the church, we are raising our kids in the LDS church.  We believe it with every ounce of our body.  Now, why would I share this? Well, while dealing with Kalie and the struggle that it has been on our entire family, I have always thought- well we just need to be more valiant in reading our scriptures and saying family prayers, having family home evening and that will help Kalie.  I was always taught that if you're doing these things, you will be blessed and your family life will be more peaceful.  So in my mind and my many emotions, I thought that I wasn't doing enough as a mom, that I wasn't teaching them enough of the Gospel.  I felt like a failure.  My faith really wavered at times.  If we were doing these things, why wasn't our life changing? And then sometimes I would think that I was just a crappy mother and didn't know what the heck I was doing, and that I had so far raised a spoiled brat with an attitude like I had when I was 16. Was this to be our life forever?

No. It isn't. But at the time, it felt like it.

I hardly ever wanted to take the kids anywhere because I knew that I was going to have to walk on tip toes around Kalie so she didn't explode.  We would have tons more episodes like this, especially if we had done something fun.  She would be overstimulated and melt down.  We knew it was going to happen, so we started planning around Kalie.  Everyone's life was centered around her and how was she going to react. It gradually got worse and worse.  It was to the point where I was so miserable, I wanted to just give up and leave.  Our home was not a place of peace. 

It's hard to explain this, and as I sit here and type I feel like I'm just rambling.  I just wanted to put out there that I have gone through so many emotions- anger, confusion, embarrassment, guilt, depression, hurt.  After a future meeting, I would find out that this was completely normal for our situation, and cue- HOPE.

Purpose and a little background story..

I decided to start this blog to be an outlet for me while we go through this journey with our oldest daughter, Kalie, and to possibly give support to other parents going through similar things. Here's her story-- 

 

Kalie is an energetic, silly, talkative,athletic 6, almost 7, year old.  She is in first grade. She attended one year of preschool at the age of 4 and then went into kindergarten at the age of 5. Completely normal. She did well in both and excelled.  Then she entered first grade and some things started to change.  She had seemed to forget all the sight words she learned and her reading seemed to have gone backwards.  We had our first parent teacher conference to discuss the normal testing they do in the beginning of the year and everything else going on in the class. 

          Her teacher (I'll call her Ms. B) told us she was right were she should be academic wise, but she was a little talkative and tended to be a distraction to others. She was also having a hard time getting her work done because she was distracted.  Not exactly what I wanted to hear, and something that I had been suspecting for 3 years came back to play in my mind.

Four months into the school year, Ms. B came rushing out to me after school telling me "Oh my word, Kalie is having a hard time keeping her hands to herself"  Kalie was balling and I was fighting tears back because I could tell how upset Kalie was.  Apparently, Kalie had been tickling a little girl in her class, accidently touched her butt.  It was blown out of proportion by little girls grandma, taken to the principal and then Kalie had to be talked to, by the PRINCIPAL, about keeping her hands to herself.  Because of this, I think Ms. B threw it out of proportion too. Kalie and I cried the whole way home. We later talked to the principal about it, and she was so nice and let us know that she knew Kalie was being innocent and silly.  It was a silly thing but as a parent you never want to hear that the principal had to talk to your child.

 

Remember that little something that was in the back of my mind?  Well, I decided we needed to talk to the pediatrician about it.  That something is ADHD.  Let's pause here and rewind 5 years--

 

When Kalie was a baby she had the normal amount of hair, not too much just normal.  At about 1 I started to notice that it was thinning and would occasionally find some in her crib.  I thought it was just rubbing off while she slept. She was also a finger sucker so as she got a little older I noticed she would suck her pointer finger and twirl her hair.  It would knot, she would pull. By age two, we would find hair all over her bed and all over the floor around it and sometimes in her diaper. She literally looked like a cancer patient at one point.  Her hair would grow back sporadically.  From 2-3 she started to let up a little and it grew back, it was beautiful and had a little curl in it.  I was finally able to put a bow in it, it was great!! When she was 33 months, I gave birth to her sister.  Then things went downhill.  She started acting out like crazy and started to go bald on one side again.  I researched this and came up with trichotillomania. I also found that people that suffer from this can also have OCD issues or ADD/ADHD.  As time went on, the ADHD symptoms kept popping up.  I brought it up with her ped at age 3 and was told she's too young because normal 3 year old behavior (tantrums, disobedience, high energy) is similar to ADHD and its hard to tell.  She told us to have her tested in first grade if it was still an issue.

 

Ok, now back to December of 2012.  We took her to the ped and was given two surveys, one for us and one for Ms. B, to fill out.  It asked a bunch of questions about her behavior and emotions.  We took it back to the ped and she told us Kalie definitely has ADHD and advised us to take her to a child therapist/psychologist.  We also told her we did not want to medicate Kalie and she agreed.  We took the list of child therapists home and only one of them was covered by our insurance and she wasn't taking new patients.  What were we going to do?

To be continued..