I Want My Children to Suffer

I was changing Peyton's diaper this morning and Hannah was on the bed making her Hannah noises and constantly asking for "green apple" which I didn't have and may not give her for along time (that's another post). Peyton was looking at Hannah with such attentiveness. She smiles at Hannah all the time. Hannah's her big sis...of course she will look up to her for a time. My first reaction when I see Peyton studying Hannah is to distract Peyton because I don't want her to learn from Hannah. I want to protect Peyton from the pain of being a sibling of a child that can sometimes be out of control, the pain that I know Abigail feels when Hannah won't play with her or the pain that Garrett feels when he is trying to tell me a story in the car but is constantly interrupted by screaming or when he has to endure mine and Steven's depression but not fully know why we are so burdened. Let's face it, when one child is "lost", we as parents are like the shepherd who leaves the 99 and goes to rescue the lost one. Even when I am engaging with the other children, I grieve for Hannah. But I do sense the Holy Spirit's speaking to my heart, "I have perfectly orchestrated the makeup of your family and I have a purpose for Garrett, Abigail, and Peyton as well" I believe that God in His perfect wisdom really does work all things for the good of those who love Him and are called according to His purpose. I believe that our primary purpose really is to glorify God and enjoy him forever. My human heart wants to protect my children from every conceivable evil in the world. The heart that God has given me wants my children to suffer so that they may know Him. Suffering bring about compassion not pity, graciousness not mere tolerance, patience, humility, . If they don't suffer, will they need Him? Suffering brings out things that are already in our hearts but we might not know it...things like anger, pride, self-reliance (yes, self-reliance can be a bad thing sometimes...that's another post too!). Hannah's autism has debilitated us as parents at times...well, I shouldn't say Hannah's autism...it's really our inability as humans to be everything that we "should" be for all of our children. Our heavenly Father in His infinite wisdom knows our frame. He is pruning and shaping our children, our family, our friends into what He wants us to be. We can trust Him. If not for my belief that God is sovereign over everything and that He didn't just create us and leave us alone, then I would not be able to press on through the hard days...through the days when I want to look at everything that is wrong in the world...everything that is wrong in Hannah's world. I will forever press this into my children's hearts...you can endure anything because of Him, the one who has every hair on our heads numbered...the one who directs the hearts of kings...the one who tell the sun when to rise .

Spring Break at Papa and Grammy's House

Hung with Papa and Grammy last week because it was spring break in GA. They are such great help and nice company for me. Even if they can't help at the moment, just knowing that they are there is nice. Papa takes up Abby's time however he can. They have started some vegetation in the back yard...not sure what yet. He takes her to the store and little errands that he has to run. Hannah is doing well this week. She is alot like a normal 8-year-old in that she asks to go somewhere constantly..."go to zoo", "swim", "trampoline", "ride zebra" (ride the carousel), "Kirsten, ride Zebra" (this means she wants to go to the zoo with Kirsten and ride the carousel). This is nothing new, but she does seem to be taking "no" a little better so I'm trying to use it a little more rather than always redirect or distract her attention. Children with right-brain difficiencies obsess about things and overreact to conditions that a typical child would get over much easier. Speaking of overreacting, we have decided to get Abby evaluated by BB here in PTC. We believe that she is either learning from Hannah or actually has a mild right-brain defficiecy herself. She is manic at times, charming one minute and the tazmanian devil the next. Furthermore, we have seen some improvement in her behavior specifically her hyperactivity since we started Hannah on the program. Abby is taking some of the supplements Hannah is taking as well as doing some of the exercises and very limited "screen time".

Tuesday, we went to Guntersville to an indoor pool. There was no one there for a while and it was nice. I wish I didn't feel like that. Even Hannah loves it when more people show up, but all I can think about it what she is going to do to them. It wasn't long before three girls around her age came to the pool. They were staring at her and whispering to one another. Years ago, I would have went over and explained to them her condition and so on. I just don't always feel the need to do that anymore. They weren't mean girls but I could tell that they just didn't understand why Hannah kept splashing them and making her awkward noises and just splashing water out of the pool for no apparent reason. My heart hurt a little for Hannah because I knew she wanted to play with them but she just didn't know what to do. She didn't push it and just went off to herself and did her thing. I believe one day that she will have friends.

Here is a few pics documenting part of our week at Grammy and Papa's house:

Hannah wanted to "ride zebra" "ride elephant" so Mom and I took her to the Gadsden Mall because they have a carousel. I paid the attendant $5 because I thought she might want to ride it a few times. She rode it once and apparently was not impressed because after the ride was over she got off and exited the perimeter...or maybe she was impressed but thought it more important that the two ladies having Chic-fi-la needed some help eating their food. Being in public causes some stress due to Hannah's social non-boundaries, but although I have a ways to go, I am becoming more relaxed in part due to lots of practice and the graciousness of others. The lady in the bathroom at Wild Animal Safari is few and far between. Most people are very sweet to Hannah and often look at me with admiration more than pity. Occasionally, I'll get the "look away" when she is having a tantrum or the "why don't you do something about your child's behavior" look but I understand that. I understand that people cannot know everything about every ailment known to man. Furthermore, the autistic spectrum is so varied in degrees that even someone else who has a child on the spectrum might not even understand particularly what Hannah's day might look like. I am not hurt by people's ignorance anymore...besides, I'm ignorant about a lot of diseases and ailments as well. Hannah's condition has given me the gift of being in a position to love other's misfit children because I don't have to get beyond their idiosyncrosies, quirks, or annoyances.

This picture is of Papa and Grammy (Mom and Dad) on Papa's 67th birthday that we celebrated last week. He was born on April 4th, 1944, that's 4-4-44 (just a little trivia). I love this picture of them because most of the pictures that I have of Mom and Dad are such: Dad is looking away from the camera (he hates posed pictures) and Mom's mouth is always open (she likes to talk). They have been married for 44 years. They are still in love and they are best friends. They are givers. Currently, I and my children are takers. Particularly, we take from them emotionally, but they love us still. They celebrate every minor Hannah victory with us and they feel every down as well. They are patient with Abigail through her difficult age and over-reactions and constant babbling. They are gracious with me when I say things I shouldn't say to blow off steam. To use a phrase that has been used many times but is so applicable, they are like fine wine...they truly get better with age. We are so blessed to have them in our lives. I hope you had a happy birthday, Dad, even though it was in the dark (the power went out) and you didn't get to watch the NCAA final game.

This is Peyton while I was getting my "do did" as they call it down here. We were at a beauty school so they take quite a bit longer to style my hair but cost much less. Peyton's a dream baby...smiles all the time, so content as long as she can look at me and suck her thumb. Everyone raved at how good she was and she and I even got to startle an elderly man next to us when she popped out from beneath my poncho after nursing...hey, the kid's gotta eat!

This is a picture of a seatbelt...a seatbelt that had to be cut in order to get a child out of it. Hannah has more tantrums in the car than anywhere else. I can't make a u-turn or go anywhere that she thinks I shouldn't go without her screaming and yelling and kicking the window, etc. in the back seat. This particular day, we met some friends at a sensory gym and then had pizza. As soon as she was done eating half of the pizza that we ordered for the kids, she says "french fries". So, on the way home when I didn't stop and get french fries she has a fit like none other. It is these times when I ask myself why I love her so much! I was furious...she was furious...Abby was acting out because she was sick of it and Peyton was just sucking her thumb as usual. So I went upstairs to the apartment with Abby and Peyton and left Hannah in the car to finish her fit. Usually, she comes right up but this time she didn't. I went back down to the car and lo and behold she was stuck in the seatbelt...it was unbuckled but twisted around her waist and around her leg. I got her leg out but I could not loosen the seatbelt enough to get her out. So I cut it.

This is a picture of the side of Abby's head. Hannah tried to pinch her nose and was too rough. We have banned Hannah from nose-pinching but she still tries to get one in every now and then... Here she is getting Peyton when I was trying to take a picture of Dad with the monkeys:

This is Hannah walking Suzy.

Overall, the week was a break for me. We didn't do as much BB exercises as we usually do but I needed the refreshment because I have a renewed spirit and desire to press on. My perspective is renewed and I know that God has given Hannah to us and to no one else and I am thankful for her. I am thankful for all the wonderful relationships that are deeper because of her...all the amazing people that we have met along the way because of her. I am thankful that I know more intimately and more intensely my Father's love and graciousness and mercy toward us because of Hannah.

Still really missing Steven this week.

The Israelites and Me

I met a nice family today...a family that walked into the BB center with their two children. These children very clearly (to me anyway) had Functional Disconnection Syndrome (FDS), a term used by Dr. Melilo, the founder of BB. I looked into the mother's eyes and saw so much pain. I understood her burden. She was holding on and guiding her children through each door. I knew why. They were either "runners" or she was protecting their dignity or both. When I saw them come in, my light shoulders that I have been given the past few months turned heavy, the same heavy I've felt for years; the heavy that feels like you're only taking enough oxygen in to merely live. I felt her pain. I felt her longing for hope, but also wondering if this program would really help her kids or was it just like everything else that makes its way around the autism community. I hope that I will always feel this heavy when I meet someone that is going through trials. I hope that whether or not Hannah comes to life through BB that I can be a catalyst for hope. If she gets better, then I will perhaps annoyingly so, shout from the rooftops sharing the means that God used to heal her. If she does not get better, I will still have enough joy in my heart to help others see Jesus...to help others bear their burdens with courage and hope as well.

I personally had an off week this week. I so soon forgot what the Lord has already done for us. I forgot that miracles (atleast in my mind) have already taken place. The couple mentioned above asked me about Hannah's progress and honestly, I couldn't even at the time name 3 things that she was doing better. I simply forgot! She is doing amazingly well but I couldn't communicate it right away. I have been griping to myself all week and wondering when the next WOW moment was going to be that I couldn't even be thankful for what has already happened. You all know the story...God saves the Israelites from the Egyptians by parting the Red Sea to let them cross and then drowning the Egyptians. Soon after the griping started. We are all disgusted and probably even a little judgmental toward Israel when we hear that story. "I really don't think I would complain so soon after God did such an amazing thing for me", we say. Well, I'm guilty.

All that said, Hannah is still doing well. Three times since that first time, she has told me spontaneously that she loves me. She is taking all her supplements except for one and we are adding that on Saturday. She is so relaxed with her primitive reflex exercises. She left the eye-patch on for 55 minutes straight one day. She is doing other hard things with a great attitude. She put one of Peyton's headbands on and was primping in the mirror by tilting her head and rubbing her hair with her hands. I told her how beautiful she was and she just smiled.

Week 3

For you bottomliners, here the skinny for this week:
-- I'm currently doing Hannah's exercises by myself and she is cooperating minus a few silly moments.
-- As of this post, Hannah is taking 14 capsules, 2 doses of fish oil, and 2 doses of B-complex daily. We are working up to 28 capsules, fish oil, b-complex, and one dose of 3 other powdered supplements daily.
-- She is using more and more language everyday.
-- She is not as fearful of the essential oils and other strong fragrances that we are trying to get her to smell (ultimately closing her left nostril and smelling through her right)and in fact picked up one of the cotton balls and smelled it herself.
-- She is being very playful with Abby and the past couple of days Abby has actually helped with some of her exercises and did some with her.
-- She is calmer when go out to eat and other places where there is lots of noise and people.
-- She is consistently mimicking our facial expressions.
-- Overall, she is still Hannah but a much happier and more socially engaged Hannah

And for the rest of us:
Monday was hard but it always is. I woke up with the immediate low after the high I felt when she told me she loved me.

Wednesday, Steven told me that he really wanted me to try the exercises by myself to give him some piece of mind because he was leaving on Monday, the 28th and we didn't have anyone to consistently help me with them. I did them by myself that morning. She did awesome...so compliant...so relaxed...just letting me do my thing. We were amazed and comforted. She is doing Pretzel by herself most of the time now. That's a hard one for her!

I knew giving her supplements would be hard but I tried not to think about it and they have been sitting on my fridge staring at me long enough. I knew I had to start somewhere. Tuesday night I tried to give her the powdered version of amino acids mixed with water. She gagged and it all came up. I was so discouraged; it happened just like I had anticipated; however, in the middle of the night, when I sometimes do my best thinking, I realized that instead of chewing she had started swallowing the jelly beans that we had given her earlier in the week. If she could do that I could probably switch to the capsule version of two of the supplements. So we took a couple of days off of the aminos and multi-vit so I could talk to the nutritionist about it.

Friday I saw the nutritionist at BB to go over Hannah's blood/urine test. I was so depressed when I left there that I went home and took my first nap since I've been here. It was only about 30 minutes but it was nice. There was something different about that depression than the depression that I've struggled with for years; it wasn't really depression that comes with wondering how to find the balance between hope and fighting for my child's future and accepting God's providence in our lives. God has brought us so far in our faith/trust in Him since this trial began. He has brought us so far just in the last 3 months! I woke up from my nap believing that God was going to help us get 28 tablets, fish oil, b-complex liquid, and 3 other powdered mixes in Hannah's body at the right times everyday. In fact, if Hannah could stop gagging then we could switch to the powdered version of 2 supplements and cut the tablets down to 1/day. That would be our goal. We will just work into it. She fights and wines and acts like any kid that is fearful of something, but eventually, she picks the tablet up and puts it in her mouth and swallows it. She gags but it goes down.

Hannah continues to surprise us day after day. After I had my melodramatic (I use this term because my depression seems unwarranted in hindsight) meltdown on Friday, Hannah completely takes Steven and I off guard Saturday night. She apparently wanted a nectarine very badly because when I laid four capsules on the table and told her that if she took them (she had already taken 10 by coercion plus fish oil plus b-complex liquid earlier) that I would give her that nectarine. She went right over to the table and downed them one at a time like any typical child would down four M&Ms. Steven and I are still laughing about it and wishing that we had this on video.

Today we went to Wildside Exotic Pets and Hannah pet a large lizard and seemed to be in heaven with all the creepy animals in there. The owner was very friendly toward children and there was a nice lady in there that had a baby bunny in her pocket. Hannah and Abby were mesmerized. Abby wants a lizard, bunny, terantula, and everything she saw...God help us. Here's a couple of pics:


Steven is leaving Monday. I don't know when he will be back. He's my partner, my encourager, my sounding-board, my lover, my best friend. In one sense it will be easier when he's gone from a laundry, meals, mess stand-point. He and Abby won't be butting heads. In another sense the nights will be lonely and he and Abby won't be butting heads! lol What a perfect time to be away from each other with Facetime and Skype and Facebook and the like. Maybe we will fall in love all over again...from a distance is how it happened before!

Week 2

This week has been packed full of blessings. My cup is overflowing with joy and excitement! The progress that Hannah has made is so unexpected that it drowns out the hard times.

This week we noticed that Hannah was putting her seatbelt on herself. Now, we just say "buckle up!" and she does it! It turned out to be perfect timing because GA has a seatbelt law and it can be the primary offense. The PO-PO busted me without mine but my three lil chillins all had theirs on and were sitting up so nicely. He thought he was going to kill a few birds with one shot but not this time! I just decided to revel in the irony and enjoy the fact that my sweet daughter who has always struggled with fine motor skills is actually putting her own seatbelt on!

She has been doing her primitive reflex exercises so cooperatively this week. She is making our job so easy! One exercise in particular we call "elephant" because she has to get on all fours and move her head up and down in a timely manner. Her back is supposed to be straight and she is not suppose to drop her shoulders. As of a couple of days ago she is doing it perfectly! Soon, Amanda, the director of BB is going to test Hannah's primitive reflexes and perhaps some of our hard work will pay off because some of the reflexes may be gone which is what we want. We know we are getting close with the Galant reflex because she is not peeing in the bed as much as she did before.

Friday, she ate her first Jelly Belly! She liked it and ate about 10 more. Before she would not even touch them!! She is not supposed to have much refined sugar but it's so wonderful to see her enjoying the things that other children (and adults) enjoy. In fact, today in church, Steven, Abby, and I were eating tic-tacs and I offered one to Hannah. She ate it! Amazing!

On the downside she is picking her sores and making them bleed and wiping the blood on her pants...yuck! Monday, I had just changed her clothes to go out and she snuck back into her bedroom and did it again. There was blood all over her pants. I was angry and said, "What the hell!!" (unfortunately, I admit that with all the stress over the years, I have picked up a profanity habit that I am trying to break). Now, she says "What the heck!" and giggles. Apparently, I have said "what the heck" enough that she picked that one up instead of the other one. She is totally trying to push my buttons.

And to top off the week she was lying in my lap this morning and said just as plain as day, "I love you." I couldn't believe it but there was no denying what she said. I tell her that all the time and sometimes I have her repeat after me and when she is compliant she says, "I yu-you." This time it was spontaneous and not repeating after me and completely unsolicited and so clear..."I love you"! I can't tell you how much that energized me to press forward and work harder on her home program. I want more of the real Hannah!!

There have been some hard times this week as well. She doesn't have any social boundaries. She throws balls at people's heads at Jumping Jelly Beans. It's hard to make her stop. She is just trying to play. Most people are really sweet about it but it causes me a little anxiety. She honks people's noses and it hurts! She hugs strangers (which is kind of sweet). Unfortunately, one lady in the restroom didn't think it was so sweet, because she said "Excuse me??" in an admonishing tone. I told her that I was sorry but Hannah has Autism and she cut me off and said "hmmph" and stuck her nose in the air. Hannah was just trying to say 'hi' in her own way. The lady just walked out and I wanted to kick her bum on the way out but I held back. She must live too far in the country to have ever heard such thing as 'Autism'. Poor her. Steven comforted me by reminding me that I don't know what she was going through and I needed to just be gracious. I tell my kids that all time but I needed it that day.

Today we went to Dekalb Farmers Market in Decatur, GA because we heard that the organic produce and nitrite-free meats were very reasonably priced there as well as having a variety of non-preserved, no-msg, bla bla bla packaged food there. I'm trying to follow the nutritional guidelines that BB has laid out for us. That place is unbelievable! It was like an international extravaganza of food. I bought cumin for 55 cents! There were people everywhere (very popular place). It was a 45 minute drive but I saved so much money that I'll probably go once-a-week.

Thank you all for your prayers and words of encouragement and tears of joy that you have shed for and with us this week! We love you, friends!

Week 1

We're here! Still settling in...still things that need a home, still getting adapted to apartment living (no screaming and yelling, no stomping through the house, etc). We met our neighbors under us and she, being the southern gal that she is, apologized for the way she looked while stepping out to get the mail and I apologized for the screaming, yelling, and stomping. She was sweet and seemed understanding. I'm not so sure about her elderly father (poor guy)!

We found a wonderful preschool for Abby where her creativity will be stimulated and her need to connect with other kids will be fulfilled. She is having a hard time so far. We are having to do alot with Hannah and are trying to include her when we can but she is acting out. Next week she will have a full week of what life is going to look like for the next 2 months and that should help. She had her first violin lesson Wednesday night and she is really excited. Carriage Lane Presby has an art academy and we found this teacher through them. Steven thought we could all go to Abby's first lesson together (I didnt agree but was trying to be agreeable (haha)). Hannah had a tantrum in the waiting area because she couldn't roam throughout the house. Mrs. Kay is a dear lady with lots of grandmotherly wisdom and gentleness. She was asking about Peyton and I said, "she's our angel". Kay said, "You needed an angel, don't you." Little Peyton gave her a big smile and I held my breath in order not to break down during Abby's lesson.

Peyton is adjusting wonderfully by sleeping 12 hours for 5 nights in a row. What a gift! She is always smiling and happy and sucking her thumb for comfort. God always knows what we need!

Steven is trying to work and sell real estate as always, but having to help me with exercises and general taking care of the girls as well. We have our spats, but we are drawing closer together through this struggle and not having cable or Netflix, our comfort at times we admit. I have my glass of wine every night and we talk about the day, the future, and by God's grace we even talk about how blessed we are. It truly is amazing how through stressful times, we truly feel the prayers of our brothers and sisters in Christ. God gave us special grace to get through the first week of BB.

The week started with a group of guys from Carriage Lane and my dad moving us in. Steven likes the church. I have not attended yet, but plan to get plugged in as much as I can next week. I am a little hesitant to get "plugged in" because I want to remain focused on what we came here to do and BB is a 7 day a week program. I want to get the job done and get back to our life in Colorado.

The BB program is very difficult....no surprise there. I can't go into the details of the BB program because it is just too much to type, but in summary, Hannah went to BB Monday, Wednesday, and Friday for one hour. In that hour, she was in the sensory-motor room where they did multiple activities that stimulate her brain, specifically strengthening her right hemisphere. We heard some screaming during the second half of the session and they said that is when they are doing tactile stimulation. Our part at home is difficult to say the least. We start out in the morning doing her primitive reflex exercises and then several times throughout the day we have to do a plethera of other activities to stimulate her right hemisphere and block the left. We have not seen any changes yet, but then we didn't expect it so soon either. They want us to do the blood/urine test again because the last one was almost a year ago. We pushed back on the blood and they accepted blood from her finger rather than our having to take her to a hospital again. We did that this morning and are expecting a knock on our door from child protective services any minute! Fortunately, we were able to get her urine the old fashion way which was such a blessing! We will get the results back soon which will expose vitamin/mineral-deficiencies, amino acids, etc. Friday night I had to go to BB nutrition class and they gave us some supplements to give Hannah. I just laughed to myself and prayed that the Lord would work this out. 9 capsules twice/day plus powder in juice, bla bla bla. Hannah has never taken a supplement in her life. She won't even keep cold medicine in her mouth. No high fructose corn syrup, no french fries, no msg, yada yada. I'm thinking there is just no way but God is bigger than all of that so we'll see what kind of parting-of-the-Red-Sea kind of moment he will give us there. Ha! We are speaking with the director of BB to brainstorm on ways we can help her work toward getting the supplements in her system among other issues with the program.

Overall, the week was exhausting but good. We were able to get many of the activities done with Hannah as well as our other responsibilities and have a little fun as well. We're looking forward to this week as it will provide a little more structure for the whole family and Hannah will be that much closer to her improved state!

Taking Hannah to Georgia

I haven't updated the blog in so long that I feel like I need to fill in some blanks. Throughout the summer, Steven and I have been tossing around the idea of taking Hannah to Georgia Brain Balance Center in Peachtree City because they are set up to teach more severe children one on one...Golden is still a fairly new center and are focusing on more high-functioning children at present. At the beginning of the summer we were not willing to split up the family because of the strain it would have on our marriage, our children, among other things such as finances, etc because the program is a 6-9 month program. As we continued to do the exercises that Golden gave us to do for Hannah we increasingly were feeling alone and discouraged. I called BB in GA back in July just to get more information about their Pre-Brain Balance program (for the severe kids who need one-on-one and are not ready for BB). I was encouraged and hopeful that they would be able to help Hannah. Since then we have been going through all sorts of emotions as we started to contemplate the costs and the details of maintaining two households and selling our house and getting rid of things we don't need, and even what to do with the cat because cats are difficult to move(I know some of you are wondering why even think about the cat but we love him).

August 18th, we took Hannah to get her initial assessment with the Pre-Brain Balance team in Peachtree City, GA. She gave them hell to say the least. She hasn't acted so bad in such a long time. I wonder if she knows or senses more than we think she does. Anyway, they were able to assess her. She is definitely right-brain deficient and is operating at an overall level of about a 1-year-old. Our goal with their help is to get her right hemisphere in balance with her left. She still has all her primitive reflexes so we still have to work on those exercises. Unfortunately, we discovered that we were doing some of the exercises wrong so we will have to correct that. She cannot watch any tv among other restrictions because some of the activities she is so attracted to stimulate the left hemisphere and we need to focus on stimulating the right in order to bring it in balance with the left before she can really progress. BB gave us lots of specific instructions and activities that we have to do with her between now and the time we go down there. I thought I might come home refreshed from this trip but I am overwhelmed. Trying to just think about what we need to do today and writing things down as I think about them.

We have decided that Lord willing the girls and I will move to Peachtree City in March and Steven will stay here with Garrett as he has to work and Garrett is in highschool now. With this decision comes a domino-effect of things that have to be taken care of before we leave. We have to get ready to hopefully lease-purchase our house because we would lose too much money if we sold it. We have to find housing down there. Steven and Garrett will hopefully be able to move closer to Garrett's school to make things a little easier on both of them. We have to do all the things that the BB has instructed us to do in the meantime because getting Hannah that much ahead could prevent us from having to stay there so long. We have to have a baby (yes, we're crazy!!) We have to come up with the money to pay for BB. We think we have about one-third of the money so far, but we are considering some fundraisers. We have to find some help for me down there because the program is only 3 hours/week and then we have a home-program that covers the rest which falls on me.