Friday, May 27, 2011

Bye Bye CES Waiver

Hannah has been on the CES Waiver in Colorado for a few years.  The past couple of years we used it heavily. She was able to do hippotherapy with The Right Step (highly recommend them), respite care, behavioral therapy including ABA.  They bought her a swing set and a tandem bike and platform swings, etc.  It has been a benefit in helping Hannah and us cope with her issues from day to day.  The other day it was time for our annual meeting with Developmental Pathways.  This is the meeting where we go through all of Hannah's issues and document them in order to plan the next year.  It is always very painful for me to sit down and have to look at each and every thing that she is or isn't doing that she is or isn't suppose to do if she were neurotypical.  Steven and I have been talking off and on lately about forfeiting the services and we have come to that decision. Forfeiting the services that the CES Waiver provided is a huge step...a huge statement that we are making.  We are essentially giving up $35000/yr worth of services until she is 18 or so.  When Steven told the service coordinator, he said that she was dumbfounded and that she didn't know of anyone just forfeiting these services.  We know that there is a long line of kids waiting to get on the Waiver, kids with parents that have no hope, kids that need 24/7 care like Hannah used to be.  We just couldn't in good conscience continue to take something that we didn't need.  It feels so good to say that!  Three months ago we weren't ready because what if BB wasn't what we thought it was even though we knew it was a proven program.  We needed the CES Waiver to help us get through hard days and nights and it had its place but now if we continued it then it would just be a crutch.  Brain Balance has given me the confidence to go out in public without that stabbing pain in my neck and shoulders because of the stress and anticipation of stress.  We don't need respite care anymore.  I actually enjoy going out with my children (most of the time).  We don't need a behavioral therapist anymore.  I used to make jokes with Steven about how I felt like I was in prison and the warden Hannah decided when I got to eat, go to the bathroom, cook dinner, go get my hair cut, etc.  If I could work the care of Hannah out then I could do this or that.  It was usually so much trouble that I would just put off going to the grocery store until we just didn't have anything to eat or put off getting my hair done or things of the sort.  Well, the prison warden is now letting me outside for some much needed sunshine!  Yes, that's exactly how I feel.  I feel like I've been in a dark prison cell and I've been let out to get some sunshine.  I just feel free and safe to go out with my children.  I can't explain how much I have longed for this simple pleasure...the pleasure of going out to one place with my family without stress.  For so long our family has been split up.  Steven takes Garrett and Abby to church and Hannah and I come later.  I take Garrett to his game and Steven stays home with the girls or vice versa.

Hannah has a long way to go but for now that sunshine sure feels nice on my face!

Tuesday, May 24, 2011

The Doctor Visit

I made an appointment with a pediatrician last week for Peyton's check-up thinking that my parents might be here to help babysit while I take Peyton.  Going to the doctor for the past 6 years has been a depression trigger for me. After Hannah was about 3 I avoided it.  I only took Abigail once after she was born I think.  I just hated filling out those developmental questionnaires.  I hated the looks I got from the other parents and kids.  I hated the doctors because they couldn't even examine my daughter much less help her.  I think I had so much to deal with that it was just one more thing that I couldn't handle.  When I took Hannah she would always be belligerent...screaming and kicking and fighting everything they wanted to do.  She wouldn't stand on the scales.  She wouldn't stand still to get her height.  She would run around the halls making loud noises and crying and so forth.  I knew she was scared and didn't understand why were there and I was stressed out.  She even slapped one of the docs once. I think that was when I decided I wouldn't go back unless she was really sick.  I was horrified and embarrassed because they seemed horrified.  They were not equipped to deal with a kid like her.  Perhaps I should have changed doctors but I couldn't think about stuff like that... I was just trying to crawl up the muddy pit from day to day.

Here's a picture that I took of part of a receipt/report from the doctor dated 2-11-11...just three months ago. It says, "referral to TCH special care clinic 720-777-6739 cleared for surgery".  Hannah had to see the general practitioner in order to get a clearance to get general anesthesia for her dental surgery.

The referral to the "special care clinic" was because he couldn't do a darn thing with her.  He couldn't check her ears, eyes, tongue, listen to her heart, anything.  I can't believe I kept this receipt...I must have thought that I would look back on it "one day" and remember...I just didn't think that "one day" would be 3 months later!  Ok, so let's get to the good stuff.  Mom and Dad couldn't make it today for the appointment.  I thought about canceling the appointment but then I thought, "I'm going to take them all. They will do great. I need to do this."  So today I took Hannah, Abigail, and Peyton to the pediatrician's office for Peyton's appointment.  Hannah followed us right in the office, sat down and started looking at a bird book and looked out the window and was so calm and so well-behaved while the doc and I talked.  Abigail was also very well-behaved and did not interrupt us every minute.  We had to go into another room to weigh Peyton and Hannah didn't follow us but I heard her say, "Mom...Mom..." and then I heard one of the nurses say, "Mom's in here, honey. Go in there."  After the visit, Hannah walked out and sat in the waiting room and watched the fish without trying to reach in and catch one and without climbing on the tables and jumping off and without running out the door into the parking lot without me!  She just sat there like a normal child waiting on her mother to pay the bill.

After the doctor visit I was overjoyed.  I had no stress in my chest no stabbing pain in my neck from the anxiety no worries at all.  I couldn't believe I just took my three girls to a doctor's office with no issues!!  After that we went to the duck pond and Walmart.  When I was in Walmart I just walked where I needed to walk and Hannah followed me.  Sometimes, I didn't look back to make sure she was there.  I felt no stress.  I felt no staring eyes.  I felt no pain.

Sunday, May 22, 2011

Hannah Loves Me Now

"Hannah loves me now, Mommy!"  That's what Abby said today.  Abby has always naturally looked up to Hannah and wanted to play with Hannah.  It has been so heartbreaking to watch Hannah these past few years completely ignore Abby, her little sister.  In fact, when Abby came around Hannah would leave.  Abby is little and unpredictable and hyper so I understand that.  One of my dreams as well as every mother's dream is for my children to love each other.  I want them to be friends when they are old.  I want them to learn to be gracious and forgiving toward each other while they are young.  Hannah's Autism has definitely changed how we deal with sibling relationships in our home.  What are we suppose to tell Abby when she says, "Hannah won't play with me. Hannah doesn't love me.  Hannah's mean.  I wish we could give Hannah away."  All of those statements communicate Abby's pain and frustration.  Enough about that.  Here's Hannah hugging Abby today...melted my heart!! As you can see in Hannah's eyes, there is no anxiety, she is really hugging Abby and not just appeasing us with a quick lean into her.     

Here they are again at a restaurant tonight. Abby could not get enough but by this time Hannah was done for awhile.  
Ok, by no means does this constitute that loving relationship that I dream of for them, but hey, it's a start!  They are sharing a room now because Abby wants to be with Hannah (we have an extra bedroom if anyone wants to come for a visit!).  They fight and also even negotiate and compromise in their own way, for instance tonight they traded stuffed animals because Abby wanted Hannah's shark and then Hannah took the shark back but didn't give Abby the elephant and this went on for a few minutes.  They worked it out.  

Thursday, May 19, 2011

Never Give Up!!

Last year (in April I believe) we started doing Brain Balance Primitive Reflex exercises with Hannah.  It was hard to say the least.  Her brain, body, and heart just did not cooperate with our desire to rid her of reflexes that should have been gone long ago.  Her body was stiff and it probably hurt a little too.  I was up and down and all around with my emotions.  Fear of failure haunted me (as it has all my life) and kept me from really believing that things could change for Hannah and for our family as a whole.  We also were dealing with disbelief in BB.  How could the solution be so simplistic?  Were we so desperate to find a solution to the Autism problem that we were believing yet again that what we were trying this time was the answer?  I was also dealing with my pregnancy and bulging disc and everything that goes with that and being out of shape and 39 and pregnant!  I couldn't do this, I couldn't do that I told myself.  With all my doubt and fear and grief, I still pressed on.  Granted, I would miss days here and there and sometimes stop doing the exercises altogether for weeks at a time and you are definitely not suppose to do that.  However, I did believe that God was going to use Brain Balance to heal my daughter and heal our family which was my prayer.  During those times (and all times) I relied on my wonderful therapists to do the exercises.  We didn't do all of them...just started with a few day after day, week after week.  My friend, Mindy, posted a quote today that struck a chord with me. "Never give up on a dream just because of the length of time it will take to accomplish it. The time will pass anyway." - H. Jackson Brown  I have learned the old-fashioned way throughout life and especially this trial with Hannah that if I give my all today, then the todays will add up.  We will not be "on" everyday because of our humanness.  We will fear and doubt and procrastinate and have bad days, but we must keep striving because our diligence will pay off in one way or another.

I am happy to announce that our diligence has paid off in a big way!  Hannah has lost the Rooting, Spinal Galant, Tonic Labyrinthine, and Landau reflexes and is very close to losing the other four!  In fact, we believe that they will be gone by the end of our first BB session (in 4 weeks).  Ok, I know what you're saying, "what?"  "why is that exciting?"  A long time ago when we started these exercises, I only had a general knowledge of the primitive reflexes.  I didn't realize until I did more research on my own how much of a problem the retention of primitive reflexes can be!  That research coupled with Hannah going long periods of time without wetting the bed became my motivation to keep pressing on with the uncomfortable for Hannah and the ever-so boring and monotonous exercises that accomplishes the passing of the primitive reflexes.  The following is a chart that is simply stated and given to me by BB:

ReflexPurposeWhen Retained
Rootingsuckling, feedingoral fixation, picky eater, nail biting, mouthing objects
GraspHolding onPoor grasp, inconsistent handwriting, stimming of hands
Spinal GalantAssist in birth processFidgety while sitting, annoyed by clothing tags or textures, bedwetting
Asymmetrical Tonic Neck Reflex (ATNR)Upper body development in vitro, foundation of hand eye coordination and visual trackingSleep in "Greek God Pose", not able to walk in straight line especially while turning head, awkward gait, awkward athletically, poor visual tracking, poor hand eye coordination, difficulty crossing midline
Landauinhibits ATNR, strengthen muscle tone, vestibulo ocular motor skillsSuggests presence of primitive reflexes, balance issues, awkward with lower extremeties with effects on running, hopping and skipping
Moro (startle)SurvivalHypersentive or agitated easily by stimuli, hold breath when stimulated, hypersensitive fight or flight response
Tonic LabyrinthinePostural VestibularGravitational insecurity, impedence of head-righting or visual ocular reflexes (VOR), retention of STNR
Symmetrical Tonic Neck (STNR)CoordinationPoor hand eye coordination, uncoordinated, impedence of crawling, associated with learning disabilities

What the above chart has translated into for Hannah is many little victories that I won't list all here but many as such: She is sitting through church much more quietly and still (I am working on an entire blog post just on that!) She doesn't fidget and wiggle so much during dinner and other times that we might wish her to be still or atleast not jumping up and down on a chair.  Actually, she didn't even use to sit with us at dinner.  She would do everything she could to get away from us.  She stims (self-stimulates) much less with her hands.  She used to wiggle her fingers and hands in front of her face all the time.  She also use to play in the dirt and through the dirt up in front of her face.  Many times throughout the day, she just sits quietly and observes us and she is much more aware and interested in her surroundings.  She still wets the bed occasionally but it's usually when changes have occurred such as Daddy coming or going or staying at Papa and Grammy's house.  She is starting to move her eyes without moving her head or body and she has even crossed her eyes twice (if you can't cross your eyes, there's a problem).  There are so many other little things that are missing now that we don't even notice until we go somewhere we haven't been in a while or be around someone that notices a difference.  For instance, we went to Sensations Therafun (a place to play, climb, zipline, and the like) the other day after weeks of not going (because of the horrible experience it was due to her tantrums and obsessions) and Hannah was not so obsessed with the ballpit and she tried everything we wanted her to try without being so obsessed with one thing.  It is just amazing (sorry to use that over-used term) progress for her to go from being inflexible in trying new things to being completely flexible in eight weeks time!

As I think now about summing up this post, I am thinking of many other things I could have written.  I originally wanted to only write once a week but I'm thinking once a day now because of all the little things that are happening with Hannah as well as adding a new member to the BB journey -- Abigail!  I will write more on Abby later but time to get back to work now!  Thanks for reading!

Tuesday, May 10, 2011

Hannah Shows Empathy!!!

I'm sorry I haven't posted in a while..  very behind but I have some in draft.  Scrapbookers always say when you get behind, start with the present and work backwards so I will.

How sweet is a timely word!!  Just today I was feeling burned out and stressed/worried and was sharing it with Steven and crying tears in front of Hannah while doing her exercises.  I never think twice about crying in front of Hannah.  It's like crying in front of Peyton... Steven was trying to encourage me but I was so discouraged and just missing Garrett and feeling guilty and feeling sad because Hannah seemed to be regressing in certain areas (which we were told that she would...however, I suppose I thought it would be different for us...ha).  Attentively and adoringly, Hannah sat up and looked at me with her sweet eyes and smiled.  "Kiss", she said, and then crawled over, wrapped her arms around me and and hugged and kissed me and said, "I love you" and then kissed me again and said, "I love you" and then again and again.  I was shocked and I looked over at Steven and saw the same look in his eyes that I saw when the girls were born...pure joy.  Then I cried some more...and I'm still crying....  This is huge, folks!  She has never shown empathy at all in her entire life.  She has never expressed two hoots when anyone is down or hurt or crying!  Thank you, Lord, for my sweet Hannah!

Monday, April 11, 2011

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'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 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 .

Sunday, April 10, 2011

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 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.