Thursday, March 31, 2011

New Day....But Nothing Really New

After yesterday, I feared I would awaken to a different world today. Not true. Garrett still got up and climbed into my bed and told me he loves me. I changed his diaper and got him dressed as he jabbered about the bus coming to get him for school and how he wanted to wear "school pants," which are any khaki pants. That's leftovers from having to wear a uniform to school in Louisiana. We ate. He took his first 4 doses of his daily 13 meds and supplements. The bus came. The cows moo-ed for me to feed them. The sun rose. I breathed. Therefore God is with me, with us all. As new sign I bought to go in my kitchen says, "Keep calm and carry on!" Clara-Leigh

Wednesday, March 30, 2011

Today's Psychology Visit.....Rollercoaster Tickets, Please!

Garrett had his second of two 3 hour psychology evaluations today. In three weeks Grouchy and I will meet with the psychologist for 1-2 hours to learn the results of her evaluations and the pages and pages of evaluations Garrett's teacher and I completed for the psychologist. She will reveal to us the school and therapy recommendations as well as recommendations for assistance for self help educations, behavioral therapies he will hopefully be able to get at home, as well as therapy involving the therapists taking him out in public to work on daily living skills in the real world. Then a couple weeks after that meeting, she will give us the information on paper to share with the school system as we try to best navigate his Individual Educational Plan, or IEP. Even if the appointment was for an evaluation today, I used it to talk to the psychologist for quite a while as Garrett only took about two hours of his three hour slot. And I learned a lot......that I already knew. Let me explain: I have known for some time that Garrett would likely test with a low IQ, were he tested. I also have come to the reality that Garrett will likely not be independent. Well, those are the things that today, I was told were the a professional......someone who hasn't gradually watched this develop....someone who hasn't been alongside us encouraging us and in the fog of denial.....but a PhD who is looking at my son, completing the testing, and when I ask, dropping the grenade.....the grenade I had pulled the pin on but not yet thrown! While we were talking and we were going in the direction of services that might benefit Garrett, the psychologist mentioned that "with his IQ...." And I stopped her to ask if she had his IQ determined and what it was. It looks like his is in the 60s, and that is below 70, which lands him in the mentally retarded category. Ouch. Not news to me, but news coming from another face, ouch. It's real. She went on to say she would not give him the label/diagnosis of mentally retarded at this time because his scores for the evaluation of IQ are all over the place. So like Garrett....nothing simple or standard. So while in some ways he is low, low, in other areas he has these spikes of very with scores calculated he ends up retarded, but she has a hard time resting on this for now. She said that the mentally retarded label is very, very hard to ever remove, so she doesn't want to rush into that now. She also said that we will have her evaluate him again in 2-3 years when he is closer to 8 years old, and his brain is more solidified into maturity of development and his language skills may be farther along. Apparently, language skills are very tied to IQ because even if the language skills are not verbal in nature, it takes those skills in the brain for more cognitive areas of the brain to develop. Hope I gave that justice in the way I explained it. So while we are seeing he has more than the previously blogged "injustice" of being labeled delayed, he still is developing some, so there is a little chance his IQ may test a bit higher closer to 8 years old. Gulp, tears began to try to build up, but I swallowed them well. And he can grow and learn and maybe have a higher score next evaluation. Then we started talking about therapies more and then transitioned to talk about plans for the future. This is when my world came to a screeeeeeeching halt of my fears, but my gut knowing....... She said that with lots of certainty, she can confirm he will always need assistance, long term care.......oh crap......She said he would need help throughout his life because of his extreme impulsiveness and all of the "stuff" going on, or not, in his head. So she believes what I fear, that he will always need help, always need physical/psychological assistance from another human on this planet. Uuuuuggggghhhhhh. Let me stop here. I do not in ANY WAY mean to sound above caring for my son. I know some of you reading this either have had or still have an impaired child at home. I worship you all. I aspire to be the best I can be in this life, and I know those of you walking this path ahead of me are being your best. You are amazing!!!!! But honestly, brutally honestly, I do not envy you, never desired to be you, and quite frankly, do NOT want to be in your company. I do not want to join the club, go through initiation, get the handbook. I am not ready for this. I did not sign up for this. I am horrified, disappointed, and already completely exhausted. Completely. Tomorrow is a new day. Rest will help. Realization that we need more help with our child is a constructive thing. Knowledge that more help is ahead is good. Making a plan will be huge. So nothing was new to me today, but having it solidified by someone else and not hearing the usual "he is delayed, it will all work out, I don't know why he is like he is but he will catch up, have a nice day," was jolting, comforting, horrifying, emotional, and , well, relieving. So we bought more tickets for the roller coaster. No, we didn't buy them. We never got in the line at the ticket booth......hell, we never drove the damn car to the stinking fair in the first place. We simply decided to have a third child. We didn't care what gender the child would be. We didn't aspire to parent a prodigy or NFL player or Olympic athlete. Average was fine. Above average would have been smokin' hot. We just prayed, as most Christian parents and some non-Christian parents pray, for a healthy child. And mental instability was my greatest, greatest fear. So we must have gotten free tickets in the mail, won a drawing of some sort that we forgot we entered, or found the tickets on the floor at the grocery store. Here we are. We are now on the ride and I am trying desperately to find the seat belt and lap bar so I don't fall out as this thing lurches out of my control........But no matter what, we are on the ride and I will NOT turn away from my son and his needs!!! And last, thank you to my sweet mom and my dear friends whose shoulders I wept upon today. And to my sweet, sweet Grouchy: I love you and I am so sorry. Godspeed, and I promise to put on a happier face and get back to photos and positive vibes.....I promise!! Clara-Leigh

Monday, March 28, 2011

Photos....Few Words, FINALLY!!!!

Finally dusted off the camera and got the drizzle and cold to move out of Idaho!!! WHEW!! Here are some pictures from the past two days: Garrett was about to catch the bus this morning and looked so stinkin" (that's a Southern term) cute in his jacket with his summer haircut by the fire. He was also looking a little sleepy, still, but he still squeezed out a quick smile for me!!
Aaahhhhh, this is one of my new favorites! Yesterday afternoon Garrett was being surprisingly independent and quiet, and after I washed the heifers (Beth and Adelaide) for the first time by myself (didn't want the kiddos to get squashed (another Southern term) if the heifers didn't like baths!!) Ainslee joined me to let me take some photos of her with Beth. The heifers loved their baths and enjoyed the spa treatment!!


Here's Adelaide, the cow who will kick at me one minute and lick my cheek the next! Ainslee took this for me!! Have I mentioned how much I am loving these two cows??? They are just dumb enough to be a lot of fun !!!

Sunday, March 27, 2011

I Love You, Mommy.

I took a nap with Garrett today. He will not nap in his bed, but if I turn on my electric blanket and place lots of blankets along with his Thomas blanket on top of him too, he relaxes after about 10 minutes and falls asleep for almost two hours. He needs the rest. And apparently, so do I as I can nap with him and still sleep well at night!

This afternoon I was awake when he woke up and he rolled over to me, pet my cheek with his soft little hand and kissed me and said, "I love you, Mommy."

Heaven descended to earth for that sweet moment, and all else lifted from my heart. The burden was gone. My son was with me. Perfect.



Saturday, March 26, 2011

It Was Dreamy!!!

Addie and I had a marvelous time skiing, shopping and chatting yesterday. Shelby kept Ainslee and Garrett, and then we had a really nice surprise as Shelby's mom, Andrea, asked us to come have dinner at their home. We truly enjoyed spending time with their family, and dinner was BBQ Ribs....YUM!!!!!!

I am posting this photo of Addie posing in the deep, new snow right where we parked. I meant to get a shot of the two of us on top of the mountain where there is this absolutely breathtaking view for a background, but we had so much fun skiing that I forgot!!!

It was a little of a rude awakening getting back to the real world. While at our friends' home, Garrett kept calling people STUPID and saying POOP over and over. One of the children there actually stood up for herself. When he called her stupid, she looked across the table and said, "Do NOT call me that!" Good for her. I hope to talk to her again one day and apologize and explain Garrett a little. I know it's hard for me to watch these troubling behaviors, but it has to be harder to be a child and have someone call you that and the offender not get reprimanded to the point he ever quits. It's embarrassing, honestly. At least we were with friends who know Garrett well, but still, it hurts. It isn't fair to anyone around him, and I would give anything for him to act like he "should."

We see the psychologist again for another 3 hours Wednesday. She recommended some parenting books, but that was weird. She has no idea how many parenting books I have read, tactics we have decided to use, and how hard we have worked raising our girls. Now this....parenting books. I want to shake this lady and tell her that it isn't parenting, it's his brain. Something is way off and no one can explain it other than to say he has Mitochondrial Disease and try to medicate him. I probably will dive into the books and skim read them this weekend at night. But the tactics are just tactics for normal kids, in most cases. If I could devote every day, all day, to his behavior and care, I can tell you we would still have trouble, but I might be able to watch him all day and stay right on top of every move......but that isn't possible. I have a family. I don't have just Garrett.

I digressed......bottom line, while I was away with Addie, life was just glorious. I close and relish those memories!!! We had a nice evening with friends and appreciate all of the people God places into our lives!!!



Friday, March 25, 2011


Wow, I have been really serious here lately aside from a quick blog on Addie's dog Camper and his attempt to parachute from the roof this week!!!

But today.....TODAY......TOOOOOODAAAAAY!!!!!!! WAHOOOOOOO!!!!!
Grouchy is away for work, we have another sitter from the local family whom we ADORE, Shelby, who is on spring break and coming to keep Ainslee and Garrett for the day while I take ADDIE up to ski for the day!!!!!! Of course skiing is best when Grouchy is with us. We laugh ourselves, enjoy our car time with the girls when Garrett stays back, and we just enjoy ourselves as a normal family does.....maybe more. Can I tell you how much I am excited about this day though????? Just my Addie and me on the the slopes. It has been warmer here lately and I thought it might be rainy there, but nope, once I got an internet connection, I read that Bogus Basin got three inches of snow yesterday and ANOTHER three inches last night!! Can anyone say PERFECT POWDER?????????

So hopefully I will get off this machine and head out to hay the horses and heifers, get Garrett's meds ready for the day, finish packign my Yukon with our loads of stuff.....two chicks skiing, so lots of STUFF!!! And then Shelby rescues me and we get to go party!!!

I haven't been this excited in a while. Wow. How cool!!!!!!! Might have photos to post if my internet connection will improve some today.


Monday, March 21, 2011

The Biggest Injustice......So Far

I just completed a blog, but I realize there is something that has been on my mind that I need to spit out. I thought of it while I was in the car a few days ago and meant to blog it then, but I forgot. Imagine forgetting!!! As I mentioned in a previous marathon-blog, we have tried to parent Garrett based on the principles we learned as children from our amazing parents. We also read books, watched parents we respected, and of course, looked to the Bible and its teachings for the ultimate guidance. But we have been off, WAY OFF. Way, way, way, way off. And here is why, I think: From Garrett's one year checkup, he has had the label "delayed." Everything was delayed. His speech, eating, gross motor skills, fine motor skills, emotional reactions, behavior, everything. So we went with that, treating him like he was younger than he was, thinking that was suitable. That's what the therapists did. That's what we should do, right? So as he got older, we would try to just grow with him alongside his developmental age. For example, once he understood the word "no," we could expect he could be accountable for eventually understanding the word, thus be accountable for not respecting the use of the word, and receive a verbal or physical reprimand. He has been spanked, put in the corner, reminded, and yes, even popped on the cheek after screaming for a couple hours in the car or anytime we got into the car. And yes, once it was much too hard. And yes, it worked, but only because the crying was more bearable for everyone in the car than the screaming and kicking and spitting and thrashing. We have tried it all. I am not the least bit in denial that my child has lived in misery, looking back. He could not help so much of this, and we thought we could treat him as he was "delayed," and that would be the right thing to do. You know the problem about "delayed?" Delayed means : to postpone until a later time. It is a verb. A action. So if your plane is "delayed," it will arrive, it's coming, but later than originally scheduled. But it will arrive. So you can grab a bite to eat, make a bathroom stop, remembering to keep your luggage with you because the flight IS coming, just not now. SO you carry on as if it is coming. You don't drastically change your schedule and get a hotel and cancel your business meeting or class reunion and leave the airport (most of the time!). You just act normal, maybe waste some time, but the flight will happen. Garrett was called "delayed." So we went on about life, not canceling anything, not making huge changes, not adopting new parenting techniques or changing our strategy of life. We merely treated him as if he was behind, but would catch up. We treated him as if he was "delayed." This sounds like the right thing to do, given the label, but now we are watching him battle mental issues far different than "delayed." We are seeing autism-type things, ADHD, sensory processing issues, impulsive behaviors, OCD behaviors and seriously troubling anxiety. To hell with "delayed." We have waved goodbye to "delayed" and I would give my arms and legs to have it back and turn back in these other monsters. Why was "delayed" such an injustice? Because it let us live in a fog of denial. Sure, in the beginning, he looked delayed, and that would be the most common explanation for his condition a few years ago. I cannot blame anyone for calling it what it appeared to be. He was seemingly behind. But in that we parented him as if he was younger than his age, having no idea why we were banging our heads against a wall so darn hard. Why wasn't "no" working? Why could we physically punish him and he would continue to repeat the behavior over and over and over and over again? Why was one response to a situation normal but another, same situation, met with sheer anger and frustration and a tantrum? Answer: because he wasn't "delayed." So we have used the information scientists were giving us to mistreat our child. Of course no professionals had any mal-intent here, but that's the simple of it. We were going on bad information, or at least on information no one could have predicted would end up being bad. Sure, they could not really tell yet that he had other issues. Those unfolded slowly over time, and it was Garrett's pulmonologist who first helped us with getting some medication started to help us help him. It is easy to see things in hindsight. We all know that. But this is painful hindsight because not only were we mistreating our son for these years, but now we see the behaviors coming out that are sometimes mirrors of what he has seen from us for years. The frustration, hopelessness, anger, quick-reflex reactions. As if he needed help with things being weird, in we step and seal the deal. Great. Knowing it isn't just delay is helpful now. We are getting him the help he needs. We had a chance to start this process at the end of last summer, but we canceled the appointments with the neuro-psych doctor because we chose to take the kiddos to Montana for July to escape the heat and get away from therapies and driving and the craziness we had created at home. Then we moved. And now we are finally in with a PhD to help us with recommendations for Garrett's therapies and education. I share all of this to get it off my chest, naturally I am pretty flat chested since starting to blog....ha!!!! But seriously, just for a moment, I would like to remind you to keep an eye out for other children like Garrett where "delay" seems to fit, but then it doesn't. Don't let time be an enemy. Probe, research, study, ask the hard questions, get second opinions, and when something is bothering you and just doesn't seem right, don't be content listening to well-meaning family and friends to the point of believing what you see either "isn't that bad" or "improving" to the point you place yourself in denial. No one ever meant for things to be worse than they would naturally become with our son, but no one else lived with him every day like we did. I KNEW that things were way not right two years ago, maybe more, but I kept being encouraged by others. The encouragement and positive comments were nice, but deep down they made me feel horribly helpless. Could these people not SEE what I saw? Could they not sense any of the abnormalities I sensed? I felt like maybe it was just me. Me overreacting. I just needed to be more patient, as my mom would remind me. I needed to count my blessings. I needed to wait and see what God has in the plan to heal Garrett. I have a new friend at a nearby ranch who is a true Christian warrior, and I really like her. She keeps offering to take Garrett and me to a prayer room and her church's prayer meeting. When she offers, all I can think is, "great, another obligation, another place to have to drive with Garrett in the car, another chunk of time." From the outside, it would seem I need to take her up on this. She believes there is something missing in Garrett or maybe even something extra IN him that prayer could could fix. I am appreciative. I truly am. But I am not enthusiastic about this prospect. I have prayed. Our church family from FUMC Gonzales where we raised our kiddos most of their lives in Louisiana, still pray for Garrett. Our friends and family pray. But the reality is on paper, on slides of his muscle biopsy, in his DNA. He is not well. He is not normal, and I do not think a possession or lack of God in his little soul could cause any of this. It just doesn't rest well with all. Fact is fact. Sure, God can heal people. I know it still happens in modern times. But this is so seemingly huge and real and obviously not an easy fix. God can heal. But the proof of his condition is so real and I can see it. But God can heal. I am torn. I am thinking about it more, and I believe I fear going to a prayer meeting to take Garrett and then then if things do not improve, I may lose the faith I have left. I have faith. But I am discouraged, and I feel any additional let down in this earthly life may take me to a new lower low. I want to believe I can take Garrett before very faithful prayer warriors who petition Christ for Garrett's complete healing, especially with his brain, but I do not know what to think. I am more afraid of let down than of anything else. It's a new place for emotions. Anger, almost. But God can heal. So don't be hard on yourself if things seem wrong with your child, mentally. Go to the experts and get second opinions and ask the schools to test and evaluate AGAIN. Don't carry it all by yourself.....I tried. It works for a while, then the load gets too heavy. Thank you for checking in on us, for your friendship and prayers. Godspeed, Clara-Leigh

Long Week Ahead....Maybe a Very Good Thing!

I have been dreading this week. Since we home educate Addie and Ainslee, we take breaks with their lessons whenever we need them or want them, sometimes doing extra work some days to get caught up or get ahead for some planned time off. Garrett attends a special needs pre-k provided by a cooperative school between two counties here. However, he only goes Monday through Thursday and only mornings. When he is at preschool, we work really hard to get the girls' lesssons completed without the noise and disruption of Brother around. When he is home, it is chaos to try to get any work done. He is in the middle of the universe and lets everyone know it!! The girls have the hardest time focusing with the noise and his needy nature. So we cram school in when he is away, but this week........SPRING BREAK!!!!! Most parents would be excited about this, but I wasn't, honestly!!! My thought was NO BUS COMING TO THE HOUSE TO GET GARRETT for my sanity time!!! My time with my girls.....our peace and quiet.......our "normal" time. But nooooooooo, for some reason these schools let kids out for a WHOLE WEEK, or for us, four of his days of a week. I know it's a good thing to have a school reason we homeschool is so we can have good time off!! But PLEASE!!!?!?!?!?!? I was so dreading the week. On top of the week with Garrett home, Grouchy is out of town, so it's me vs. the whole deal......and I dreaded that in a huge way except I thought it might be best since Grouchy won't have to take up slack of extra time with Garrett home. I know this may sound callous or unloving. People will always judge, but I have learned to be very cautions judging, and try not to at all, because I have not walked in others' shoes. It is soooooo true!!! And yes, I am the MOST guilty of judging in this life. I was so wrong. I am so sorry. I think this lesson is learned over and over each day for me!

Last week's neuro-psych appointment opened my eyes even more to my son's world. He cannot help much of this frustration he feels nor the way he expresses it. Our responses to his behavior have been those of a parent responding to a typical, normal child, not this child. Most of my corrections and reactions have been uncalculated, poorly thought-out, and just plain wrong. I am rewiring myself to be constantly even-tempered with everything. He does not need to see people raising voices at him or anyone. He does not need to see the ever-present frustration in my eyes, the giving-up, helpless emotion I carry around like a 50 pound sack of horse feed every day. He needs to only see us positive, energetic and as good examples. Yesterday and the days before, I have prayed about this. And those days were better while we were together. Even when I wanted to absolutely lose my mind over his behavior, I kept my cool on the outside, completely, and I think I am already seeing some changes. Even when he is misbehaving, we have had to rewire to say things in a positive way. So instead of Garrett hearing, "No, we don't say POOP 5 million times each day," we now need to say, "Garrett, big boys use big boy words!" or, "Let's talk about another word. How about airplane?!" And yes, this is a real conversation we have had about 50 times in the past 24 hours. He has heard so much negative in his life. Soooooo many corrections. And yes, it would seem that this positive talk would be the right thing for any child, you would have to live a 24 hour period with us to see how it has seemed nothing was ever going to help us help Garrett mature and act the slightest bit peaceful and near normal.

I have seen changes. I feel the change in me, (although it is soooooooo hard!!!) and I am seeing it in Garrett here and there a little. So while I was dreading this week, I now see that this week of more Garrett time may be a good thing. It is work, no lie, and it isn't the least bit quiet around our house. Shoot, I know quiet isn't something I should expect with a household of three kiddos, but just normal volume for this number of people would be peaceful! As I try to hold myself together more and plan my responses better, I am also trying to teach my girls to do the same. Hearing their frustration come out aimed at Garrett makes me replay so many of my mistakes parenting him. It's like it is a big facade. I can be incredibly frustrated at a behavior or phrase or outburst and need to blow my top or just walk away, but I have to can with it....but NOT LET IT SHOW. SOOOOO not me!! I am usually an open book, pretty transparent, sometimes brutally honest, but not in any way with this little guy. So here we are, Monday of spring break. The dread is gone. He is doing okay. The girls have their planners all filled out by me to show them the school work they have to get done this week. We are a little behind and they both wanted to do day camps at the YMCA next week while Caldwell schools are out, and Grouchy and I thought they should. BUT to get to do that, they need to get two weeks of school done between last Saturday and this coming Sunday. They are so on task. Garrett is trying hard to get us all off course, but the girls persist, I distract him, they take turns entertaining him here and there, and all is well.

I think this week may be good for us all. I will get a sitter some for certain things we try to do and hopefully for a full day so the girls and I can go see a movie, maybe shop and just take a break. We miss Grouchy terribly, but I am hoping that I can help Garrett make some positive changes that Grouchy will notice and that will give him more hope when he sees Garrett again.

Wow, that was a long post seeing how I really wanted to say I have re-thought this week and we might survive!!
Oh, it is raining here weird. It's desert here, but it has been raining (drizzling compared to south Louisiana rain!!!) for days until yesterday when it was dry but felt like a hurricane with the wind. It was nuts. We played a game of "Run Over the Tumbleweeds" on the way to a 4H event yesterday. I had to pull tumbleweed pieces out of my Yukon's grill last night!! But it was fun. Garrett went to the LDS church with one of his sweet sitters, Ali, yesterday afternoon so I could take the girls to the 4H event. We also grabbed dinner at a quick Mexican place another 4H family took us to, and we made a WalMart run.

I think part of the relief and positive energy I am feeling is the admission that I cannot do everything. I feel relieved we have hired part-time care to help with Garrett in the evenings. The neuro-psychologist says it isn't babysitting, but respite care, or care for someone to give them relief time away from a person...or that's the Cliff's Notes version of the definition. So we don't have a baby, but we have someone who requires everything we have and who we need to sometimes leave behind for our sanity and his.

Wednesday we see the nephrologist for Garrett's repeated protein in his urine. Praying the urine sample we turned in Friday makes it through testing fast enough to be usable for Wednesday. Funny the things I pray about now!!

Spring has sprung!! Wheat is turning green here and the snow on the mountains is melting. Cows are giving us glimpses of the sweetest, tiniest calves, and the sheep are lambing and we are loving seeing all of the new life!! The geese are flying over so low and in such huge numbers it sounds like police sirens sometimes!! Our friends from church say the rafting season will swing into gear in a month or so, and we can't wait for them to take us out on white water! We hope to ski a couple more times before the ski season ends April 11. Now off to order Ainslee a more advanced phonics book, sign the girls up for kayak lessons and summer program, and then look for the rest of the doctors we need here.

Blessings and enjoy Spring!!

Saturday, March 19, 2011

Mom, the Dog is on the Roof!!!

Yep, that's right. Addie's small dog, Camper, was missing for a while today. Addie had him inside lounging with her while she did her school work, but then later we could not find him. Addie looked outside, inside, in each room, and then outside again. The last time she looked outside she was starting to get a little upset and then something caught her was Camper on the roof of our house!!! Looking back, I remember Garrett letting Camper out onto the balcony of our bonus room this morning, but I didn't think much about it once I asked Addie to put Camper out. She forgot to put him out and there he was........on the roof!! He had squeezed his fat little body though the railing slats but then could not come back through, so I had to lean over the balcony rail over the roof and grab him by the skin of his neck and hoist him back to normal dog-dom. Would love to have photos, but Camper kept looking like he might jump down to our yellow lab, Remi, so we hurried to get him back.

The funniest was watching how comfortable he was scampering to and fro way up on the roof!!!
Never say never, and tomorrow will surprise me with something new, too!!


P.S. This is a photo of Camper so you can get the mental photo of this on YOUR roof!!!

Friday, March 18, 2011

Neuro-psychology Evaluation Begins

Wednesday was our first appointment of two, 3-4 hour appointments for Garrett to have an evaluation with a neuro-psychologist who will then tabulate his testing scores and combine info to give us recommendations for Garrett's schooling and therapies.

It was a very long day. I thought, of course, that since she would be evaluating Garrett without me in the room for up to three hours, I might actually read a book a dear friend sent me. But nope, the doctor came out with three HUGE evaluations I had to do about Garrett.....and then there were two huge packets for me to complete for our future appointments with developmental pediatrics and neurology since we are new to this area and need those established. No reading. The young lady who is the neuro-psychologist offered a few very helpful pieces of advice regarding Garrett's IEP that expires mid-April as well as some things to ask about in his parent-teacher conference that was later in the the day. She also recommended some books for me to read. I ordered them as soon as I got if by some magic source, my simply ordering $47 worth of books might cure my child and make tomorrow better. Disillusionment once again. I digress.

Meanwhile, I needed to get Garrett next door from the appointment to the hospital lab for urine and bloodwork in preparation for next week's nephrology appointment for protein in Garrett's urine. No luck with the urine collection, but lots of luck pooping. I drive to the Medicaid office to turn in some further paperwork and then head to his school. He starts screaming, "I having a BIG POOP!!!" like he is scared for his life. Well, I should have been scared for mine!! When we finally pulled into his school parking lot with no time to spare, I unbuckled him, and as he climbed out of my Yukon and put his first two steps onto the pavement, I noticed puddles....of something brown....and a little smelly......OH MY GOSH, I have NEVER seen poop like that. It was running out from his shirt tail from his shoulders, down, all the way down the outside of BOTH legs of his nice, new khaki pants, pouring onto the pavement. Seriously? I got him to stand still by the car since we were by a very non-busy street, while I got wipes from the back of the car and tried to drain the poop enough from his shirt to be able to let him walk further. I walked into the school in tears where his angel of a teacher, Debbie, met me with a smile......and then a quite exasperated look!!! She took us to the restroom and this angel of a lady got on her hands and knees and started helping me undress Garrett before I could say a word.

The day had already been a very early start, a PhD telling me my son does NOT have Autism....okay, one more disagreeing professional...then to the VA to turn in some papers for Grouchy, then to the lab, then hanging out in a store waiting for Garrett to pee in a cup, but no, so then putting the urine bag on him and then is getting poop all over it. Gave up on urine for the day. Then to the Medicaid office where things were WAY too cluttered and time-wasting for just needing to drop off papers, then the poop, then the conference with good info but the feeling this battle is all up hill.

The neuro-psych did advise us to ALWAYS remain calm with and around Garrett. No physical punishment, no raised voices, no exasperated looks, nothing like what we are feeling on the inside when we are sooooooo frequently frustrated. I know she is evaluating him, but I get a sense she is going to continue her comments like she did that day........he has an abnormal brain, nothing we can compare it to, unique, unusual, going to take patience, time.......
I felt exhausted over the whole day, of course, then it was home to get the kids and hurry back to AWANA......and a late night out for that. My sweet husband realized the stress. I guess he could see me aging by the second, and offered to keep Garrett at home to get him in bed. I gladly accepted, although it was the night before Grouchy had to leave town for work. Hhhhmmm. We had talked about takign kids to AWANA and a date, but I have to tell you that our dates are, well, just not happening anymore.

We did take a positive step in the direction of our sanity per our own feelings, my therapist's input, the neuro-psych (who reminded us we are not hiring babysitters any longer, but respite we can have time away from this high needs member of the family) by hiring Ali's sister Shelby to come to our house after school each day and help out for 2-3 hours. Money. Grouchy tells me I have to let go and just know it is necessary to do these things or we will not make it through this with any amount of enjoyment or sanity. It's just against what I ever planned as a mom. I want to be WITH my children. I don't WANT to have to pay someone else to care for them. I AM THE MOM......shouldn't I be able to handle it?!?!? Truth is, I cannot and I am beginning to let go and see the benefit. Shelby isn't charging much at all, but it's just such a drastic feeling step to essentially hire a nanny to help me. She is a complete doll, and I trust her totally......Andrea, read this to her...ha!!!!!......and when she isn't needed to help with Garrett, I will get her to help me with household things or outdoor projects like MOVING ROCKS....ha!! No, I won't do that. But having Garrett SAFE where he can meander and play and go in and out of the house while I help the girls with school things, go for a quick jog, work horses or heifers with the kiddos, or just be home not having to devote every single second of Garrett's awake time to his constant supervision....whew, the weight has lifted some!!! I am excited about this new deal and hope it will help us all feel a little less stressed.

Spent today trying to get Garrett to pee in a cup again....remember he isn't potty trained at all. He finally did it at a friend's home during playdate, but then he got spazzy and slung his arm at me and knocked the specimen cup out of my hand and across the bathroom. I wanted to scream and get mad, but instead I started to cry. I just stayed there squatting in front of half-naked Garrett and cried. I don't think he has ever seen me cry. And I didn't plan to. It was just such a physical example of the defeat I constantly feel with him. But interesting things happened. He immediately got calm, rolled his bottom lip out, leaned to me for a hug and started sobbing!!! He asked me, "Why you cry?" I told him I was upset he made us have to start all over when it was a three day chore already. He said he was, "sa-wee" and loved on me. Then he peed in the cup even better. Sounds great, but we had about 30 minutes of a window to get it to the lab that was 35 minutes away, and oh, by the way, playdate wasn't over and I had to be mean mom and drag my kids out early. We dropped off the trophy-pee and headed to get take-out dinner, went to the YMCA to eat, then let Addie climb, Ainslee play and Garrett go into childcare for an hour.

And tonight, completely worn down in every way, I can say I never lost my cool with Garrett. He was not any better than usual, and was pretty tough in the car, but I held my cool.......on the outside. I now know why man invented the flask.....I could use one!!!!

Tomorrow, while usually a new day, new hope, refreshment from rest and sleep, is coming, but without promise of those things. It's like Groundhog Day. I know it will be tough again. I know I will want to scream and want things to be better, and I have officially realized "it ain't happen in'!!" But it will be tomorrow. God made it. God will take us away to paradise someday.


Tuesday, March 15, 2011

Happy Birthday and Goodbye!

Grouchy's mom, DiDi, flew in last week and planned to fly home this Thursday. She was changing one of Garrett's many nasty diapers yesterday and threw out her back, so she changed her itenerary and left this afternoon. Just two hours before Grouchy took her to the airport, I learned of her change of plans, so I cooked lunch and we made a birthday cake for her.....that she mailed the pans and mix to our house so we could make while she is here.....her birthday is this weekend. She is weird like me. We get along great. I love her!!!

Either way, we sang the birthday song as Grouchy sang over us the same tune but the words went something like, "We get rid of DiDi.......we get ride of DiDi......." Grouchy is the funniest guy he knows, still!!!!

Here's a photo of Addie and Ainslee with DiDi and her 5 second, on the way out the door birthday celebration. Oh, she went to our little town's chiopractor and got a donut pillow and some Aleve and flew back to Louisiana. Perplexing, truly. But since I am so much like her, I can somehow completely understand.......

Neuro-psychology appointment for a three hour eval early in the morning, dropping off some VA forms for Grouch in Boise, labs for Garrett's kidney doctor appointment that's next week, dropping off the rest of the paperwork to get Garrett covered by Medicaid, then parent-teacher conference tomorrow at 3:30 and then slide into AWANA and WalMart tomorrow night! Going to sleep now!



Sunday, March 13, 2011

Mattress, Or Not.


Grouchy and I have been blaming snow skiing for our recent back issues. We both wake in the morning in discomfort. I finally realized it is time for a new mattress. Ours has been flipped like a pancake ever quarter for about 10 years, and it's just TIME!!! So while DiDi, Grouchy's mom is here, we decided to head to Costco to get a new one. We called ahead and everything, had one held, and hit the road to Boise, just the two of us. We had productive discussion on a business idea I *really hope* works out, less is more concept, how we have to just get sitters for Garrett whenever we want to go anywhere besides church and his appointments, and finally had time to be alone and talk. Seems we might have more time than this to talk, but he is early to bed, early to rise, and I am on the opposite program. So it was nice to catch up. We made it to Costco 30 minutes before closing, grabbed some other items we needed, and went to check out. We bought the mattress and box springs and waited for someone to bring them up to the checkout area. I stayed there with the cart while Grouchy went to get the truck. As I stood by the mattress, I started noticing it was a Sealy Posturpedic mattress but had all sorts of references to "soft, memory foam, extra cushion, PLUSH!!" and I began to realize I was about to take home the same exact mattress Grouchy's mom had that I could not even go to sleep on...OOPS!!! We like a firm mattress, not a foofy one! I decided to mention this to Grouchy when he pulled up in the truck, but then he looked at me weird and said, "Wait, we don't need box springs, just the mattress." Well, I have had this same conversation with furniture stores and Costco, and as we say in the South, "It just ain't so!!!" Got to buy them together, no options there!! So we put all this info together, and between having something we didn't really want AND not being able to fit it in the truck, we promptly returned the mattress!
We came home and flipped our exhausted mattress one more time in hopes of getting a couple more nights' rest on it, and we may try shopping again this week. Such a ton of drama to get some sleep!!!

We are loving having DiDi here, but I am sure she is ready to leave!! We honestly wear out our moms and my dad with babysitting Garrett while they are here. My parents are planning to be here all summer......may never see them again after that, HA!!! Our families are so supportive and loving. I miss our LA family so much!!!! We have great help here with sitters, and I know if we were anywhere, we would have to be spending resources on sitters because you can only beg family for help so much!! But still, it's so nice to have family here in the guest house where Garrett can go between houses, eat both houses empty, entertain us with his jabber about what is going on in the guest house, and just have loved ones so close. And did I mention we have sitters readily available and completely captive???

Tomorrow Garrett is getting "cast" for new braces for his feet. He has had pre-fab ones right before he walked at 24 months of age, and then since about 2.5 years, he has had custom braces. His current pair is so big, and we don't know why. It's like his feet have gotten skinny or they were way too big to begin with, and I don't remember that. These come just above the ankle and are called an SMO. He had ones called AFOs once that went to the calf, and due to his knees locking some while walking, waddling gate and increased slouch in his upper back, we may go back to higher braces to the calf for a while to see if we get some positive change like we did when he had those last time. The higher you brace a child's legs, the more you lose below the braces, so he will not use his ankles as much, but we think the trade-offs to strengthen his core by using his legs correctly and helping straighten his back again as they did last go-round are worth it. Time will tell, and if we want to change the braces within 90 days of delivery, we can have them changed for free. Good deal, but then for $1,400, it better be good!!!

Wednesday will be a long, hopefully productive day. In the afternoon will be Garrett's parent-teacher conference. His IEP will have it's 3 year re-do the following week, and I expect his teacher will ask me what I would like to do with him next year. I plan to ask for kindergarten with a classroom with an aide or two. We will see what happens. Our country is so messed up right now with cuts in funding in areas where it is certainly not going to help people with needs, but I digress!! But before that, beginning at 8 am in Boise, Idaho, we have Garrett's first appointment with a neuropsychologist. We are told by the clinic to expect to be there 3-4 hours while they test and evaluate him, then they will talk with us. I think I will go solo or Grouchy's mom, DiDi, might go with me. I am looking forward to diving into the mental stuff, finally. I really never thought it would come to this. I thought we were dealing with delays, but now we are rapidly approaching Garrett's sixth birthday in July, and delays are really not what we have. We have him, the him we have. While I like appointments because I feel I am actively "doing something to help my son," I realize there will be no magic wands there, but at least there will be professionals who can maybe guide us. Today I began getting a sinking feeling about the appointment. What if I get hit with bigger bricks than I am still aching from now? What if we start really verbalizing, outside our family and close friends and blog, that our son is slow, disabled, retarted???? My soul sinks, my heart aches, and while I say I want to be real and face the facts so we can move forward and find the very best sitaution in our home and Garrett's educational environment, I would trade this any day for that non-walking 20 month old with his feeding tube, lack of words and sweet, sweet baby smile and simplicity. Funny, it didn't seem simple then, but compared to now.......

Tonight I go to bed on the flipside of our old mattress....perhaps a metaphor to be had. The flipside of my thinking is that things will be fine. Life is short. I am Garrett's mom. Someday we will be in Heaven with new bodies, brains, the same souls, and then, then for sure, I will meet my son the way God originally designed him......strong, funny, and completely sane. But then with some of my doubts and anger, I just hope I make it to meet him there. Our Sunday school lesson talked about having to have only a tiny bit of faith to be granted God's kingdom. I hope I understand that right. I do have faith, but it is so small sometimes. I feel like a little girl again, but this time without the dreams and hopes I had as a child. Now I hope we just do the best we can with all three of our children, leading them alongside Christ and letting them know we love them more than anything on earth!!!


Saturday, March 12, 2011

Family Fun

We had a wonderful week with dear friends! ! Our friends we met through Louisiana's MDA Camp when Ainsley (their Ainsley, not our Ainslee) was Addie's camp cabin mate, and we have enjoyed getting to know them and see our girls hang out and grow up together!!! For Mardi Gras, they flew here from Louisiana to vacation. They also brought their 13 year old daughter, and over time this past week as they stayed in the guest house our older girls hung out some and our younger ones enjoyed playing. We had a blast skiing, tubing, going on a sleigh ride, to a hot springs and exploring the shore of the Payette River, climbing and swimming at the YMCA, seeing Gnomeo and Juliette, and just being together!!! Here are photos of Addie, Ainslee, Ainsley and Angelle at the sleigh ride.
Garrett was in school in the mornings, and we either hired a sitter or Grouchy stayed behind to care for him so we could party hard with our friends. Everyone got to ski!! EVERYONE, including Ainsley, Addie's best buddy, who we were not sure had the strength and endurance to ski!!! Angelle, in just two days on the slopes, was skiing blue slopes and hanging with Addie!!! WHAT FUN for the girls, and of course us moms were delighted. We even took Addie and Angelle up to the ski slopes for two hours the last night they were her, but conditions were slushy, so not very fun. We drove down and enjoyed pizza at one of our new favorite places to end the night. We had some hairy moments with Garrett in the car with us and with Grouchy and I having to shuffle him between us with Grouchy taking the brunt of the pain. It is frustrating to have all the fun of friends here, but Garrett kicks into extra-loud mode then, and it feels wrong to subject anyone else to the chaos and insanity of him. But all in all it worked, and now Grouchy's mom is here for a week BUT she and Grouchy leave at the same time next week.....BOOOOOOO HOOOOOOO!!!!!!
Blessings to you all and prayers for the Mito children and the families whose Mito children have become angels the past weeks.

Monday, March 7, 2011

Meet Ali

God blesses us every day. Some days we are too blinded by our own obstacles or distractions or challenges, but tonight I want to introduce you to a blessing in our lives. We have always been blessed with AMAZING people to help us with our children such as our family members, Vera, Laramie, Michelle M., Lara, Neigh-Neigh, and many more. And every time we have moved or our life situation has changed, we have had help from our families BUT also many people who love our kiddos and help us so much with Garrett.

Meet Ali. Her father we met first, when he was the listing agent for the home we bought in Idaho and brought warm chocolate chip cookies to us a day after we arrived AND delivered AND set-up livestock panels so we had a place to put the two horses as soon as we arrived. I soon spoke to his wife Andrea on the phone and knew she was amazing. When I needed a sitter the first time in Idaho, I called Andrea, and she sent her daughter Ali. Wow. We soon realized she was the FFA chapter president AND works at our FAVORITE ice cream shop EVER, so Grouchy and the girls had already met her a couple of times before I did while they got ice cream!

Okay, then once when Ali was working, Andrea sent Kali, another of these amazing kids, to bebysit Garrett. WOW again!! So sweet, so fun and so comfortable around our craziness!! Then when both of those girls were busy, in comes Trent, the nicest 24 year old guy you have ever met!!! He enjoyed babysitting Garrett at least twice for us now!!! And he just got married Saturday....oh what a great father he will be!!! And I haven't even mentioned that now Andrea keeps Garrett for us almost once a week.....sometimes more.....while we spend time with Addie and Ainslee. SOOOOOO helpful and loving and amazing!!!
So here's Ali. She's sweet, beautiful, kind, confident, energetic, and FUN!!!! We talked her into skipping school a couple of times to ski with us, and she is a natural!!! She learned so fast, and we all had a great time. We are thankful God has provided yet another beautiful angel of a person to help us nurture our kiddos!!! The above photos are of Ali with Garrett, then Addie, then Ainslee, and these are not photos I shot, but ones she took and emailed to me!!!
We love you Ali, and we will never forget the others who have helped us so much. We love you too!!!
In thankfulness for those God places our lives on course with each season of our lives,

Tuesday, March 1, 2011

Building Fences

This morning Grouchy got Garrett onto the bus, we got the homeschool lessons all done for Addie and Ainslee, Garrett came home, we ate lunch and got Garrett down for a nap. As he napped, Grouchy and the girls and I headed out to build some fences. We had a couple different electric fence corrals that were for the horses when we first arrived, but now Adelaide and Beth (the heifers) are here, and Grouchy went to get more livestock panels and gates, we had to build some new space that will hold cows better. Those critters will run through fences, electric or not, and we don't need loose cows out in the Owyhee Mountains now!!!

What was so amazing was having the girls out there helping. They were taking insulators off of wooden and metal fence posts and getting good with screwdrivers and hammers!! I was so proud of them. And then there's my man, Grouchy. He is so strong and so thorough with things. He plans. He had this planned well, and it went smoothly. It felt so wonderful to be near him and getting something accomplished. I know I do a good bit of work, but it's usually perpetual work like teaching school lessons, laundry, dishes, cleaning, cooking......not many things where I can look back at the finished product and say, "Wow, it's DONE!!!" And I am a total Type A person who needs to see checks in the boxes!! And today I wasn't only getting a check in the box. I was with my family, working on our place, and it felt so NORMAL!!! Then back to reality of getting Garrett up and dressed and heading to town for Ainslee's gymnastics class and Garrett's swim therapy and sliding on the big slide with me!! Yep, I am now his pool therapist, too!! We had fun!

Building fences. I feel a metaphor coming on, but sleep is coming on faster. I will spare you tonight!!

Prayers for the mito families mourning tonight.