Saturday, May 28, 2011
With a diaper on, he will come to me with stool on his first and second finger on one hand and he will be SCREAMING, "I have POOOOOP. I don't like it!!!!" And waiting to change him is NOT an option because he is in a complete panic, screaming, jumping, crying. He is genuinely upset about having any poop. So I have him lie down on a towel on the floor or stand beside my chair so I can change him, and he will just have a tiny smudge of stool just starting to come out. It isn't a huge movement, just a tiny bit starting. And he is FREAKING OUT!!!!! I change him, and sometimes it can be up to another hour, but usually it is 3-6 diapers within 30 minutes, each time with his fingers with stool on them and him in a panic. He has never cared about having poop before, but it is like in a blink of an eye, this became a BIG sensory issue for him. Sometimes he doesn't put his hand into his diaper to get poop on his fingers, but usually he does. I tried to fuss at him, but it seemed to heighten the problem. SO I try to be all positive, but man is that a challenge because he wants to touch me with the poop on his hand. And when I tell him no, it's like I said YES instead as he becomes obsessed with touching me....and he isn't kidding or joking.
Then this evening as I was trying to get our dinner prepared and get the horses up into the corral from the pasture to get them off of the rich alfalfa which they had already had their evening hour, he came out screaming. By the time I could get the fence closed and get back into the house.....all the while Garrett sticking his head outside and freaking out.......he had his diaper off, poop on both of his feet, one hand, his shirt and ALL OVER HIS LEFT EYE!!!!!! It was horrible. I did pop his little leg when I saw the diaper was off. I have told him to leave his diaper on about 532 times in the past two weeks. I didn't lose my cool because I have learned that gets me NOwhere with Garrett, but I was controlled and disappointed in his eyes. "Mommy, don't be sad at me. Be happy!!!! Say CHEESE mom!!!" he said over and over. SO I have to stay positive and tell him how stinkin' happy I am whenever there is any tiny positive, or at least NOT a negative. So I changed him, ate my dinner with the permanent stench of poop on my hands, then gave him a bath and put him right to bed.
I never complained much at all about his poop. Shoot, I was just always thrilled to see he COULD still poop. But this is a new place, a not very good situation. Yes, I have thought maybe this is the beginning of toilet training. He has been doing #1 on the potty more, and some outdoors, and I am thankful, don't get me wrong. However, it all feels endless as this "mess" intensifies into bigger kid issues. And all of these things are so raw, more intensified, more disgusting, and more heartbreaking.
We went to McDonalds today, just Garrett and me, to play on the indoor playground. I was finishing a very good book about a mom and her son who had Autism. As I was reading, he was playing with 3-6 other kiddos his size but younger than him, but he was having a blast and not needing me at all. The poop started. He is in the top of the play deal looking down at me through the netting, no longer playing with his new pals, and he was yelling, "Mom, I have POOOOOP!!!!!! I didn't stick my hand in my diaper!!!!" And he was proud he hadn't gotten poop on his hand. And there I sat, trying to look happy and positive but dying inside as my almost 6 year old was screaming that across the play area and parents slipped little glances at both Garrett and me. So I went to the car, got the diaper bag, took him to the bath room to clean his tiny poop, then we did this three more times in 30 minutes before I called the playtime quits. It was exhausting, yes, I admit, embarrassing, and so obviously not normal. Sigh.
And then that book I was reading, Dancing With Max. It was a lovely book, pleasantly real and funny as I was allowed to be inside another mom's mind and he father's mind as they raised her son, Max. And I was getting to the end of the book today in McDonalds and did finish it, but the finish of the book didn't give me what I had hoped. I hoped I would find some ray of hope, some healing this child of hers received through her strong faith. While the book was very encouraging and I needed to hear her witness to my heart, in the end I put down the book feeling tired and no more hopeful. I realize that through her journey of 19 years with her son who is not going to be independent because of his Autism, SHE changed, grew, settled into her mission as his mom, giving up her career as an artist, always available and committed to his every need and care from day to day. And that's where I am not stepping up. Sure, there are times I feel completely at peace. I have made a path that has left my hobbies, interests and my possible loosely-planned future career ideas aside for caring for Garrett and home educating our two daughters, but to read that it doesn't change, but I change more to make it better....it just felt stupid. It felt like someone was telling me, "It's all on you. You just give in to this agape love, selfless, sacrificing, for the rest of this earthly life and SHA-BAM, you will be happy!!!! Ggggggrrrrrrr. I know, I know, I know, she is right. But I am just in the process of trying to pack for that trip. I haven't checked in online or reserved my seat yet. I am nervously staring at the suitcase, deciding what to pack to keep from my former life, what to leave behind of my future potential plans and wishing God would just come sit here on the bed beside me and pat me on the back or give me "that" look to show me He is for real and this is truly my path. I will get there. I have faith. I am just slow......apparently Garrett got that from me..HA!!!!
Wow, lots more to let out here than I planned tonight. All in all Garrett and I had a nice day. He was a pretty good guy in WalMart today. It was intense from a parenting standpoint, but it is the best he has done so far. And thankfully no poop in Wally World, YAY! I went to look at a horse to buy and he screamed in the Yukon for the three minutes I was out of the car. I won't try that again!! He did well leaving McDonalds, actually asking to leave when we left. So that was good. His tummy has slowed down again, and he is back on laxatives after a few months off. His new med, Focalin, isn't causing negative effects, but I am not sure I am seeing a significant ADHD improvement.
Okay, I really am going to bed now!! I am so looking forward to my parents arriving in a couple days and the rest of my household returning in a week. Gosh, I miss my husband and girls terribly.
Please pray that we can figure out how all of this will work. My parents are a huge part of the solution, at least for the summer, and then we have a business starting 2200 miles away, more time separated, more complication, but I think it will yield dreams fulfilled and possibilities expanded here or there or somewhere God sends us........I need BIG, FAT, OBVIOUS answers!!!!!!! I miss my hubby and girls!!!!!!!
Thursday, May 26, 2011
Another sensory issue came up today when we were driving home from the YMCA and he started screaming, "Why is this on my HAND??????" He had a half inch splinter in the palm of his hand just barely under the skin. I pulled over to see it and could not squeeze it out, and he was going even more nuts. So the next block I pulled into Walgreens Pharmacy and grabbed cotton, hydrogen peroxide and some really sharp tweezers. He went crazy in the car, but I was able to get most of it. He still stayed upset for a while, but there was no way we could have made the 13 mile drive with the splinter in his hand. He was absolutely in a terror and rage. It was so sad.
In the above situations and more each day, I am feeling more peace. I have been praying for God to help me feel more compassion for Garrett and get back onto his team, not my own. And God is working in my heart, moving my thoughts and motives and loyalties back where they belong. I am home alone with Garrett today, and I had time to observe his little world more, truly watch and listen. He had a horrible couple of hours after our nap today. And he woke this morning at 4:30 and really didn't go back to sleep. I have not had my hubby and other two kiddos here, and it has given me more time to focus on Garrett and listen to his needs. First, I note how much more intense his needs are than I ever acknowledged. He truly needs someone almost every minute. Second, God showed me more how confused and frustrated Garrett is trying to live in the world. He isn't trying to be upset or bad. That takes TONS of energy, and no one would choose to live like he lives. Third, like the psychologist and developmental pediatrician tell us, he NEEEEEEEEDS lots of positive reinforcement. He thrives on it......any attention, really, even negative attention. But as I spoke with him today, he reveled in the positive, and I saw some god results. I also saw how in tune he is with my emotions and reactions. Wow, profound.
Tomorrow will be another nice, mild day here. Garrett and I plan to hang out at home with me getting some projects finished and him playing in his hills of sand in the back yard. I have been invited to a friend's home for dinner with her friends, and I got in touch with a new respire caregiver who just graduated from high school and plans to go into elementary special education. Wow, great fit, and I have met this sweet gal already in another setting in town. So tomorrow will be nice at home, and I have a fun social evening to look forward to and a new sitter to help out here and there as needed.
I miss my sweet daughters who are still in Louisiana. However, I am enjoying getting their rooms super-clean and the bathrooms all spotless. Easier when there is no one using them!!!!!
Prayers for all the Mito kiddos and Autistic kiddos tonight who just don't ever really fit into the "normal" of this world.
My parents are coming very soon.....YAY!!!!!!!
Wednesday, May 25, 2011
Today, a dump truck brought six loads of sand to our ranchette to give us good surface for our round pen where we work our horses. But for Garrett, it was HEAVEN!!! He loved watching the sand dump, but then he took his dump truck out and started his own work!! It was very, very windy and a little cool today, and then it will be cool tomorrow, but hopefully less windy so my construction pal can enjoy playing in his piles of sand all day!!! If it's not nice outside, we will probably drive a half hour to a fun indoor play place with bunches of inflatable bouncy things and lots and lots of trampolines.
I am having fun putting the finishing touches on the bunkhouse in our barn. My parents will be here soon and staying through SEPTEMBER!!! HUGE, HUGE, HUGE!!!!!! I can't wait to just hug their necks and probably cry my eyes out. It's been an emotional past year with each of my parents losing their last living parents, the terrible devastation of the tornadoes in their area, and then Garrett......just so much changing and morphing in our lives and our world. I look forward to lots of quality and quantity time with two of the biggest blessings in my life. Ever since we have had our kiddos, when my parents have come to see us, we have usually used that time to take off for some couple time. And don't get me wrong...we LOVED that time as husband and wife, but that meant we were not spending that much time with my parents. Then when I would go visit them, it was usually for only 5-7 days, and it was time spend zooming here and there and all we could to visit family and old friends. SO when we would get home from those visits, we usually needed a vacation!! And my parents will likely need a vacation, a serious one after a summer with us!!
Oh, and the other news. I have glasses now!! I know, not that big for news, but I have never had them before. I am AMAZED how crisp and clear things are suppose to be!!!! Truly a relief!! Now blogging even feels better!!
On a really, truly disgusting note, another online friend, who I have also spoken to in person who lost a son to Mito this year, has had to stop blogging because some JACK @%# STOLE HER DEAD SON'S information and CLAIMED HIM ON THEIR TAXES!!!!! HOW STUPID, HEARTLESS, AND WEAK of the LOSER who has caused this sweet, mourning family even MORE pain and trouble. So here is my comment on this from my perspective: If you read this and have any intent to harm me or my family, I will hunt you down......and I am very, very, very persistent when I set my mind, and I have a handgun. I'm just sayin'!!!!
Okay, back to the lighter side. Off to bed as soon as my recorded American Idol episode ends, naming the Idol for this season. I have never watched it before this season, but our family has truly enjoyed following the only show we have ever really followed. It's funny how on our two hour per week television diet we have gotten to follow a series!! Fun!
Last, Garrett's teacher, Debbie, came over for a home visit and to bring Garrett's end of the year book and some of his belongings. We had a nice visit, but I cried through most of it. This lady, Debbie, is totally an angel and gave so much to our son this past year. I cried like this when Garrett left his amazing teacher in Louisiana AND when he finished his preschool year. I am so deeply humbled by these teachers who are completely dedicated, way underpaid and too unappreciated. I plan to have Debbie and the rest of her staff over for a back porch luncheon after my parents arrive. I am hoping to throw together some goody bags or some type of gifts for them......I will gladly take recommendations!!!
Wow, I was full of words tonight!
Blessings to you and yours, and thank you for your comments and thoughts and prayers and calls.
Friday, May 20, 2011
Garrett was wonderful in the car today. It was one of those days where I get home and have some hope. Of course then he gets home and starts digging poop out of his diaper and panicking when he has any tiny bit of stool.....
Grouchy and Garrett napped, and I got my mountain bike out and ended up blowing up two tubes trying to change from road to trail tires. I gave up and used Grouchy's bike. Earlier today I bought Addie and Ainslee used TREK bikes from a used sporting goods store that had gotten the bikes from the same ski resort my skis came from in Jackson, Wyoming! Kind of fun!!!So not the girls can get rid of their girly, WalMart bikes and learn to shift gears and enjoy the efficiency and ride of a front suspension ride. Now to get my bike worked on and get new tubes....
I got the bike wagon out that I pull, and after Ainslee and I rode the three mile loop of our "block" and stopped by our friend's house to see about riding in his newly constructed arena, I then came home and hooked up the bike wagon deal and took Garrett for another 3 mile block. My was that a workout!! He weighs 40 pounds, but there are a few hills and it was a little windy!!! But he held up well, and I was thankful for another good workout and a nice time with him. Then we came home and there was more poop on hands and screaming about poop. But I will take all the bad for the good we had today!
So tomorrow we will try the new med. Wish us luck!!
Thursday, May 19, 2011
Sometimes moments make me smile, and smile BIG!!! The was one of those last week!!! Amidst all of the frustration, reality, heartbreak and challenge of our current life situation with our son, there are moments that are so special and cause me to stop to count my blessings. Ainslee is the most amazing 8 year old I know, and I am so blessed to get the opportunity to live under this roof with her. Grouchy and I enjoyed an evening out with just our Ainslee tonight. She always likes Outback for dinner...my favorite!! We also enjoyed watching her in her gymnastics classes tonight. She is doing so well!!!
And today she had a checkup by her pediatrician, and Grouchy stayed home (THANK YOU!!!!) with Garrett while Ainslee ran more errands and had so much fun just being "us girls." I love her, adore her, cannot get enough of her sweet blue eyes, contagious laugh, heavenly smile and sweet, sweet snuggles!!!!
Tuesday, May 17, 2011
But this isn't the only change. We (Grouchy, Garrett's teacher and aides, and I) think we are seeing him experience some regression. Garrett is talking more...using more words, longer sentences, making more statements that make more sense, but I think we have mistaken this improvement with cognitive improvement, but we all think we are wrong. He is processing less and less. He still gets confused when he says YES or NO.....and doesn't even fully know which one to use much of the time. He will say one but mean the other, sometimes going back and forth several times before we figure out what he means. Last week he brought me one of the kittens with a bloody face (kitten, not Garrett), and he could not tell me what happened. Not only could he not tell me what happened, but he couldn't seem to even understand what I was asking. Blank looks, no ideas. Then he also threw up in bed one evening after we tucked him in for the night. He threw up because of this gagging thing he is into. I sat on his bed and remained very calm although I was at my very weakest, most exhausted point of the day. I tried to talk to him about it to explain the gagging causing him to throw up and asking him him why there was throw up in bed to see if he could understand he had caused the throw up by the gagging. But he was seriously clueless. Looked at me like I had asked him to give me a lecture on thermodynamics. It was very sad to see him search my face for what I wanted, to honestly be engaged and paying attention but not even be able to offer a word. I could see the confusion, then the blank stare. I think he is losing some of his ability to process.
I also think we have mistaken mental ability for his using more words. The truth is that he is using more words out of hearing things over and over from others. We are a very chatty household, especially the girls and me, and many of the things he can say, I am not figuring out, are things he has just learned by repetition. Much of this is very good because he is learning new things to say, but it really doesn't go along with his understanding or processing abilities.
What is really sobering is to hear Grouchy bring up the fact that he thinks Garrett is "slipping away from us." He thinks he is getting skinnier again, is very concerned about his physical abilities and now mental things even more, and then the sleep yesterday put an exclamation point on the whole deal and scared us.
He was okay for the first hour or so at school today, but then he kind of checked out for the day, mentally. His last regular school day was today, and then tomorrow is the end of year field trip to an indoor hot springs pool complete with a potluck lunch. Fun!!!
So big sigh that school is out and we have Garrett all of the time. I plan to use our sitter more now he will be home all the time. Also, I think I finished Medicaid application process for the second time this year, and the advocacy group I am talking to says he should get about 5 hours weekly of behavioral therapy and 22 hours per week of developmental assistance....can't remember the word, but basically they pick him up and take him to work on educational stuff, do fun things, or go out into the community and learn to interact more appropriately. It may be glorified childcare, and while I wish like hell we could use these hours to crack his egg and help him snap into our planet, I fear this is the beginning of looking for ways to have him in someone else's care so we can survive.
Today was one of the worst for me so far. It's way too exhausting to live it, then far too complicated to put into words. But Ainslee and I ran errands with Garrett this morning when he got off his bus. Since Ainslee left her McDonalds chocolate milk on the seat beside Garrett's car seat in my Yukon (she had McDonalds for breakfast as a treat as she and I had to spend another hour or three at the Medicaid office for the second day), Garrett thought (or maybe he didn't think at all, more likely) he should open the milk and sling the milk all over my Yukon. That led to cleaning the entire inside of my car BEFORE I could drive into our little town three miles away to get printed versions of my bank accounts dated May 1st for this Medicaid stuff. We ate lunch at a little place in town and headed home for the hour and a half Garrett could nap before I had to take him to therapy and Ainslee to gymnastics and then back to pick up form for Medicaid from the pediatrician and drop it back off at Medicaid. And the little dude WOULD NOT go to sleep.......I know, probably slept too much the night before....but I needed him to nap, too. I needed him to be down and honestly was so mentally zapped that I could have used a nap myself since I knew we had a car ride and long evening ahead. And for the second day of naptime I wept and begged God to save everyone from this. It's just so unfair.
I am trying to keep Garrett separate from his issues, as I blogged last time, but it is just so hard to completely separate the person from the behavior. And tonight, as I have for three nights now, I spent time kneeling by his bed begging God to help me fall in love with Garrett again and to not get frustrated with him for things he has no desire to do. I just feel like I am so down on my little dude, and he deserves so much more. Like today, for instance, I climbed into my bed with him for naptime with a drill instructor attitude, and it didn't help anything. He needs me to be tender with him. I have to try harder to hold it together, stretch my energy farther, and just love him.......love him deeply. Love him like a mom should.
Tuesday, May 10, 2011
This will be a contemplative, perhaps confusing, maybe venting, post.......so there's the disclaimer!
My mind is raging a battle ever waking second of every day I am with our son, Garrett. He is my heart. He is amazing. He is beautiful. He is not normal. When I am alone with him, he seems to be more settled and calm, but with the addition of any other input, it adds to his stress load. His school occupational therapist, who is rapidly becoming one of my favorites, put it very clearly to me in the IEP meeting last week. She said, "We all have to keep in mind that every bit of input coming into Garrett's brain enters as an emergency." Wow, did that help me understand better. But while my understanding deepened, it did not change the fact that this is all SO frustrating to try to parent.....and understand......and even love sometimes. This does NOT mean I don't love Garrett. It does, however, mean that I absolutely detest, loathe, hate and despise the war waged on my son's brain and in my own heart and mind.
Let me share some typical monologues I hear from Garrett over and over and over and over and over and over and over and over and over every day:
- Are you stupid? People are not stupid. You not stupid. Why we don't say stupid?
- POOP!!! I say POOP! We don't say poop? Babies say POOP?
- Mom, I like you. I don't like you. Whey we don't say like baby says I don't like you?
- I hate you!!! Why we don't say I hate you. Baby says that? Well I hate you.
- Do you have poop inside you? Do I have poop inside me? Why we have poop inside us? I have poop inside me? I wear diaper. Baby wears diaper. (and he walks up to strangers and asks this over and over)
- I gag myself. (then he puts his hand down his throat and gags himself.....going on two months now, many times each day) Why we don't gag myself? I gag myself. (then last night he ended up gagging himself while in his bed for the night until he threw up. His bed had a wet place on it and I asked what happened, and we had a "nowhere discussion" where nothing made sense and he looked at me like I was speaking another language. SOOOOO DEPRESSING!!! And the psychologist tells us to ignore the gagging. Well that was fine except that this gagging deal is now causing him to throw up, so we ignore it? Today I pinched him and fussed at him about it.....it didn't help. It's like if you correct him, he obsesses more and does the behavior more. SO F#%&ing INSANE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)
- I hit myself. I not hit myself. I do. I hit myself?
- Mom, I don't like you.......... (honestly, as much as I know he is retarded in his brain and he truly does not WANT to be like this, this phrase over and over and over at least three times a day HURTS!!!!!!! It really, really hurts.)
These above little monologues are plenty, but add to this his outburst of loud noises, screaming, screaming and all in the car to hitting, pushing and kicking Addie and Ainslee without his being able to take our correction, and I end up a very frustrated, unwound, frazzled, defeated human. The day can be clicking past pretty well and I am thinking, "Wow, today has been a good day. Garrett has been pretty easy. The girls are doing so well with him and are sooooooo helpful, kind and loving, and I am actually getting some things done around the house and outside. But then BAM!!!!! I go to change another overflowing, huge, stinky diaper and here comes another crazy monologue:
- I touch my poop? I kick you? I touch poop!!!! (and tried to dig into his crack while poop is dripping off of his bottom as I am trying to change his diaper) You get mad I touch my poop. What you do I touch my poop? You sad. What you do to me? You pop me? MOOOOOOOOOMMMMMM, you listen to me! I touch my poop!! Why I not kick you. I hurt you? (and I have tried ignoring this talk, but when I do, he becomes more agitated and presses harder, wanting more and more attention.)
Over and over and over all day. And although this thought of separation has been evolving in my tiny free space in my mind, today it really became apparent. It is SO terribly frustrating on a daily basis to hear things over and over and over and not see it get better. It is literally insane, retarded, whatever you want to call it. I find myself getting so angry inside, so angry that it is overwhelming and scary.......and the most likely subject of my anger is Garrett. Then I realize I am feeling angry when the blood pressure rises and my emotions build. Next, I remember to remember that Garrett doesn't ever CHOOSE this path in his life. He doesn't TRY to be retarded or slow or irritating. So then my anger is basically discounted, completely negated because the normal course of directing anger towards the source of the irritation cannot work here, I fall. I fall completely flat on my face with my heart completely smashed beneath my heap of human inability and uselessness. It is then I hit the very bottom. Usually I am trying to buckle kicking Garrett into his seat as he hits me or I am bent over his very disgusting diaper elbow-deep in poop......and I just buckle to tears, trying my best not to let him see me get upset because that brings another whole monologue of insanity. "Mom, you not happy. Say cheese!! You happy now!!" Sh#%, were it only that f&%$ing simple, dude!!!!!!!!
Please pardon my French tonight. It's just me. I am real, this is raw truth, and it feels like it is endless. I honestly cannot see my son "snapping out, maturing past this or catching up," ever........ever. He is almost six. My almost 5 year old nephew can count to 120 or more. My son can sometimes count to ten and not usually do it using manipulatives. I am not comparing....just sharing the difference in benchmarks for my son's capabilities. My son is not toilet trained, although he is showing interest, I can tell you this will be at least a three year project with things like they are with him. He cannot help it. But gosh is this frustrating.
I have still had a good day today, really. I can have a great day but still sit here and share the insanity of the previous day. All in all, I know I am a better person, a more patient mom, and a much less selfish person. These are all good things. I am just having a hard time swallowing the long term manifestations of this disease and its impact on my child's brain. It's just hard. It's painful. It's our life. It seems to be this way indefinitely........I just hope I can go the distance. I have been running again about three days a week, and I think it is helping me to do that. But it's not like anything I do can help make things better with Garrett. I just go and go and push and wait and pray and research..........and start over again each day but have those crippling, crumpling human moments at least once to five times per day. I get right there to tears, then have to snap out of it. It's funny that in my past 36 years, I can say I have felt helpless, completely frustrated and somewhat hopeless about something maybe once per year, and it was always a sort term situation. But now it is usually multiple times each day. Dumbfounding. Perplexing, and I will wake up to it again tomorrow.
No, I do not want to lose my son to Mitochondrial Disease and the likely future that his health will decline well before the average person's. I want him to live, quirks, insanity and all. I just cannot promise I won't need my own drugs and straight jacket before it's all over!!!
There you are. My honesty. Your entertainment. Your kindness.......please, your prayers!!!
Sunday, May 8, 2011
I am so proud to be called Mom by these three angels!!!!
May 6, 2011 Addie 10, Ainslee 8, Garrett 5
Special prayers for moms who have lost children, children experiencing Mother's Day without moms,moms serving in our military and moms who parent alone while their husbands defend our freedom. Godspeed to them all.
Saturday, May 7, 2011
A few evenings ago while Ainslee was out feeding the horses and cows their evening grain and I was scooping manure (not that much of a clean freak here as I am trying to keep the fly population down!!), Ainslee took off running from the front porch of our guest house/barn where we have several small alfalfa bales stacked out of the rain (we use rain very loosely around here.....you will see people putting on rainsuits when the "rain" isn't even enough to wet my hair.....). She was headed to the house screaming, "Addie, WE HAVE A KITTEN!!!!!!!!!" Squeeling at the top of her lungs as she was running, she was hard to understand, but I finally got it!! So Addie came out to investigate and Ainslee found another!!! Names are still pending along with gender confirmation we will get Monday when they go to the vet for shots. Garrett calls them his "babies," and wants to push and carry them everywhere!!! So far the dogs are scared of them!! These kittens were just what we needed.....in many ways. Sure, we can always use more mouse patrol out here in the farm country, but more than that, they brought new life, smiles, loads of giggles, and fresh new responsibility for Addie and Ainslee. These two critters were such a blessing while Grouchy is working in Alaska, and it made the time pass more quickly. God's tiniest creations are usually my favorites....
Friday, May 6, 2011
My parents will be here in Idaho with my kiddos.
I have an AMAZINGLY generous, kind friend who gave us some buddy passes for an airline!!
I booked my hotel room for a couple of nights in Chicago.
I registered with the UMDF for the two day conference...
I get to go to Chicago all my myself to the United Mitochondrial Disease Symposium in June!!! I am just giddy thinking of finally getting to sit with all of the experts in Mito and hear them and talk to them and pick their brains.........but even more exciting than that is that I finally get to hug the necks of so many other moms who I have gotten to know and love through a couple of message boards on the internet. I am just too excited!!!!! I think I have a roomie as well, so that will be fun!!!! All that's left is renting a car!! And another bonus is that I will stay a couple nights after the conference to visit with the same friends who gave me the buddy pass!!!! SWEEEET!!! The flights are pretty full Sunday and Monday, so I may get three nights with them. How cool would that be??
So barring any unforeseen medical issues with us or travel issues with my parents, I will see some of you in Chicago in June!!! Looking forward to good friends, loads of information, and just some plain old down time!!!!
Wednesday, May 4, 2011
Garrett will be six in July. His transition meeting was held at the local elementary school today with his current special ed staff and therapists and the new team at the elementary school including the principal and the nurse and all his new therapists. I had prayed we would have more angels sent our way to help our son, and I got MORE THAN I EXPECTED!!!! These women are SAINTS!!!!! Everyone was receptive. I geeked-out and made a notebook deal for each person complete with his IQ scores, GI letter explaining his inability to be potty trained at this time, other standardized testing from the psychologist, detailed info from his developmental pediatrician, and tons and tons of great info from MitoAction and the United Mitochondrial Disease Foundation. So I went into it like a business meeting, complete with photos of Garrett so everyone knew his sweet face. They were all thankful to get so much information and even promised to watch the MitoAction videos to become even more educated about Mitochondrial Disease. The school nurse had even heard of Mito and wanted to know what type he has....that's a cool deal!!!
One at a time we introduced ourselves and then the current therapists gave me their testing results from weeks of testing him. Bottom line is that in the physical area, he was scoring 2-3 year of age, and in speech and occupational therapy area, reading readiness, and pretty much everything else, he is three. Three to three and a half. So interesting because many, many times when asked to describe Garrett, I have said he is like having a three year old.....but triplets!!! So he is like three on red Koolaid!!! Seriously, I have said he was three forever. So three he is, for what seems like forever now. SO he is stalled at half of his age in all areas, and physically he is under three. Hhhmmmm. Okay, swallow that. Once again, just hearing what I can say from others is, well, hard. But good and real and necessary and truthful.
SO I went into the meeting as the psychologist recommended, gunning for full day school and a one to one aide, and it didn't work, but it couldn't possibly work. Bottom line is that Garrett is three, not ready to be in a three hour kindergarten class in rural Idaho where reading is heavily taught....for two blocks of time...one 45 minutes and another an hour. Then there is math for a half hour. We talked about trying to place him there, but then it became apparent that there is no way we can expect that from Garrett or the teachers or the other students. He would hate school, always be a disturbance, and never be able to keep up, much less pay attention for that long. So then we came back to the day program I had observed a few months ago. It has more affected kiddos in it.....from moderately impaired to severely affected. I spent a couple of hours in that class observing and meeting the aides and the AMAZINGLY WONDERFUL main teacher Jannel. I loved her from minute #1....and her son, Baylor, is in Garrett's class and will be in her class next year. While at first I thought Garrett would not do well because of not enough "normal" kiddos to model. However, once Jannel explained how one of her three aides would be able to take Garrett to parts of the regular class and the special activities and resource room for extra one on one help. I started feeling it. Jannel was so excited to have Garrett coming to her class....seriously, y'all, this woman is AMAZING!!!!!!!!!!! And I am completely in love with her son Baylor. And if nothing else comes Garrett's way for a job, I am most certain he would gladly push Baylor's wheelchair around for the rest of our boys' lives!!!! So sweet!!
Problem, though. The psychologist wants Garrett in a full day program so he learns more, catches up some, etc. The neuro and developmental pediatrician also agree and add we need Garrett to be in school all day for our sanity as well. Agreed. But there is only a half day kindergarten. But wait, everyone chimes in that there are several local organizations that Medicaid will help him get into that will do behavioral therapies with him. So other kiddos in Jannel's class are picked up by these organizations after their first or second half of the day classes at the elementary school, then take him for more one on one including help with his school work with coordination of those folks and his teachers through his IEP. They can also take him out in public to stores, restaurants, etc., to help him learn better how to react as normal folks react.
SO there, full day, did it. But then there was the question as to whether he should take a break at him for a couple of hours after morning kindergarten (we all agreed the first half of the day is best for classroom opportunities for learning) for a nap and lunch or if he should be picked up from school and carry on through the afternoon. We will have to see on that one.
So it wasn't a big surprise as far as what was available, but it was a surprise the comfort and people God placed in my life during this process today. I am humbled and thankful.
Meanwhile, the emotions.....the emotions. Garrett is one of "those" people. He is one of those who will be navigating WalMart with a personal aide to teach him to act normally. He will be one of "those" people in one of "those" vans with other of "those" like him. This may not makes sense to anyone but me......but it is real. Garrett isn't normal. He probably will never be normal. He is first grade age this fall and he cannot even go into a grade (if you call Kindergarten a grade) below his age. Shoot, he cannot even handle it ten minutes........
My umph is gone. I used it all up preparing neat handouts and all for the meeting and wondering what would happen. Thought I would be fighting to get him in school in Kindergarten all day with a one to one aide, and he isn't anywhere near being able to pull that off yet. If ever. We are here. Wherever you go, there you are......words from an old country music song. And we are here. And where is there? We have no idea where this leads, what the future will take us....Garrett.....or how long we will have him.
Got to keep our heads in the clouds...IN THE CLOUDS....looking to God and being thankful and realizing that while we are on Earth, we are his caregivers and he is our angel. Looking forward to a great school year next year with a team that is concerned about his health and education but even as much or more about his enjoying school, having fun, and being a little boy who LEARNS better how to deal with the life HE lives.
Thank you for your prayers and your encouragement. Each of your comments, calls, emails, and texts keep me motivated. We are so loved, and your love overflows onto our precious boy. And can I pause here to tell you how amazingly well Addie and Ainslee are being with their complicated, difficult brother??? Since we have taken to a more gentle and quiet approach with Garrett, we have seen amazing love and patience with the girls. I am so darn proud of these two. They are my heroes....along with Garrett.
Wow, that was long.....