As in Izzys daily life we had an up, down, in between day. But mostly up. I drug her (almost literally) out of bed this morning to get to Llama Showmanship and when we arrived just outside the barn, Izzy decided she couldn’t do it. So we headed back to the car and back toward home. She was tired, she was anxious and let’s be honest… showmanship sucks! It’s boring and hard and she has to talk with the judge and that’s intimidating. I was grateful to her for deciding before we even went into the barn. And I was proud of myself for accepting her decision with no angst. Winning.

We went back home and she slept for 3 hours. She obviously made a good decision!

When we headed back we got to meet up with a fellow trich friend. A beautiful little girl who is bald like Izzy and who Izzy has gotten to know thanks to a Facebook support group us moms are in. They saw the rabbits, all of izzys projects, and joined us to watch Izzy in the llama obstacle class and her cat show. What a treat!

Today’s llama obstacle class was tough. A couple obstacles that Nutter Butter doesn’t like and one Izzy doesn’t like. They did a good job, worked together, even went first in her class. She shines out there, even when they have a rough course. It’s one of my favorite things to watch-her working through a tough obstacle or a refusal or enjoying an obstacle that goes perfect. And a unexpected positive out of Thursday’s pretty public meltdown and anxiety attack is that a number of llama kids AND parents now know us, know Izzys issues and have become very supportive of both Izzy and me. It’s refreshing.

Izzy and Jake showed in the cat show this afternoon. Jake may not be the cat show kind of cat…he apparently spent his time before his turn determining the best escape route. And he sure tried his best to make it out of there! I laughed until I cried and Izzy didn’t get upset or frustrated. She simply said “Well… that was embarrassing.” Classic Izzy.

Tomorrow Izzy shows Snowflake the Hedgehog in the pocket pet show and of course barn duty for llamas. A more relaxing day should lay ahead for us. Only two days left.

Today was a vastly different day from yesterday. We were up early for 730am llama chore duty and I knew when we got to the fair and Izzy jumped out of the car and headed to the barn without me that we had a different outlook on today. Thank God.

The rabbit show was today. The nice thing (for me) with the rabbit show is that since I’m not a leader, I technically can’t go in the barn, so Izzy has to rely on herself, Jackson, the leaders and other rabbit kids. It’s a mixed bag for me if I’m honest: I can’t help the kids, but I also really want to know that the kids are preparing and ready to get their rabbits to the show tables!

Both kids did great. Each got a best in breed! So that was fun! And Izzy took her two DQ’s in stride without being upset. And her amazing 2nd/3rd grade teacher came to see her which always brings a smile to her face. Izzys Llama obstacle for today was scheduled for about 4pm. We left the fair for awhile to get some lunch and cool down. And we returned about 3:30. She put Nutters harness on him, told me she was nervous and then went to do the walk through with the rest of the beginner group. While she did that, I leashed up Nutter and walked him to the show shoot. She grabbed his leash, got in line and hugged his neck… whispering to him to help her get through the course. And ya know what? He did just that. He did everything she asked of him and they were an awesome team! I think the best part of the whole thing…the whoops and hollers, the clapping and cheering from so many when they finished. And Marilyn and Aubrie meeting her at the finish to tell her how proud they were. And the smile and palpable relief pouring off Izzy.

She ended her evening helping with being able to feed the cria a bottle. And she volunteered for the public event for Walk a Llama. She interacted with people she didn’t know!

What a difference a day makes for anyone, but especially a little girl with autism and adhd and anxiety. Look at that picture of Izzy and Nutter Butter up top…look at NBs face…I swear he’s smiling for his girl.

Day 1 of the 2019 4H fair is over. A day of highs and lows. A blue ribbon for fine art and cake baking, a blue with honors for crafts and a Reserve Grand Champion for Health Family emergency kit! She was flying high this morning.

And then it was Llama Pack Obstacle. And the anxiety started. She was sick to her stomach. But she got control of it while the Seniors showed, she got ready. Boots on, wig on, Nutter Butter harnessed and lead on. Nutter Butter tied to the gate and waiting. And then it came roaring back. Fast. Hard. She started getting angry, didn’t want me to talk. Didn’t want me to be silent. Didn’t want me there but wouldn’t let me leave. Doesn’t want me to touch her. And doesn’t like any idea I have. This is where I struggle most and it’s also where Izzy needs me to be able to have my shit together most. It sucks. So so much.

This is when Izzy goes from frustrated to angry to raging in 2.2seconds. We call it IITARBSA in therapy (Izzy is ticked and raging because she’s anxious).

This is when Izzy curses. This is when Izzy throws things and calls me words I would have never thought about calling my mom. This is where I have to close my eyes, take a deep breath and say a prayer. See it gets worse if I cry. She hates it when I cry. She knows I’m crying because of her and it makes everything worse. But I’m a crier. Always have been; Always will be. I’ve gotten better at taking my emotion out of the situation so I’m kind of numb. But not today. I wanted this for her so badly. I wanted her to go out in that show ring and strut her stuff with Nutter Butter. It physically hurt me that she couldn’t make herself do it.

The llama seniors who know Izzy well had Nutter waiting for her at the gate and the llama leader tried everything to get Izzy to do the course. But we couldn’t help her. She was gone into a place I have never been in my own mind and where I cannot reach her to make things bearable for her.

So she didn’t show today. I know it’s not the end of the world. I know many of you think “so what” it’s not that big of a deal. But for Izzy, she’s been working toward this for a year. And her crappy anxiety took it from her.

Within minutes of leaving the barn, she was sorrowful and apologetic. I couldn’t accept her apologies for the words and name calling immediately–she really hurt me with that today. Maybe embarrassed is a better way to put it. But we went our separate ways for a couple hours this evening at the fair and came back together tonight with love and hugs and a fresh start. She repeatedly told me how sorry she was…Don’t be sorry to me baby girl–don’t be sorry to anyone. You fight battles daily that most adults I know couldn’t, or wouldn’t, fight. You lost this one…but you’ll come back at it tomorrow and we’ll plan better, fight harder and we’ll win. Together.

The psychiatrist visit at the end of June brought Izzy a change in meds. A non-stimulant med to see if it helps with the trich, while managing the adhd, trying to increase her appetite and giving her an opportunity to be more herself. She’s been on it for two and a half weeks now; wehad to slowly dose up to her therapeutic level, and the dr warned the first few weeks might be tough. But honestly, these past couple weeks have been refreshing.

Pulling has been the least it’s been since October. She’s eating…like she actually says “I’m hungry” and she is more social!

Yesterday was a bad pulling day. She pulled three small spots bald yesterday. She can’t tell me why yesterday was worse-but I can guess. The 4H fair is two days away. School is two weeks away. She’s starting to feel anxious. But also excited…and that excited part is what we’re choosing to focus on.

OT/Speech is going really well. She’s learning how to express herself, she’s labeling emotions, she’s starting to talk and think through the situation she finds herself in instead of jumping right into panic mode. We are finding some strategies to use in school. It’s been a great experience so far and Izzy loves it!

So keep her in your prayers over the next couple weeks leading us through 4H and into the start of school!

We’re off to show those rabbits, llamas, cat and hedgehog!!!

Wow-summer is FLYING by! Almost 1/2 over and still so much We want to do! Izzy couldn’t make herself go to summer camp, so we cancelled the 4 weeks we’d scheduled for that. And she’s spending her days sleeping, playing in her phone, taking care of her new kitten and making slime. Gah-there’s slime in varying states of preparation everywhere!

Tomorrow we go to meet a Psychiatrist. I’m gonna ask for meds that fix: ADHD, Anxiety, Autism and Trichotillomania. She should be able to fix us right up…ha! Only in my dreams!

She’s still pulling hair. From all over her body. She isn’t pulling as often, but if she’s stressed it’s her first line of defense. I anticipate more pulling as school gets closer. She asked me yesterday if there’s a cure for trich. Believe me, if there was, I’d have already scaled the highest mountain or walked across fire to get it for you, kid. It opened us up for a good conversation though. She said she isn’t sad that she pulls and she doesn’t miss her hair. She likes being bald and wearing wigs because it’s “so much easier” than her real hair was. Then she asked me if I was sad she pulls….yeah, I’m saddened by that, but it makes me less sad knowing Iz seems ok with it (right now anyway).

I see big changes in Izzy, even since school ended 4 weeks ago. She’s been doing OT/speech at an office who specialize in sensory and autism kiddos. She’s opening up to them, and she’s really enjoying it. She isn’t nearly as hostile. She is more willing to listen and compromise than she’s ever been in her life. She realizes quickly when she’s over reacted and she will sincerely apologize when she has.

She has also found her birth sister. And in Abi, she has found a friend and confidant. Tonight they FaceTimed for a long time. I hear Izzy laughing and being her true self with Abi. I see a friendship blooming. Maybe they will be better friends because they don’t live together than they would be if they did. We are meeting them for dinner and to hang out on Friday evening and I know Izzy is really looking forward to it. I heard them talking about having a sleepover and I heard Izzy tell Abi that it would have to be here because her anxiety would “flip it’s lid” if she tried to sleep over at someone else’s house. I love that this relationship is beginning. Izzy has asked Abi some hard questions, and Abi has given Izzy some insight on her birth dad. If I’m 100% honest it makes me a little anxious-I don’t want Izzy to wish she wasn’t adopted. But I’m choosing to look at it as her getting the best of both worlds.

We have 4 days of school left until summer vacation. 4 days left of elementary. 4 days left of the known. She’s been really positive about leaving North and heading to middle school. But then we had her big 5th grade field trip on Friday and being on this field trip we’ve talked about since the beginning of the year she has realized the end of 5th grade is here. And her stomach is hurting and her pulling is frequent. Breaks my heart. She was doing so well. But it’s just a valley.

I expect this summer to be full of peaks and valleys. To be honest, we have peaks and valleys in the course of every day. She has quiet days at home, swimming with no hair (it’s fine in a hotel-I wonder how she’ll do at our community pool), Llama Jamboree, College visits with Bubby, Conner Prairie camps, 4H Fair all ahead of her this summer, and possibly the largest transition of her life at the end of all of that.

But first, 4 last days of 5th grade. Tuesday holds Careers on wheels, Wednesday is Field Day (she hates field day LOL!), Thursday is awards day and walking the halls of North and Friday the kickball tourney and 5th grade party. It’s a fun filled week. Let’s pray she can enjoy it

I leaned over to pick something up this morning and when I rose up, apparently with the force of a herd of elephants, I cracked my head on the corner of our mule chest, causing an inch long “gash” on my scalp. I remember dropping to the floor thinking I might pass out and reaching up to see what I did and pulling my hand away to see it covered in blood. I didn’t scream and I didn’t cry…I didn’t even curse! But I did bleed. And bleed and bleed. And I also scared Izzy more than she’s maybe ever been scared.

I realized a little too late that this was a situation that her Autistic and Anxiety ridden brain couldn’t handle. She literally panicked, but also kept her head enough to think maybe she should call 911. I talked her out of that, opting to call my Dad and Mom instead. And I realized, as my scalp was bleeding more than I’ve ever experienced, that I had to keep my cool because my girl wasn’t able to keep hers. How would I have felt at 11 if my mom was bleeding from the head and I was the only other person home at the time. I would have panicked and I don’t have any of the issues Izzy has! I told her I was going to go downstairs to call my boss, and wait on nana and papa. She screamed at me to just “go to the damn hospital!” I tried to keep our morning rolling by making her some breakfast and calling her to come downstairs to which she screamed “maybe I would if you’d go to the damn hospital!”

After my head was taken care of, and my mom and dad headed back home, I went up to show Izzy that I was fine and to see about getting her to school. All she could say was that I gave her PTSD and she was so mad at me for hurting myself. I was taken aback and a little annoyed at her blaming me for getting hurt. And then I realized, her seeing me, her person, hurt and bleeding from the head had to be terrifying. I know it was terrifying because when I got home from work tonight, she was still scared and my sink had lots of tiny little peach fuzz hairs in it. My accident made her so upset she pulled, and pulled hard, because she didn’t know how else to handle it. Breaks my heart. But ya know what makes me proud? She pulled herself together and made herself go to school…because she’s the bravest little girl I know.

It’s Mother’s Day. My husband told me Happy Mother’s Day first words out of his mouth today. I woke up to several texts from friends wishing me a happy day. Jackson said it after a couple hours of us being up. Izzy hasn’t said it. I don’t even think she knows today is Mother’s Day. She made me an amazing craft in her classroom at school and couldn’t wait to give it to me, so she presented me with it on Friday. I love it. I truly do. But I wanted her to say the words to me today. That sounds rotten and selfish. I know it does. But her knowing nothing of the date, having no concept of anything outside of her phone and her tiny little safety bubble really made me sad today. I often feel like I’m failing her and not meeting her needs and three little words, “happy Mother’s Day” would make me smile. And then this evening she sent me a little 5 second video she made. A video of a little goth-looking girl with a speech bubble that said “Mom…..I don’t like you…..” and then the little goth girl turns into a little girl with wide open arms and a huge smile and red hearts all over yelling “I LOVE YOU!” That was my Happy Mother’s Day wish from Izzy. And that made me smile.

The week we just finished was a busy one. Not a rough one necessarily, but a draining week. Izzy and I had her OT Eval, and they “diagnosed” her with Sensory Processing Disorder and recommended OT once a week. I knew that was coming, I expected that. And Friday I had her IEP Case Conference. An IEP conference is a hard thing to sit through as a parent. There were 6 amazing professionals and me around that table. And they all talked about my girl and what she struggles with and what she needs. It’s a barrel of mixed emotions as a mom. Here are these wonderful educators talking about my girl–first the positives, then everything my girl can’t do, then everyone’s goals for her. I kept thinking we should have done this for her earlier, but we didn’t and she has thrived despite that because she had a 504 and she had people who worked their asses off to make sure she succeeded. She thrived because she was in the safe arms of these fabulous women and men of North Elem. I sat there and listened and wondered how we will do this in three short weeks. How we will make this huge transition to middle school and to people who don’t know my girl, who don’t love her or accept her. I guess we do it by putting our fears and faith in God and going at it one day at a time… just like we did when she arrived at North Elem and Mrs. Krent swept her under her wing and lead her away. Someone will be there to take her under their wing and lead her forward to her next phase of life.

I have felt really down since Izzys autism diagnosis. She has a list of diagnoses as long as she is tall. The diagnoses along with her leaving North and Jackson entering his Senior year really gave me down. I don’t worry about Jackson. He’ll no doubt have an amazing senior year. But I do worry about Izzy. Preteen and teen years are tough enough without all this that she has to deal with in addition to the hormones and drama of the middle school years. But I have to remind myself that for every challenge she has, she has tenfold that in strength. She is the strongest kid I’ve ever met. God will take care of her through me as her mama bear and through the village she leaves behind and the one she’s about to meet.

This Mother’s Day, I thank God for my babies. I wouldn’t give either of them up for the world. I am a better person because of them…whether they say the words “Happy Mother’s Day” or not.

For the last month in therapy, Brad has been asking us to draw our family as planets. Creating a VonBlon solar system. Everyone has made their solar system but me, although in true Kira style, I’ve been thinking a lot about what my VonBlon solar system looks like. My solar system includes planets shaped like a puzzle piece, a peace sign, a rock (more like a boulder) and a mama bear. Those who know us certainly know who is who.

My puzzle piece got her puzzle piece diagnosis this past week. It’s funny how you think you’re ready for a diagnosis, until you GET the diagnosis. Something about seeing the words “Autism Spectrum Disorder” on a report that makes it all so much more real. Real and forever. A forever diagnosis. A diagnosis that explains why she’s different, but doesn’t make living with the hard parts of her difference any easier. A diagnosis that gives her an IEP at school and a possible Medicaid Waiver from the government and a host of therapy opportunities, but doesn’t make the heartbreak any less or the work ahead of us any easier. A diagnosis she will carry with her every day. Along with the diagnoses of ADHD, anxiety, depression and trichotillomania. That’s a lot to carry for one child. Although she is a strong, resilient child she is still a child.

My to do list for Izzy is long, our options many and our village stepping into action. I have to contact IN Medicaid (God help me), figure out the best autism-based therapy, and help get her IEP written while continuing to get her to BrainPaint and family therapy, llama rabbits and cat workshops for 4H, and help her finish her 5th grade assignments, activities and responsibilities. But on the top of my list is I just have to keep loving her, supporting her, and finding ways to make her life easier.

In the meantime our VonBlon solar system–the puzzle piece, the peace sign, our rock and mama bear–just put one foot in front of the other. Always moving forward. Together.

I have always been one to live by the clock. I’ll count down the hours until I have to be somewhere and then count down the hours until I get to go back home. My girl is the exact opposite. She has no concept of time. It’s part of her Executive Function Disorder. And it has caused her and me countless arguments. In 38 hours, I get to go see Dr. Sanders and listen to her observations of and diagnoses for Izzy. I get to find out Izzys IQ, confirm her anxiety and ADHD diagnoses, and anticipate a couple new diagnoses. I get to talk about and listen to advice on all of Izzys Executive Function issues. I get to hear Dr. Sanders recommendations for the girl who challenges me on the daily and who recently has upped the ante and started showing signs of entering puberty (God help us all!). I get to hear how her trichotillomania fits into her diagnoses and most importantly I get to hear how I can best help and advocate most effectively for my girl. I then get to take that info to her school village and then we together get to work toward a better, more comprehensive plan for her middle school transition.

Only 37 hours and 50 minutes left to wait.