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.

Izzys real hair wig needs washed, conditioned and moisturized weekly. So today was my first day to do that. So while she created slime at the kitchen island, I stood at the kitchen sink and washed her hair. And it made me sad. I’ve really come a long way in accepting and loving Izzy’s bald head, but I still hate the trich that made her bald. And washing her beautiful “head” of hair in my kitchen sink just really sucked. And putting it on a wig stand and drying it there really really sucked. I am mourning her hair tonight. Her beautiful blonde curly hair.

About 8 weeks ago Izzy and I went to The Hair Club Indy to measure her head and choose hair colors for a real hair wig. They offer this amazing program for children who have hair loss due to cancer, alopecia, trichotillamania etc… we had to have a pediatrician order for the hair, but that was it in terms of eligibility. They make and give the kiddo three wigs a year (and each one can be different color and style totally determined by the child) and salon products to care for the wig plus their professional services completely free of charge until they are 18 yrs old. Seemingly nothing is free in this world–but this program is completely, 100% free. And wonderful.

Izzys hair arrived while we were in NYC, but they worked us in quickly when we returned. So last night we went to get the hair cut and styled. Izzy was excited. She’s grown to love her wigs and even has said frequently to me that she may stay bald forever bc it’s “easier.”

We walked into Hair Club chatting and in good moods. The beautiful coordinator came and brought us cookies and chips and sodas and took us back to meet Debbie, Izzys stylist. Moods still good.

And then Debbie showed Izzy her real human hair wig, all washed and ready to be cut. And Debbie attempted to put it on Izzys head. And Izzy shut down. For those of you who have never seen it, when Izzy shuts down she won’t talk. She grunts. She glares. She flips me off and calls me jerk. She answers every question with “I don’t know” and she almost literally curls into a ball.

Debbie gave us a few minutes and as I’ve learned, I asked one question: “Are we done here? Because this is all up to you and there’s no wrong answer” And she cried. And cried. And cried some more. And then she slowly unfolded and said that she wanted it but she was scared. The human hair freaked her out and she didn’t like the feeling of it being wet on her head. Ok…I can work with that.

I have slowly and painfully learned that when Izzy shuts down, she feels powerless and scared and I need to somehow give her back some control. And so when Debbie came back, I asked if we had to do it today, if we could come back, or even if we could take it and have my stylist Annie cut and style it. Debbie was so ok with anything Izzy needed. And then offered to cut it on a mannequin head how Izzy wanted it done and dry it and send it home with us to try in the comfort of Izzys house. Winner winner chicken dinner!

As she cut and styled it, she asked Izzy questions about life and Izzy answered some and I answered the rest (because I refuse to let someone’s question of Izzy go unanswered–I’m working on that with CounselorBrad) Izzy told her she has 34 pets, but then wouldn’t tell her why! Lol!

We went to dinner after the hair appointment to celebrate Izzys 1/2 birthday and swear to God Almighty when we walked in, the host said to Izzy “you have the most beautiful hair!” Todd and I nearly burst out laughing and Izzy beamed. Thanks God for that boost of confidence for our girl.

She wore her wig to school today. My report from her awesome teacher was she pulled from the wig during gym 😱 and she was very preoccupied with the wig which lead to pulling from her head and not very good focus today. Change is hard…even exciting change.

Izzy here….And Yes, calypso drums. The most awesome instrument ever. I wish I played it. But I don’t. You may be wondering why all this talk of calypso drums….the reason is because I saw a man playing calypso drums in the subway in New York City. Can you believe that? People play music in the subway. They play down there to try and make money I guess. Calypso Drum Guy was awesome; he was really good at what he did. And I bet he made a lot of money. He was my favorite thing in NYC. Calypso drum guy and the mouse….Aunt Tina said it was a rat tho.

Kira here: we took her to amazing places in NYC and the man playing calypso music and a subway rat were her favorites….next vacation I’ll just buy her some reggae music and a mouse and have her sit in the garage for awhile. 😂

We arrived home today from our week in the big cities of Boston and NYC. It was a great week, full of history, post high school possibilities, enjoyable food and incredible sites to explore. It was also a week of what I call encouragement and Izzy calls nagging (put your phone down Iz, catch up with us Iz, time to get up/go/get on the train/get off the train Iz), constant chatter, tight sleeping quarters, walking miles in the city and cold windy weather. We bargained, sassed, exploded, apologized, laughed, teased, loved. I watched Izzy pace and pull hair when she was anxious; curb her temper as well as let loose and explode. I watched Jackson confidently explore and take charge of subway routes and walking routes like a pro. I saw a son who could thrive in the big city and a daughter who would sink there. I saw faces of excitement, fear, happiness, annoyance and every facial expression in between. And I will tuck all those memories away to revisit them over and over again. I pray my kids do the same.

Izzy spent her week with headphones on listening to music or playing her favorite games. It was frustrating to me at times because I kept thinking she was missing out on things she should have been seeing, but last night she came to me and said “Mama, thanks for taking us to Boston and NYC. I know I was on my phone a lot and you didn’t always like that, but when I wasn’t, the city was really overwhelming to me. It’s a lot more busy there than home and it made my busy mind go even busier.” She didn’t sleep at all last night and I wonder if it wasn’t her brains reaction to all of the stimuli of the last week.

So now we’re in the home stretch to summer. 3 more days of Spring Break followed by 8 weeks of school and then we will have a Senior and a 6th grader. Between now and then we have Izzys Psychology Eval that begins today, results of that eval and hopefully the writing of her IEP for middle school.

I’ve been dreading this last quarter of elementary school for, well, for years. But I need to start showing excitement not dread for Middle School for Izzys sake. And so that’s what I’m going to do. I can’t say I won’t be emotional as we wrap up elementary school-that would be an outright lie-but I can help build her excitement and of course continue to advocate for Izzys needs before we get there.

We’re off to start the Psych Eval. Prayers for Izzys peace and cooperation…and some good results.