I haven’t had the inclination to write lately. Most of the my thoughts are random snippets in time with some making me giggle, some blush, and others should be banished to the basement.
Larkin is in school and it’s been a bit of a struggle. I stood back and let the school figure her out because they are new to her and she is a puzzle for sure. Moms know all but it’s best to let those who want to try new things be allowed to bring items to the surface that maybe I hadn’t considered.
A team meeting brought a lot of things to the surface but the biggest thus far has been that Larkin’s needs are not being met and the IEP has to start from scratch. Good times. Neat. Wish you were here?
Her present levels of performance are way off so we begin anew next Tuesday with a team meeting along with a few outside people I have asked for help. I have no doubt we will do what is appropriate for Larkin but I have to tell you …. this stuff is exhausting.
Larkin’s SLP works so well with her and has figured out how to reach her with music. Their relationship is amazing and the notes home show language development, choices, and a child engaged in learning. We will work to let that drive the rest of her curriculum and see what comes.
Larkin will be going back to St Louis Children’s hospital in November for another scan of the brain to see how things are. If things are still stable or improved her docs will begin a wean of her last medication for seizures. That also sits in the back of my mind because every scan and every change brings different news and it’s not always good. I have to trust and know that to take her off the medication is the best path but again the unknown is so very difficult and stepping out on the ledge is something you would think I am used to ~ but I am not.
The twins are sleeping right now so I have taken this time to spill out the random thoughts and update those who are wondering about how life is going. As soon as I typed that sentence E entered the kitchen asking for milk and breakfast. HA so much for my time to write in peace.
My days are spent between joy & heartache. The twins are amazing with their language and skills always emerging. B & E have surpassed Larkin in many ways and that makes my heart leap with joy simply because I don’t take anything for granted however it’s a dash of ache to have a constant within the home of how delayed things are for L.
The Lennox-Gastaut foundation made a documentary about LGS and I have shared that with her school team and on my facebook. You can see it here I cried off and on thru it because I simply have forgotten just how hard things were for 4 years for our family and for Larkin. The fear is stored in some dark recess of my brain but hearing other parents and doctors validate just how terrifying, unknown, and damaging LGS is …… makes the elephant sit on my chest again.
I am cool with the elephant and I will shove him off eventually because life is moving at a rapid pace. I have to be “ALL IN” for my children and husband ~ and for the YMCA. If you haven’t seen the pictures of the facility please “like” the Champaign County YMCA page on facebook. I post them weekly along with other updates.
Andy and I got away for a long weekend to Kohler Wisconsin and it was truly amazing. Now that I have had some sleep and my body is back to being mine I feel more connected to him and our relationship has returned to a more typical husband/wife vs caregiver exhaustion. He is a rock for me is so many ways and I am so thankful he is my partner in this troubled world.
Can anyone tell me how to get all parents who drop off their children at school to understand how a circle drive works?
I love the commercial where the dad is acting like a teenager, wearing a hoodie, and talking to his daughters boyfriend online.
I watched a woman in Panera come unglued because they didn’t have her special order ready. I watched as the staff handled her with total grace & kindness even as she further berated them for not having sliced her bagel correctly.
I kept staring at her and wondered what had happened to her to cause such an extreme reaction because this life has taught me to not judge someone based upon a moment in time. Thinking to myself that I wished my biggest problem in life was a sliced bagel and then stopped myself because I do have a darn good life, I said a little prayer for her to have peace within ~ but I did want to lean over and say “it’s just a bagel” ~ I’m a work in progress people.
The last random thought to share is about the playroom. My girlfriend Laura has teased me about toys being kept in the playroom and organizing it just so. I know to an outside eye it may seem funny and a never ending cycle in futility BUT I have a child with a disorganized brain. Our playroom is set up so that she remembers where things are, how to get them, and how they work.
I came home from our long weekend and I hadn’t been in the playroom for a while to ensure things were organized and I almost started to actually cry because everything was such a mess. Now to a typical household it was clean and everything was put away but to Larkin it was a disorganized mess where toys were stored in random areas, books stuffed into baskets, and dolls were with farm animals.
I spent a few hours cleaning things out, sorting animals and dolls, ensuring all the food pieces are together and in the fridge in arranged manner ~ probably makes me seem like Sleeping with the Enemy but I have to keep things organized for her. The toy room is her classroom. The toys and her ability to find them in a way that is planned out for a disorganized brain is one of the ways I can help Larkin learn.
Every child needs an organized space in order to learn and play. Every worker needs an organized desk and some type of pattern in order to work efficiently. Every cook needs a clean kitchen and organized ingredients to make a perfect dish.
So if you see me thru the front window sorting the pigs from the play cell phones ~ I’m alright. It’s a good way to keep that elephant from compressing my chest too hard.