As none of us could have ever imagined life without Travis, the last nine months have not been easy. In fact, I think I make it through most weeks because I have to, and sometimes I have to wonder where that extra energy came from to get me through that week.
The Asperger's Diagnosis at age 34, helped put a lot of things into perspective about myself, which in turn helps me be a better mom to Montana, and more understanding to Dacotah when he is having a meltdown and feeling overwhelmed. I could go back and write something about everything that happened each month, but I know most family and friends follow us on Facebook, so I'm just going to update in a nutshell the best I can remember. I had a concussion in November and so my brain hasn't fully recovered and I forget a lot, but it's going to continue to improve.
Montana finished fifth grade and went to 4-H camp for the first time last summer. She had a blast with her friends but really hated telling them bye. She's struggled with losing her dad, and we found that she has inattentive adhd and is also possibly on the spectrum. She's super talented in music, she can play both the flute and clarinet. Seriously this child picked my clarinet up and learned how to play it herself in less than three hours. So I decided to build on that and she's taking lessons with Dr. Fryett and his wife Susie at Music Masters on Wednesdays. Montana loves it, and wants to memorize every song the band plays and will practice it over and over until she has it perfected. She spends Tuesday evenings with Robotics. I have purchased us an Arduino and a Raspberry Pi 4 to play with, but she's more interested in playing with Dash. In October we went on a mommy and me trip with our Canadian Mom aka Beppe to Hogwarts at Universal Studios in Orlando for her birthday. We had a wonderful time together. Montana had no idea that we were going on a plane until I pulled into the parking lot at the airport. Mom for the win! Sixth grade has thrown some curve balls as she hit the preteen mood swings, missing her dad, feeling alone, and trying to figure out where she fits in. Sadly, I know where that's headed because those of us on the spectrum never really fit in. We mask enough so people can tell we are different, but in the end we have a hard time figuring out the normals in life. Perhaps that is not the case for Montana, and it may indeed be far fetched, but honestly at this point if someone tells me she's also on the spectrum, I would not be surprised in the least. Her Therapist mentioned it a few weeks back that she has some red flags that were concerning enough to have her tested. Time will tell.
Dacotah started Kindergarten this year, let's just say there was a lot of SCREAMING, KICKING, PUNCHING, THROWING, and yes, even running out of the school. It was awful to say the least. We had more bruises on us, my neighbor had a busted nose where he threw his shoe not wanting to go to school, the child safety locks had to be engaged in the vehicles to keep him from unbuckling and opening the door while it was in motion. We tried everything including separate drop off and pick up times. Finally they started him on Abilify and that's helped some in addition to his social story that tells him what to expect. The school team also started using visual schedules and count down timers and hoped it would help.
We followed up on his seizures and found that he has a chiari malformation with a 13mm herniation and a 2mm syrnix that runs from C3-T1. Presently I have anything to do with that on hold. I am still trying to figure out what symptoms it's actually causing, and holding onto hope that as he grows, it will resolve on it's own. His seizures are under control with CBD oil from Viridipharm. Thankfully he hasn't had anymore but his MRI shows he has mesial temporal sclerosis, so from the neurologist standpoint as long as the CBD is working he is 100% on board with using it since anti-seizure meds aren't helpful and he would need surgery to correct the sclerosis. *fingers crossed*.
Dacotah had an updated ADOS-2 completed which shows he is Autistic Level 2 without intellectual disability with language impairment. That testing helped me get him full help on his IEP where he is now listed with Multiple Disabilities and it allows him to learn things visually, extra timers, more help with reading etc. It was a LOOOOOONG Battle with the school up until the meetings in February and I can say finally after three years, VICTORY was achieved. My son will get the help that he needs going forward.
The hardest decision I've had to make without his dad here, was asking for him to be held back in Kindergarten. It was a tough, gut wrenching choice, but Dacotah isn't passing Kindergarten. After the first 9 weeks he was at 61%, I didn't even bother adding up the 2nd 9 weeks because it was just confirming that as the class moved forward he was getting further behind. So during his IEP that are changing some of his educational plan to include FastForward (a reading program) and they are changing him from sight words (he read's words as individual letters so go to him, is g-o or o-g if his dyslexia is hard at work that day) to CVC words. We'll update how that goes as it continues.
Holidays were especially more difficult, but there were so many positives. Dacotah enjoyed dressing up for Halloween, and lasted a good while trick or treating this year. Despite it being super windy and oh soooo cold. Montana got to enjoy her last year. I told her that at 13, she can have a small party here at home and give out candy to the little ones if she would like. Thanksgiving my dad came up. It wasn't the same without Travis here, or us going to his family for football. In fact, I didn't watch a single football game this year, the thought of watching UT or Duke play without Travis made/makes me nauseous. I miss him so much.
Christmas oh my goodness, we had to make changes, so I put the tree up in the den, so it would be different. Montana was the first one up, who woke me up. I called my dad, who was just getting up, and I"m trying to keep her calm enough to wait until my dad made the 40 minute drive before she went crashing into Dacotah's room (aka my room). He was so excited this year about Santa, and he was fully able to comprehend that Santa coming means there will be more gifts under the tree on Christmas morning. My dad made it, Montana grabbed Dacotah out of bed, and they both took off for the den. Again, I wish their daddy could have been here, it was WONDERFUL. They had a great time. I enjoyed time with my dad and was thankful that we were all able to be together.
The day after Christmas Jean, Wes, Ashley, Caleb, and Cason all came up to celebrate "Pickell Christmas" with us. It too was bittersweet. We had a wonderful time being together. The cousins had a blast playing together, while us adults talked about the memories we had, what we hoped for in the future, and our goal to always let them remember Travis and let them grow up together. Montana rode down to Lenior City with them and spent some of her Christmas break with her great Aunt Gaye. She had a wonderful time. So, Christmas break came and went. It was different, it was difficult, but we had new routines, new traditions, and most of all our family was still together remembering.
Next weekend we get to share little man's 6th birthday. Let me tell you this and hear it clear, this is the FIRST birthday that our son has EVER been excited about. Previously he has left the room, we have had 3 birthday parties at the fire department (maybe 2 or 4, I honestly don't remember). But this year he told me (Over the course of two months, he's pieced it all together)
Mom my birthday is soon. I will be 6 years old. This year I get a real cake from the store. I want the number six on it. I was ummm 20 candles on it. I want Spiderman and I want Burger King and oh my friends too.
It started with a cake with just the number 6. Finally after working with him he wanted Spiderman on it with 20 candles. lol He wants chocolate cake and real icing and he wants his friends there too! Dear sweet child, I will gladly give you a birthday party, and I can't wait to see you enjoy it for the first time in 6 years. I love you baby boy, and you are going to do AMAZING THINGS.
