Unexpected Changes and So Many Decisions

Dacotah is growing taller I swear by the day. Which also means he is getting stronger. Don’t get me wrong I want him to grow and be tall like his dad. I also know that means the meltdowns are getting scarier because it’s harder for me to restrain him to keep us all safe. We had to officially retire Loki from his service dog responsibilities due to the increasing pain and instability from his joint OCD. He can barely jump up on the couch now and loading and unloading from the SUV is all but impossible. So that’s been a change I wasn’t quite ready for because he helps redirect Dacotah and blocks him from running off when he’s done with a situation. 

When Dacotah makes his mind up about doing something he is 1000% determined to do it. There is no stopping to assess if it’s dangerous. Elopement into the neighboring cow fields have become a daily occurrence. I wish I could say it’s gotten easier, I mean I guess the fact he can talk and tell me I’m going to visit my cow friends as he runs for the door does make it easier. At least he’s not sneaking out but he has a very hard time waiting. For a kid who was NEVER supposed to talk he never STOPS talking!!!! That is such a blessing and a curse lol. But him talking does make things easier because after he calms down he’s able to tell me why the meltdowns happen now unless his anxiety takes over and he shuts down and doesn’t remember. 

That’s kind of two fold because he needs a visual schedule, he needs a time, and transitions are easier. However, when he wants/needs something from me or his sister it’s IMMEDIATE Demand… which is exhausting. 

The last few weeks of school it was very hit and miss on if his anxiety would let him get on the bus to get there. If I drove him, he refused to go inside the school. Trust me we sat outside 3 hours one day and he still wouldn’t go inside. So I started brainstorming for the upcoming year on how we were gonna be able to do third grade.

Don’t you hate when you know what’s happening and then halfway through the summer get notified that staff is changing??? So Mrs. M is being transferred to the middle school. Which means there’s a new life skills teacher coming to the primary and from I know they are straight out of college! A part of me wants to immediately argue for a one on one aide for Dacotah but that would honestly take an act of congress because it would be easier to send him to a different school 45 minutes away from home! Ummm yeah he can barely stand the bus ride to the school 15 minutes from home so how is that supposed to work? 

I asked Dacotah his opinion because to me it does matter. He says he is excited for third grade and wants to be in class with his peers. This too is bittersweet because as much as I want him to be on par with the other 3rd graders, he is still mentally around 1st grade in play and behavior which annoys the same aged peers. 

So I’m at a crossroad of:

Do I ask for an aide?  Do we try the life skills classroom as previously done? Do we opt for a home base option? Do we consider home school again? Do we try the school 45 minutes away? Do we opt for mainstream classes with more accommodations? 

I won’t lie, these are HARD questions to which I have no clue what the right answer is. I would love to say everything is going to be 100% perfect this year. But honestly I still have PTSD from dropping him off during the middle of a meltdown. Someone mentioned having the SRO talk to him…it took everything in me not to laugh because Dacotah doesn’t differentiate between a teacher and policeman vs stranger. To him they all talk at the same level and have the same authority… vs his peer sees the SRO and immediately breaks down in tears of please don’t take me to jail. 

I would love to say everything is absolutely hands down going to be perfect. Unfortunately due to some personal health problems things slowed down for us a lot over the summer. Perhaps it was better this way so we can all process the upcoming changes that is about to hit us in the next few weeks! At the same time it gives this momma a lot of time to overthink! 

But as I’ve always said, I am thankful for the small steps forward and know that he is going to do amazing things! 

 New School for Dacotah

When Covid hit, the schools shut down, kids were sent home, and despite losing several months of the school year, kids were automatically transferred to the following grade. When I asked to hold Dacotah back, I was told it wasn't an option. He would have to go onto first grade, although developmentally he was no where near ready. His separation anxiety still wrecked havoc at drop off, he screamed and cried not wanting to go to school. So being a widowed mom I decided to work from home and homeschool him the best I could. 

August 2021-January 2022, we reviewed things he should have learned in Kindergarten. There were good days but honestly the bad outweighed them. He hated to sit still for more than five minutes. We had therapy 4 days a week 45 minutes away from 3:30-5:30 to help him build social skills, and behavior skills, we still had angry meltdowns, but we stayed patient. Every day we would pass a small primary school on our way to therapy that's 15 minutes from our house. In December 2022, Dacotah said, "I go to that school, peas mom". I reminded him that it was a big school with a lot of noise, a lot of kids, and that maybe some day we would try public school again. He was persistent over that month "I go, its not loud, I want to play on big playground with kids". 

So I talked it over with his therapist, talked it over with Dacotah about the expectations, and we agreed to give it a trial run. So in January when the kids went back from Christmas break, we went to the school and talked to the receptionist. I explained that Dacotah had an IEP from his previous school, his diagnoses, and she said "Can you bring him back next week and someone will be here to talk to you?" I thought to myself "Okay, this is going to be....Great! (sarcasm)". I was in for the surprise of my life: 

We show up that day, Dacotah is all smiles and we walk into the office. We are sent to the Principals office and inside was OT, Speech, the life skills teacher, and we were welcomed to have a seat. While I was discussing how we were doing in homeschool, Dacotah kept getting louder "I want to go now, can I go to my class now, peas". I don't remember who took him, but he was so excited. I explained his diagnoses, his behavior issues, his toiletry needs, his eating habits etc. No one looked at me as though I had three heads. Instead they all took notes and said let's meet back up in two weeks to get him a new IEP set up, that'll give us time to evaluate where he is currently and let us get to know him better. 

I left the school that day without a sense of dread. I was nervous true, but I was hopeful since it was Dacotah's idea. 

Fast Forward: we had his IEP meeting, he acclimated the best he could at the time, and we adapted as needed so he was able to be successful. We continued therapy four days a week, until around mid March of 2022 because it made the days INCREDIBLY LONG for Dacotah. That too was a hard decision because every single one of his therapist have played a major role in his life. Somewhere deep down, I knew this was the best choice, and so we withdrew with the option to return if needed. 

Three Years Since the Last Post (Not Dacotah specific): 

Let me start by saying, I had no idea it had been three years. I guess I do a quick update on Facebook and continue onward. Covid hit, the world all but shutdown, we moved, the kids changed school, everything changed. As anyone on the spectrum knows, change is harder on those with Asperger's, Autism, ADHD, etc. We were not immune but maybe from here on I can do a little better with updating more than every three years. 

Life with a special needs child is unique on so many levels. Their needs are different from their same aged peers. Dacotah's not exempt. Change of routine is hard for him. We moved back into my home place in 2020 with my dad. My dad has lived in the basement since I was around 13 years old, so we have the entire upstairs. The upstairs still includes furniture from when my mom was alive, and dad being 78 doesn't want it donated, given away, etc., he wants it to stay but finally agreed in the past two months I can put it in the storage building so we have room for our stuff. This will allow me to put the therapy swing back up, fix up the keyboard (Dacotah loves them), and make a playroom so when company does come over, everyone still has their space. 

I cannot go back and put all three years into one post because truth is with Widow's fog, I cannot remember the majority without the memory reminders on FB. Sad but true. I tried managing both kids and their own unique needs while trying to balance a full time job at the office and honestly the stress became too much. So in September I put in my notice and in October I left the medical field. It was by far the best decision I have made for our family. Albeit one of the hardest decisions, I have ever made. Montana said one day "Mom, you are actually smiling". It was so AMAZING to be at home with them over Christmas Break or when school closes without notice I don't have to stress about how to balance work and having them home. Kuddos to those that do this every day! 

Now life is full of appointments, ballgame practices, ballgames, band, travel, cleaning, and enjoying life the best we can. There is still a huge void with Travis not being with us. It's been hard on the kids and me. There are times at the end of the day I just want to have him here to talk to, bounce ideas off, or just sometimes for him to watch the kids so I can go take a shower without worrying about them arguing and fighting. I won't lie there are days I am so exhausted from Dacotah not sleeping that I feel like a walking zombie.  

Nine Months: Finding Our New Path, our New Journey Forward

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.

When the unexpected happens: Remembering Travis aka Daddy

As many of you know Travis and I had been separated for the better part of 2018. However when he nearly died from DKA, we decided to see what the future had in store. We had the best 12 weeks of our marriage from Jan-March 2019. The new medicine I was on helped me be the loving and patient wife and mom that I wanted to be. It helped with the focus and helped us grow closer. In February during Dacotah's seizures we realized just how much we needed each other and everything was perfect. We never argued or fought. Travis was so excited about getting healthy so we could travel this summer. It was 100% without a doubt the best time of our lives together.

The weekend of our 6th anniversary we went to Mebane to visit Wes and his family along with mamaw Jean. For the first time ever everyone was happy, laughing, and enjoying wonderful time together. We had no idea what laid just ahead. For our anniversary Travis and I had take out and he got me a new jacket, I got him a new belt and wallet case. We got home late that Sunday evening.

Three short days later I was at karate, Travis went to play basketball with his guys over in East Stone Gap, it was the one day a week that we got a sitter so we could do our own things with our friends. I was in a weak signal area, and when I looked at my phone I had 18 missed calls everyone between the fire chief to his work had called. I didnt' recognize any numbers other than the fire chief's and just thought someone had mistakenly left the office door again. My heart told me something worse. I called his friend Jarrett back to find out that my husband had died on the basketball court. WHAT??? He was fine earlier, I had left him playing at home with the kids, how???

My karate instructor drove me to the hospital, my boss met us in the lobby, and as the nurse came up to tell me she was sorry, I bluntly said Don't touch me, don't hug me I have Asperger's just let me see him. My heart ached for the one my soul longed for, till death do us part does not prepare us to say goodbye.

Telling his mom was hard, I cannot imagine what she had to be feeling but I felt so helpless not being able to hug her, I knew from a wife's point of view it was a hard thing I had to face and tell his family. The absolute hardest was walking into our home and telling our children that daddy wasn't coming home again. Our oldest just hugged me and sobbed. Our son, looked at me when we went to get his car from the gym "where's daddy", Do you see the moon? "Yes", Daddy lives up there in Heaven now. "How did he get up there", well son, God gave your daddy angel wings. "You mean my daddy is a real live super hero". Yes son, he is watching over us forever.

Next was figuring out how to plan a funeral, I had planned my mom's, helped with my aunt's, but this was different this was my husband. Even now as I write this nearly two months later I am shaking from the anxiety of losing him. So I sat down and wrote him an obituary one that told his story ...*It has been edited to maintain privacy of our family*

Well since you are reading this it must mean that I have gained my super hero powers, least that's what my surviving son, told his mom, and his sister. It was a typical Wednesday night March 20, 2019, I was playing basketball (2nd only to golf) with the guys at the local gym, when I was pulled from the ballgame by the Angel of Death and met my Creator. He met me at the gate and beside Him my loving dad was waiting to show me around these streets of gold. You have no idea how awesome this place is, but they need to change the colors to DUKE Blue and UT Orange. Okay, they said I have to get serious so here goes. I left this world for my promised eternal life March 20, 2019. I leave behind my loving wife, my daughter, and my son . My mother. My brother and his wife along with my two favorite nephews. I leave behind a lot of wonderful family, friends, and my golf clubs. My friend better use them wisely. 

Blessings to all, see you on the other side! - "Pickell"

His graveside service was special in that he wanted bag pipes with Amazing Grace played, the kids wanted sparklers to celebrate their daddy, so that's what we had done, we had a celebration of his life. The kids and I, along with our extended family thank everyone for reaching out to us and for being there during the most difficult time of our lives. 

Seizure Activity -Repost from my Facebook post Feb 2019

So the good and bad update: We are home!!! That's the good news that I am very thankful for.

PLEASE do not comment to tell me that person x or person b has epilepsy and they are fine. I know all too well what seizures are after experiencing them personally for several years from age 13-24. It was scary enough to personally experience, but to see our child suffer through 3 in a row one lasting over 45 minutes is not something I EVER want to witness again.

So now that disclaimer is out of the way. Bad news: Dacotah's EEG per the neurologist report "his EEG this morning demonstrated a prominent focus of spike activity from the right temporal region. There is slowing in this region as well". Dacotah does in fact now have a diagnosis of epilepsy (specifically focal seizures). No worries as much as the anti-seizure meds should be able to control them. The SLOWING in the right region is our main concern at this time. This can be due to his genetic chromosome deletions, but it can also be that something "structurally is wrong with his right temporal lobe"; the only way to know for sure is to sedate him for an MRI. Which I will follow-up with his PCP to get that scheduled.

*Sidetrack for a funny comment* Dacotah had thrown such a HUGE fit yesterday while we attempted the first EEG, that when the staff asked about just doing the MRI today as well, the Neurologist laughed and said "sedated, else the tech would be watching his feet disappear as he climbs out of the other end of the machine" (sounds about right lol)

Travis and I want to thank everyone for your prayers, your comments, and your well wishes. This weekend has been very trying and hard, but we are thankful that Dacotah is stable and is back to his normal self. I will update again once we know when his MRI is. No matter where life leads it takes a village to work together to get the job done. Love you all. *hugs*

UPDATE MAY 2019 Dacotah did not have a structural issue per his MRI. We Discontinued his seizure medication after he kept throwing up from the two that we attempted. Instead we turned to Osteopathy and so far we have had excellent results. We will continue following up with neurology in the future. 

Sometimes There Are No Words

Last week I had one of the most gut wrenching days I have ever had as a mom of a special needs son. It was the look on a teachers face when I asked for a bathroom to assist my soon to be five year old in so he could finish pooping in the toilet vs his underwear. Yes, I get it all the time, he looks normal. I had to explain "He is one of your special needs kids" before she suggested and unmarked bathroom at the end of the hall. With all my heart, I wish he was potty trained, but truth is he isn't. We've been trying, we are making progress, slowly but surely he will get there, just not that day.

So as I stood there in the hallway, waiting on an unmarked bathroom, I had raw tears streaming down my face. For sooooooo long, I have mentally fought, "maybe" just "maybe" they are right and he is perfectly fine. Reality slapped me hard, as I handed my son over to his amazing pre-k teacher and asked if she could have the special needs teacher finish cleaning him up. All the while his classmates looked at him screaming "one more hug mommy, one more hug pwease". 

I cried most of the day at work finally the realization that the genes don't lie, that our son will always need a little extra help, it hit home.

We got his CMA report back in December. Last week Dr. Sprouse sent her full report. I took a while to process the new information and that may be why it slapped me harder. It's the realization that no matter what we do, he will always have chromosomal differences that cannot be medically fixed. Per Dr. Sprouse's report:  Dacotah has been diagnosed with Autism Spectrum Disorder, Klinefelter's Syndrome (giving him an extra X chromosome) and two Copy Number Variations of 5q14.3 deletion and a 7q31.32 deletion.

It became more obvious that he was further behind because we have a private FB group for kids with XXY and he was significantly still behind 95% of those boys. The Chromosomal Micro Array gave us the deletions, but it can't tell us how to treat or fix it. I can just say I am very thankful that given what they could have caused, they aren't life threatening at this point.

From his report: At his chronological age, Dacotah is at risk for language based learning disabilities, executive dysfunction, dyslexia (which we are seeing more and more), graphomotor dysfunction, and adhd. He is more reactive than his same aged peers in auditory, visual, touch, movement, and body position. He is more reactive than peers in conduct and social emotional. Dacotah is still a year behind in expressive language. At the time of his test he was 4 years 8 months, and he scored at a 3 year 7 month old level aka 10th percentile. Processing speed was 8th percentile.

I have yet to pick him up from school and him tell me what they did at school that day, who he played with, what therapist saw him that day. I asked him EVERY DAY.... Silence. One day when I pick him up, he will surprise me and tell me about his entire day... I am waiting.

So why share any of this? Because for me it is therapy, it allows me to not carry the burden alone. I don't expect anyone to understand. No two kids are alike, no two disabilities are the same. Some kids on the spectrum talk like professors, some never talk at all. Some sleep great, others can take medicine and never sleep. I don't want to change my son, but I want to give him EVERYTHING I can so he can have the tools he needs to succeed in life. I want to make it easier for him without my oldest hating me because she never had a mom because I was too focused on her brother. I want to learn how to balance and move forward. I just want people to be honest and be open and be alright with listening when the times aren't always peachy. There are hard days but step by step he will get there.