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.

The weekend adventure to Maryland

After trick or treating, we head back to the house and finish packing (I do, while he watches his bot). We got a much later start than I had planned, but that's life in our family. We made a pit stop overnight and headed out this next morning around 8am (the drive to Dr. Sprouses office was 4 hours and 15 minutes away) his appointment was scheduled for 1pm. I am praying Please let us make it on time without kicking, screaming and hitting. He didn't, not a single time. Instead he asked every 30-45 min "mommy where we going". I told him we were going to see Dr. Sprouse. "I no like doctors...hmph" so the next time he asked I told him I was going to see my friend (which wasn't a lie) "me go see your friend too mommy, me go, me go" We arrived to Dr. Sprouse's office at 12:50pm and by the time I got him to agree to leave his firetruck in the van and get inside her office it was 12:55pm, early for a change!

Let me first say how AMAZING Dr. Sprouse is with our kids. Those parents with chromosomal abnormalities. The first day we started testing at 1pm. While in the room Dacotah would stub up and not want to do what was asked, and she would very directly tell him "okay whenever you are ready we will keep going", when he needs a break, she'll let him run up and down the hallways, she'll let him have hugs from mommy and he gets back on tract. At 3pm he had had enough so we left to go visit mommy's friend Victoria for the night.

I first met Victoria through couchsurfing, she is an RN who comes down from Severn MD to work the local RAM clinic each year. We connected great during her last visit in and we stayed up talking way tooo late lol. Dacotah was screaming he wanted ice cream, and the container I had brought with us melted, despite my best attempt of keeping it frozen, so we took off to the store to find his dairy free ice cream. Victoria and I had dinner, a very good, better than you could buy out of the restaurant kind of dinner. Salmon belly, with broccolini, and fermented veggies. I am not lying when I say it's delicious.

A few weeks back I bought Dacotah a lightening McQueen camping cot there were two reasons, one was to get him to sleep in his own bed, one was to get him out of my bedroom altogether at night. It is lightweight and portable and has just enough give that it gives him a secure hugging feeling. He went to sleep beside my bed that night and slept, he would startle awake and I'd put a reassuring hand on him and he would go back to sleep. At 5am he was up and ready to be in my bed, but we had made it 8 hours with him in his bed first!!!

We got up again around 730, and I asked him if he wanted to head back after the appointment or if he wanted to stay there again Friday night. he said "me go home". So I packed our stuff  back out to the van, and we headed back to Dr. Sprouse's office. We test another two hours around this time it's 11am and Dacotah is done having anything to do with anyone, so they suggest we go for a walk and come back in 15 minutes. So Dacotah and I walk around the entire building, running, jumping, climbing steps, and head back in. We finish all the testing around 1pm and by this point he is saying me go bye bye every few minutes. So we move over to the big room with the toys so Dr. Sprouse and I can talk.

Dacotah is doing great cognitively. The anxiety, sensory issues, and his speech are a huge concern at this point. She gives him an autism diagnosis so we can continue getting his services and find out what else is going on. At this point we aren't sure which problem is primary vs comorbid vs a standalone. We are going to do a Chromosonal Microarray Analysis Test. We attempted it last year but didn't get enough spit on the swab so the DNA strand cracked during the test :( She also suggested we go see an ENT to check for a cleft palate, I can't see a hole with my eyes, but they can see if there's a pin hole that's causing his speech to still be so far behind. I'll get that set up soon. I'm not 100% sure if they can do that with him awake or if we need to find someone at Niswongers to check and correct it under sedation if he has it. Dr. Sprouse will get in touch with his therapist and formulate a game plan to help with the speech. At this point we aren't as worried with the PT and OT they are secondary concerns.
We discussed his sleep issues and I told her we were training Loki to be his service dog. She backed that up 150% saying that was a great idea. She said "why don't you start letting Loki sleep with you both at night, then as you move Dacotah into his room, he still has Loki there for his support at night. (this works great because Loki can always be right there even when traveling). So we are going to start working on that this week.
We discussed how Travis and I separating didn't seem to have an impact on him because he still sees us both every day and there's not fighting or arguing between us. (I'll add this to a different post with more detail tomorrow). So we'll get Loki use to both places and proceed forward.
We are going to put potty training on the back burner in the meantime and work solely on getting him out of my room first. I'm hoping we get approved for a grant so I can set up a security system that will alert me if he opens the door to his room without some BLARING loud alarm scaring us both to death in the middle of the night. :)
We go back to see Dr. Sprouse again in July 2019 and we will continue to see her yearly and make changes as needed after each visit. This lady gives me encouragement, hope, and helps me know that yes it is a long road, but I am not alone. Thanks Dr. Sprouse, thanks NDC for your research and support to help our kids.

The drive home hmmm. I had planned on making it half way. Dacotah wanted McDonalds, and well guess what out of all the McDonald's this one had an indoor playground.... lol fast forward 45 minutes and we were on the road. By the mapquest calculations we would bypass rush hour. Stupid me forgot that I didn't just need to worry about DC traffic, but Richmond, and school letting out. LOL we made it to Staunton VA and between it being dark, raining, traffic going less than 50 in a 70mph zone, I was done. We found a hotel off of 81 and crashed for the night.

Dacotah did such a great job with 3 days of traveling 4+ hours each day and yesterday was no different. He would just say "it's late me go mommy's house". We made it back to Abingdon and we went on down to get him a hamster and all the fittings for his new home. Dacotah was so excited (he'd been watching Ryan's Toy Review and hamsters on youtube for weeks now and would ask "me get one") So his dad and I agreed we would split the cost and he could take him back and forth with him along with Loki. We made it home around 3pm yesterday. I feel like a weight has been lifted off and I'm not searching for answers. I know. I'm not wondering when this journey will end, because it won't. But it will get easier.

The good, the bad, and the normal

I wish every post could be uplifting and optimistic, but I'd be lying if I didn't say there are some days I want to throw my hands up and say I'm done, someone else needs to take over. Then there comes along a rewarding breakthrough day that gets me over the feeling sorry for myself that makes me excited to see what Dacotah does in the future. So with that being said:

School, Dacotah is doing great. He still has a lot of separation anxiety when we drop him off in the mornings, but greets us with the worlds biggest smile at pickup time, followed by "when is sissy coming home". He doesn't tell me about his day, but his therapist reach out and let me know what they are working on so we can keep working with him on the weekends and when school is out. As a mom with my focus being on him when I see his facebook pictures at school, I notice the small things, that he is sitting just outside of the group, that he is listening to the teacher, or that he never looks at the camera when they try to take his picture. These are little things. The big thing is he is learning. He gets very frustrated when he can't get the words out.

Halloween: Dacotah wanted to be batman, so we got him a $15 costume from Walmart that had a face mask, well as you can imagine the face mask last 2 seconds. Literally long enough to snap a quick photo! Big sister was a kitty cat and was super excited because this year she would get to meet up with a friend instead of only going to a few houses. We went to our regular places and by the 4th stop of the night, Dacotah says "it's late me go mommy's house". I told him we needed to make one more stop to the trunk or treat at our home church. (I still call it our home church even though we have barely gone since he was born, the constant worry of his allergies and him melting down, prevents me from feeling okay with "dumping" him off on the nursery worker.) So we get there and are greeted awesome with always "How are you all and how's Dacotah". Dacotah shys away but does wave hi, Montana runs off to visit her friends from her old school. As we are standing there Dacotah notices Mr. Rocky and the popcorn machine. He says "me watch that". So Rocky loads up the popcorn machine and Dacotah stands mesmerized by it for the next 30 minutes. He rarely looks up and it's just long enough to make sure that I'm watching it too. Linda says "My he sure is growing, and with tears in my eyes and my heart breaking "yeah he sure is, but it's heartbreaking that my soon to be 5 year old would rather be watching this vs trick-or-treating"". Everyone tells me he will get there and he is making progress for sure. After he has his fill of watching the machine, he says he is ready to go bye bye and takes off toward the van.
We continue to meetup with Montana's friend B and her family. Make a quick pitstop by my friends house to see them dressed up like mustard and ketchup. Dacotah sees the fire hall is open, so we stop by to see our local firemen and their big trucks. They see Dacotah and tell me to take him in to look at the trucks, and for the next half hour, Dacotah smiles ear to ear, racing from one truck to the other, back to another, ringing the bells and having a blast. Thanks Big Stone Fire Department he had a blast!
So we leave from there to grab some food so I can get us ready for our trip to go see Dr. Sprouse in Maryland. It's just Dacotah and me this time. His dad is in training in Roanoke for his new job. To say I am dreading this drive alone, would be an understatement.

The Newest Danger

Everyone sees Dacotah and most of the time they see him on his good days. The days where he is smiling and laughing. At school we are noticing he is following directions and taking pride in doing his letters and drawing. We manage to get his homework done and he sits and listens to the book and attempts to draw whatever is on his mind at that point. (not necessarily what the assignment is but he attempts it, which is good enough).

What they don't see is when something takes a second longer than it should, the little thing that sets him off. The dvd jamming and skipping because it has been smudged with finger prints, the cat coming too close, or just an overload of too much in one day.

Thursday afternoon Montana and him were watching Bob the Builder for the 100th time this week. The DVD froze and from the living room I hear the LOUDEST bang against the wall... 5 seconds later the most blood curling scream came from Dacotah's room. He was a ball of tears in the moment it took me to run in there. When I asked what happened he just screamed that much louder, finally his sister said "He got mad because the tv froze and I couldn't fix it fast enough so he SLAMMED his head backwards into the wall". There are not enough words to explain how hard he had hit the wall had a stud not been where the impact was, there would be a hole there.

Yesterday morning he was outside barefoot in our driveway and somehow managed to cut the end of his big toe, the blood caused a major freakout, where he started "crying my toe bleeding, ow, ow, ow, over and over." This was not a over and done with a smile, bandaid and kiss. This went over for over 15 minutes.

Soooo while yes, socially he is doing amazing at school and going out to the grocery store (despite trying to run off every 5 seconds, or play hide and seek), his self-harming behavior have increased significantly at home and in the vehicle.

Now here is where the next step in his therapy takes place. We have started the process to switch him over from BTS (Behavior Treatment Services) to TDT (Therapeutic Day Therapy) which he will have daily at the school. We are also looking to set him up for Intensive In-Home Therapy to help with the self harming and throwing things, so that we all stay safe. While he is only 4.5 he is strong, when the meltdowns hit he becomes even stronger. It is our hope that we can find ways to help him cope with not hitting himself when he gets upset. We got rid of the biting, but the hitting took it's place.

Once the therapies are in place we'll update with how they are going. Sleep is another issue for the past month he yells out in his sleep (he has conversations in his sleep that we had during the day.) and he wakes up from 1-330am every nihgt. They can't up his prescription medicine because his blood pressure runs low (takes that after his mom) so we are back up to 5mg of Melatonin in addition to the Clonodine, but for the past 2 nights, he's slept through.

On a Roll in Pre-K

Wait.... what that's not my kid! Oh yes! So let's start on the 1st day. He was not thrilled about going in the opposite direction (for the past 2 years he had been at KCA, the public school is the other way). No me no go to big school me small boy. HEY first off that was an AMAZING sentence. Remember last year at this time he said 1-2 words at a time. EEEK

So in we go. Let me start off by saying that Ms. Pam, Ms Debbie, and his teacher Ms. Peak were ABSOLUTELY amazing. I have had my battles with the school, but that first day changed me on so many levels. I was leaving my kid with his village and trusting them with my precious child. Dacotah was super clingy and when Ms. Debbie took him from me, you could hear his blood curling scream throughout the cafeteria. Did my heart break. Yep into a million pieces. I won't lie I was so scared. I snuck around the corner so he couldn't see me, and Ms. Debbie was patting him to try to calm him down. By the time they got to the hallway he was holding her hand and off they went.

THAT MOMENT when Ms. Debbie took him from me, melted my heart in a way that only a mom could understand. But it was as though Dacotah was hers and she was there to help him. She stayed with him all day Wed, all day Thursday and even part of the day on Friday. She didn't have to but she made sure he was going to be okay. In fact, his ENTIRE team Ms. Pam, Ms. Phyllis, Ms. Mandy, Ms Pat, Ms. Debbie and Mrs. Peak and Ms. Nikki all made his transition one to remember. There are not enough words!!! Really there isn't.

Throughout the day I saw pictures and saw him being in the classroom and participating. I saw a side of him that we had been working towards since May with ABA and it's made a huge difference.

When he was picked up from school he said yes when we asked if he had a good day. Did he like Ms. Peak...yes. Did he have friends.... me have lots of friends...big school. Again we could not have asked for a better transition.

Last week was his first full week and I keep hearing all of the positives and how well he is doing. To say he is exceeding expectations would be an understatement. He has done amazing. I tell him before dropping him off in the cafeteria that I have 5 minutes with him and then I have to go to work. It WORKED wonders. I can sit him down at the table to play and tell him I'm going to work and he tells me bye with no tears!

Update on Loki

I have to take a moment to update on Loki's training. 

Next week he will finish his basic commands and at this point he has learned

Sit

Down

Wait

Under

Place

Leave it

he still has his fun commands like touch, shake, etc but those aren't service related.

Sept-October he will learn his Advance commands

Nov-April we will meet with the trainer EVERY week to start task training and his ADA training out in public. His task will be a "Forced Fetch" Where Dacotah will have a leather tassel of sorts attached to him and/or his clothes that if he runs in a dangerous situation, Loki will grab and hold. He is also being trained that during Dacotah's meltdowns he will "distract" him so Dacotah turns his attention to the dog and gets re-centered. 

As many of you know we decided to train Loki ourselves to keep the cost low but more importantly so Dacotah would bond with him. Today Loki is close to 80 pounds and Dacotah plays ball outside with him, and wants to help walk him when we are on neighborhood walks. The bond is growing and we are excited to see how calm Loki is and how fast he is willing to help us with Dacotah's needs. 

Tonight I took Loki to Food City and to Walmart. He does wonderful ignoring other people, doesn't bark, doesn't do anything but walk beside us. I LOVE IT. 

Speaking of cost we are about $2500 short of our goal to cover his full training. We plan on having a few more fundraisers over the next 2-3 months, but if you or someone you know would like to make a donation, please get in touch with us. I will be taking up another PAWS4DACOTAH order for shirts, so if your work or church would like to order them, please know it's for a great cause. 

The difference a year makes.

Can you say a hundred words??? I remember distinctly being told Dacotah has autism and will be lucky to every say 50 words, he will be very lucky. This time last year Dacotah had around 30 words but would not use them to talk to us unless we pushed and pushed. The persistence paid off and today he has a vocabulary of a 3 year old!!! WE WILL TAKE IT. His daycare teachers have commented over the past few months how well he has been doing with saying what he is needing and wanting. This is something we never thought he would be able to do, but I prayed for him daily that I would just know what he needed, if he hurt, and how to comfort him when he couldn't sleep at night.

We made a few difficult decisions and decided to give him Clonidine to sleep at night and since then he has been able to be more alert during the day. He is more aware of what is going on around him and at times will engage "friends" however brief he still interacts with his peers to some degree. There are still more times than not that he simply wants to be alone and goes off in an adjoining room or parallel plays with the group. It's been a year in the making, but we will take it.

We had him tested for Pre-K at the local public school and he was accepted. This is sooooo bittersweet on sooo many levels. I have had a kid at KCA for the past 8 years. Last Friday we had to say goodbye to a wonderful preschool and Ms. Monica, Ms. Tracy, and Ms. Telsi. Dacotah loved them but at the end of the day he was super happy to see his mommy. I was always happy to hear how his day went and getting to see snippets of his days. They were wonderful in allowing his therapists to come to the school and providing a room where they could work one-on-one. I am forever thankful for them.

Sooooo what's all the fuss about? Pre-K.... our big boy will go to Union starting next Wednesday. I am full of fear, dread, and at the same time optimistic. I am waiting for the office to tell me I have to come pick him up because it's too loud in cafeteria and he's fled, or the gym doors were unsecured and he managed to disappear.... AHHHHHH THESE Fears are sooooo very real. Been there done that. Soooo Next Wednesday is going to be an adventure.

We do have some safety measures in place. God heard my prayer when I asked that his teacher have an idea about kids with autism. Mrs. Peak has ABA training she also has nursing so she knows about food allergies. THANK YOU THANK YOU THANK YOU. She has an aide in her room and if that is not enough I am prepared to ask for a one-on-one aide especially during those times when it's too loud and he gets overwhelmed. But I'm praying he goes in the first day and does wonderful and my fears are put to rest and he proves his momma wrong.

As far as the run risk, that is still very much a problem. Several times when talking to his preschool teachers he would get out of the daycare and be outside of the fence at the van in the parking lot. The daycare door is HEAVY. I say that because it is very heavy and nothing compared to the doors at the school. Tammy his ABA therapist said I really needed to consider a tracking device just in case.

I put it off for a week but the more I thought about it, the more my mommy gut took over and I reached out to the Sheriff's department. They have a program called PROJECT LIFESAVER where they place an ankle monitor on Dacotah. This monitor will provide a pinging signal with a two mile radius on the ground, so they can drive around and find him with it, or after 30 minutes with no luck on the ground they will call out of state police with a helicopter that can ping the signal 10 miles away!!! Let me just say Lt. Meade talked to me on the phone for 45 minutes getting to know about our family and our son and made us feel like we were one of them. Included. Something that we don't feel a lot. She will personally come this Friday to our home to meet Dacotah and to place his lifesaving device on him. From there the school resource officers can change his battery as needed. With his device if we go out of state the local law enforcement can also pick up the signal if he gets lost!!! Even in Canada!!!

So I'll update next week on how he is handling everything.

ABA Journey Continues and update on Loki

We are in the process of having a VBMAPP assessment completed by Ms. Tammy to find out what Dacotah's barriers are. This assessment will give us a much needed insight on how we can connect better to accomplish daily living needs like going to the potty, and asking for things with demanding it be done right that second. After the first day we have been advised to get a referral back to UVA in Charlottesville with their autism team so we can get everything into place for the school system to accept his diagnosis.

Yep we are still bashing heads with the county school. They refused his Autism diagnosis because the developmental specialist in an NP and not a doctor. Grrr I won't go on that limb right now. Though Ms. Tammy does plan on taking to the ABA therapist who works with the school to see if we can get on the same page before he starts PreK next month. Ohhhh wow mommy just had the realization that he starts school in a month.... WHAT???? And big sister starts middle school in 3 weeks. Wow

Loki's training is coming along nicely. Dacotah is able to walk him and tell him to sit on command. Their bond is growing daily. I still get nervous taking the dog out to the grocery store, but he is amazing and well mannered. The only time we had an issue is I had a shakey buggy once and Loki kept trying go run away from it. Since we have his vest people don't come up crowding us or trying to pet and love on him which is especially helpful when we are trying to get in and out of places. Eventually he will be tethered to Dacotah and/or Dacotah will have a strap attached to him so Loki can grab and hold to keep Dacotah from darting off. I wish there were enough words to explain how fast this kid is, yes he is 4, but his 10 year old sister cannot beat him in a footrace. It will be a blessing. Maybe once Loki gets out of the chewing phase we can get Dacotah into his own bed and have Loki alert us if he gets up. That'll be on down the road but would be ideal.

The longest days

There are days in our home that seem like they will never end. The screaming, crying, meltdown fits. The never ending diaper changes. The fight over what food needs to be eaten. There are days that are long and push me to the realms of the mommy limit.

One afternoon this past week he came home from daycare and demanded his vegan ice cream. I simply stated "no you need sausages or sticks first" the next 15 minutes was slapping, picking, punching, slamming doors all while screaming over and over "I WANT ICE CREAM...I WANT ICE CREAM...." finally after what seemed like ages there was the smallest flicker and he came crawling up into my lap to be calmed down. "Me want sticks". (Sticks are slim jims) he got them and ate them and asked again for ice cream which at that point he got.

The diaper changes are soooo annoying. Is that too harsh? It would be different but if you ask him where pee and poop go he always replies "in duh potty". Great! Fantastic! Let's go to the potty. Brings on instantaneous stimming with his hands and him screaming "ME NO POTTY".

We didn't go see the Klinefelters specialist in May. At this point the autism is our main focus and trying to get his aba on a regular schedule has been a challenge in itself. We had an amazing lady Ms. Tammy who was an interim until they found a replacement. Since then we went through 2 more who simply cancelled constantly or just followed Dacotah around every visit. Last week I was ready to call it quits but went to the regional director and asked to be put on Ms. Tammy's wait list because she took the time to work with us instead of telling me I was doing everything right. "Obviously not!". So starting next week we have Ms. Tammy back and our first goal is finding out where his listening concept is presently so we know how to approach him on his level.

Dacotah also got accepted into the local pre-k at the local school. Honestly I was a nervous wreck. But his teacher Ms. Peak has already reached out and has been an answered prayer. She has ABA training under her belt along with having 2 years of nursing. (That part puts my mind at ease regarding lunchtime).

I am hopeful by his next IEP meeting we have more information that will continue giving him a great start.

Yesterday he was singing Jesus Loves Me without being prompted and it let me know he is going to be just fine. This child was never suppose to say more than 50 words. Just last year he barely said more than 1-2 words at a time. Now he will repeat himself 1000x until you let him know you heard him. But he has never given up. So even on the long days, the hard days, the neverending fighting days we will keep moving a step forward. Eventually we will get there.

Come into my world and watch

I had a conversation today with a close friend. "You know I can see that Dacotah wants us to join into his world and he wants us to play with him. But every time I touch his cars or his sister moves something so she can play with him, he becomes very visibly upset."

We talked about it for a few minutes and it made sense, sad sense, but it made sense. Dacotah wants things a certain way. Think of OCD and then 10 fold it. He allows us in just enough to control us and if we move or do something he is not expecting it sets him off. There are times he will allow us to play police man and the bad guy, its for mere seconds before he takes over both cars and then gets upset when we "aren't playing" with him. A split second later he's absorbed into his own high speed chase.

His ABA therapist came over on Tuesday afternoon. It's the one day a week that we can sit outside and watch him play in the comfort of his own front yard. This week I really wanted to try to pin down exactly what parts of his character autism controls, what part the KS controls, and what part is a normal 4 year old. Her reply came as no surprise as she said the autism controls most of his daily life. So after having the "WHY DOES LIFE HAVE TO BE SO HARD" mommy moment for a second my next question was "how do we get him the help he needs to adapt to his environment instead of making the environment adapt to him". So over the next week she is going to go back to her employer to see what further services he may be able to get. Once I have more detail and a game plan we will share it. In the meantime I want to ask for prayers that God leads us in making the best decision regarding his therapy and his schooling in the upcoming months.

In May we are going to make the 10 hour trip back to see Dr. Sprouse in Maryland for his annual visit. Her expertise has helped tremendously already and I'm hopeful she can spread some more light on her most recent publication and how it can benefit Dacotah in the long term.  Then we will spend a day exploring the insect museum and the Library of Congress with Montana since she will miss her last 2 days of primary school. Hard to believe she is going to be a middle schooler next year! I'm getting old....er.

His speech has expanded 10 fold since Mrs. Goodman took over. There is still A LOT we can't understand but he sings songs that we can figure out. Jingle Bells in April anyone? Batman? Where is thumbkin but it's a random variation? Eeek I am excited because remember this is the little boy they told me would say at max 50 words. 50 ya'll. Some of my sentences are longer than 50 words lol. But he has surpassed it and continues to amaze us.

Daddy taught him to reply "love you too" when we say "I love you". He has spontaneously said "love you" but it's SUPER RARE but has happened. Those are the tiny milestones that we will always treasure and adore.

A Welcoming Team

We decided to sign Dacotah up for the local special needs ball team.  It's about a 30 minute drive and the games are generally played every Sunday.

Let me just say we were welcomed with open arms!!! There were no looks of why, who, or how. We all understood. We are live that kind of life. For the first time in 4 years we found a "fit". The manager of our ball team and Dacotah hit it off from the start. He hates people touching him bit instead held her hand or her shirt as she walked them around the field after being introduced.

Today I have a photo of our son walking with his head held high and with confidence something I long feared would never be seen. He did AMAZING. So glad we decided social was best.

The Journey to ABA

Dacotah's biting has gotten so severe that he is breaking the skin on his hand, his hand is sore to the touch at least two days a week from the biting. So his amazing OT set about getting him some gloves to cover his hands. *insert what were were thinking here*. The gloves came in three weeks later than expected and they are bulky. Dacotah hates them and is able to easily yank them off and throw them. When we went to pick them up and to make sure they fit the meltdown Dacotah had was something out of the movies. He screamed, he yelled, he bit, he cried, and flung us both backwards when I loosened my grip for a split second. Needless to say we left with the gloves in his diaper bag and not on his hands. We have worked trying to get them on but to no avail. So now he is biting not only his hands but his wrists and arms and us when he gets in a fit :(

Following the last meeting with the school, I contacted our local ABA provider and we set up and outpatient appointment. We took him in and less than 30 minutes they asked for Clay to come assess Dacotah while we were there. Dacotah made eye contact (I indeed rolled my eyes) but this time was different. He saw what I was talking about and asked more questions about what happens at home vs when we go out into public. He listened. Let me tell you how much that means to me. HE LISTENED to us. He didn't write us off as being over dramatic, he didn't ignore what we explained, and agreed with the autism diagnosis. He agreed too that Dacotah was mild to moderate and that he was autistic.

So what was next. Getting approved for ABA therapy I thought would be a nightmare, but less than a week later Dacotah was approved. We also fond out we could get his pullups covered under his insurance and have them mailed to our home.

We met his temporary ABA therapist last week Ms. Tammy (its suppose to be temp until the new lady gets processed in, but if I have any say we are keeping this one). If there was ever an angel on earth... She came the first time and arrived about 5 minutes before D got home from preschool. He came in started demanding she come play with him and had her follow him room to room. She saw the simple sweet side of Dacotah, the one the school therapists see as we make sure his therapies are first thing in the mornings. Tammy met him right after naptime. Perfect but he wasn't able to hide his autism, his speech delay, the only thing he can hide is the Klinefelter's.  If we had never told anyone you would never know. But here was a lady who had just met us for the first time who has had years of experience working with kids with autism and she was amazed with what a battle we have had. Basically it boils down to "He has some speech". We reviewed his school reports and for the cutoff for the autism program they have to be 72 or under. Dacotah scored 74 despite having social issues and lack of speech at age 2.5 but I regress. This mom is finalizing her battle plan and it won't be easy and laid back.

I am planning a post that is real brutal and honest shortly but I'll continue this with ABA.  Today is Tuesday. Today was Dacotah's and Tammy' s second visit. Man on man was this kid different. She saw the meltdowns, she heard the screaming before she ever entered the house, she saw the frustration on our faces trying to cater to his needs while keeping him safe. Dacotah does not get to enjoy his bot as often at home and it's serious at times. He threw his stuff over, he wanted in the den, he wanted outside, he wanted the dog, but didn't want the dog near him, he wanted cake, but not that cake... real raw autism. The biting the fighting not wanting to wear his gloves. The list could go on, but SOMEONE outside our home SEES him. We have ABA approved for 10 hours a week, for how long I haven't asked. Honestly I'm too scared because I am soooo hopeful this will be the key.

Tomorrow we have a field trip. I took the day off, yep. But it takes both parents for any outgoing trips 95% of the time. It can go great but it can be a nightmare straight from Elm Street. Sadly its usually the latter unless he is going to see his papaw, they have a super close bond that I am soooo thankful for.

Jan, Feb, and March

So after slacking for nearly seven months I hope to update this more often at least once a month so we can continue tracking Dacotah's progress. A lot has happened in the first quarter. January the daycare was closed a lot. Thankfully daddy had quit his job back in October so he could stay home and take Dacotah to therapy and be home with the kids when school is out. As you can imagine it creates a harsh financial strain and sadly nothing gets paid on time but we manage the best we can.

As I have mentioned over the past two years we knew Dacotah was different. We knew his genetics were different. We chose to tell people that he has Klinefelter's Syndrome (several families we know have left it up to the child to tell when they are older, but we felt this was the best decision for our family and it helps raise awareness). After research and studying the prevalence of pyschosis, ADHD, and Autism is significantly higher in boys with Klinefelter's 27% have 1 if not all 3 in addition to KS. We took Dacotah back to see Dr. Hajanpour and he was FANTASTIC in watching and listening he agreed at our last visit that Dacotah was autistic and sent us back to our primary care to get another referral back to Kristi Cook, NP. At this point I created a backup of video to show what our home life is like because there are times it really feels like it falls on deaf ears because people just don't see it. We took him back to his PCP and he also stated that Dacotah has autism and agreed 100% to send him back to Kristi Cook. At 3 years 362 days Kristi Cook diagnosed him with Autism Spectrum Disorder. The downside "our local school system refuses the diagnoses because it's not from a center". Which leads to a whole other issue:

Mainstream school for kids like Dacotah who are listed as special needs is a fight straight out of h*ll. The administrators want to make sure that every kid possible takes the SOLs. I cannot fathom our son trying to take an SOL or the stress that it would induce to satisfy the state numbers. I asked for a meeting with the school psychologist and behavior therapist. I showed them the EXACT same videos I had shown the genetics, the pcp, and the behavior specialist just to be told it was anxiety. "your son is showing anxiety (TRUST me when I say I know the difference in anxiety and that's not what Dacotah has. His sister had a horrible case of anxiety secondary to bullying that has since resolved) and not autism, we won't accept the diagnosis from Cook because she is an NP not a MD, and because she didn't do the ADOS-2. Despite him failing the Vanderbilt Stat and the M-Chart-R". Second, even if we were to change him to having ASD the services would be the same". REALLY I wanted to jump out of my skin and I left the meeting feeling discouraged, unheard, and felt in honest that I had failed our son. The ONLY benefit was the behavior therapist suggested we look into ABA therapy.  (I'll continue this in a separate blog)

I'm going to take a slight detour before I continue on because we have to talk about Dacotah's birthday. Since January he wanted to have a wee-ooo-weee-ooo birthday. EVERY single day we heard wee-ooo birthday me birthday. His Mamaw, Papaw, Daddy J (my dad), Aunt Ashley, Cousin Caleb, Montana, his dad and I shared this special day with a dairy free chocolate cake thanks to my friend Willie.

I contacted our local fire chief Billy Chandler and asked if we could possibly come see the firetrucks and station for his birthday. Let me just say our local fire department is the bomb! They went above and beyond and allowed us to use their classroom for his birthday party!!!!!!!!!!! The chief had to be out of town unfortuantely but his LT. and 2 other fireman were there, they made us feel welcomed and didn't attempt to approach Dacotah until we acclimated him. We did everything in a more direct fashion because Dacotah has been known to get over sensitive and frustrated, which leads to huge meltdowns. But this day!!! He was sooo excited about being near the firetrucks, seeing the station, and was even taken for a ride on his truck choice. This is where I want to grab the box of tissues. We drove a short circle around the local park and when we got back near the station the LT asked if Dacotah was all done or if he wanted to go more. Dacotah says "More more more". So we drove through town and back to the station. Dacotah sat for pictures and we could tell he was getting "done". AGAIN LET ME JUST SEND A BIG SHOUT OUT TO THE LOCAL FIRE DEPARTMENT, ya'll rock!!!! Dacotah was invited back anytime the bay doors are open and he can come visit without calling ahead. We came home and as expected Dacotah went for some quiet alone time with his bot, he wasn't worried about his gifts he was just needing his space. This was a MASSIVE WIN.

Now the more crushing side to our lives. Our son is now 4 years old. He is still in pullups/diapers. We thought we had a grip on it and that we could get him potty trained until he hit a major regression with it. After soiling underwear and pants for over a week (after doing really well) we had no choice. Sanitary is not an option and we didn't want to continue exposing his preschool teacher with having to clean poop every single day and sometimes multiple times a day. Though she never once complained. She was and still is super kind and very supportive. I'm hoping we can try again in a few months. But to say I am discouraged, sure. I never would have thought that at age 4 we would RARELY go eat as a family because by the time the food comes Dacotah is screaming, bucking and hitting to leave. I'd still be changing diapers, and we would still not be sleeping from 10-6am. There are days it is HARD trust me when I say this.

I am a member of a private facebook group with other toddlers who have the same genetic condition. Dacotah is significantly behind all of them that have birthdays within 2 months before or after his. That told me that what we were seeing was not just genetic related and as heart wrenching as it was we had to accept that this could be our future. Going to the ER is a battle. Dacotah cannot tell us when he is sick, he can show us where he hurts, but when you ask to be sure the answer always changes. (For example, my foot hurts, does your foot hurt, no) Unfortunately he came down with the Flu strain A. Let me just say the flu is horrible for him and for us. We took him to the local ER on a Friday night to have it confirmed though the 103.8 temp told us. The doctor on call is aware of Dacotah and knows we only bring him in when we absolutely have to. He is amazing with him and asks us before he touches or approaches him. However, 3 days later Dacotah's temp hadn't broke at all, getting medicine in him is impossible (imagine trying to get medicine into a screaming orangutan while flying on a trapeze bar, YES it is that bad). Tylenol suppositories were our only option but the temperature wouldn't go under 102. On Day 6 Dacotah's fever was still high, he wasn't eating, he wasn't drinking, his feet and hands were cold from dehydration so we took him back to the ER. We were seen by the most ridiculous NP on call that I have ever met. He was uncaring, did not touch our son, did not take the time to ask any other questions but said he would be back after talking to the doc on call. 90 minutes later momma bear came out as our son is screaming bye bye. I signed him out AMA and we drove the 75 minute drive to the Children's Hospital. Let me just say the STAFF is amazing. We had a bit of a wait and Dacotah is repeating bye bye bye bye for over 30 minutes which makes the wait longer and you could tell the people waiting with us were bothered but no one said a word. The nurse took us back and asked to weigh him "good luck", what do you mean? Well he has a fever and he has a diagnosis of autism. Right then everything changed. NO one pushed us, no one rushed us the doc came in and asked to touch him, and looked into his ears while Dacotah is screaming bloody h*ll and said "He has a severe double ear infection on top of having the flu, and he is also dehydrated" He was given fluids and IV antibiotics (as he had never had antibiotics we were more cautious hoping he wouldn't have an allergic reaction) and guess what he didn't. We were given a prescription for IM antibiotics (the doc had tried getting Dacotah's mouth open with a tongue depressor and found out quickly that was not an option). Thankfully with my medic training from the military giving IM shots is something I'm comfortable with but it still sucks giving it to your kid. But 3 days later he was back to his normal self.

August through December

I have to be honest, I needed a break. I needed to get away from wishes and just enjoy what is. Dacotah is making progress by leaps and bounds. Yet the sting in my heart lets me know we still have a long road ahead to make life as normal as possible.

So I'll sum up August through December.  I had given up. EVERYONE fought us every time we mentioned that we thought Dacotah was autistic.  I have heard, "but he makes great eye contact" so many times I literally wanted to throw up every single time I heard it. That's great I thought, I'm glad he looks at you all of 2 seconds and escapes back into what he was doing. We had one specialist go as far as to tell us that Dacotah wasn't sleeping through the night because it was a learned behavior. I had the same doctor tell us that Dacotah bit himself just for attention and that his screaming fits in the car needed to be redirected. Needless to say I was abrupt and polite when I told him I disagreed with his medical opinion. A learned behavior when our son had never slept through the night or more than four hours at a time. But alas I regress and I'm not going to focus on that visit.

We had a review of his IEP in October, I was done playing back and forth and called a meeting with his entire IEP team, including his preschool and headstart teacher, his PT, OT, Developmental specialist, the school psych, and Dr. Sprouse conferenced called in from Maryland. At this point Dacotah has Severe Childhood speech apraxia, low muscle tone, KS, and the kind of services he was getting needed to be more focused on his genetic limitations. We changed his IEP from Developmental Delays to Other Health Impairment and got his speech increased to twice a week. Unfortunately, I still do not agree that it's enough to give him the best chance to succeed, but it was a step forward.

We spent Thanksgiving with some really close friends. We packed Dacotah's food and took it with us. It was the first time we attempted a meal with more than the grandparents in a while. Overall it went well. Dacotah stayed off in a room by himself where it was less crowded, happily eating and watching his "bot". At one point he hit behind some curtains and for about five minutes his dad and I were in a panic thinking he had found a way outside. When Dacotah is done, he is done and we left sooner than we would have liked followed by nonstop screaming all the way home. :(

Christmas was different this year. For the first time ever Dacotah was interested, he enjoyed opening his gifts and continued opening each of them. I recall last year him not caring. I am thankful for Ryan's Toy Review on Youtube Kids for showing him and sparking his interest in presents. Mamaw, Papaw came up the weekend before so he got to enjoy Christmas times two!  He doesn't understand the concept of Santa and that's okay I know a lot of families don't encourage Santa and that's okay. His ten year old sister still loves and enjoys it. Though next year we are going to let her be Santa and share with her the meaning of why Santa is important. Still there's a small part of me that would enjoy hearing him say "Look Santa Came" as he comes running into the living room. Alas, maybe next year.