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.
Saturday, February 15, 2020
Tuesday, May 14, 2019
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*
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*
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.
Monday, January 28, 2019
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.
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.
Sunday, November 4, 2018
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.
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.
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.
Sunday, September 9, 2018
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.
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.
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