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.
Sunday, November 4, 2018
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.
Monday, August 27, 2018
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!
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!
Wednesday, August 8, 2018
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.
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.
Sunday, July 15, 2018
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.
Saturday, June 30, 2018
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.
Subscribe to:
Posts (Atom)