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.