ABA Journey Continues and update on Loki

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

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

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

The longest days

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

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

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

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

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

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

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

Come into my world and watch

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

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

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

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

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

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

A Welcoming Team

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

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

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

The Journey to ABA

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

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

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

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

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

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

Jan, Feb, and March

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

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

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

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

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

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

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

August through December

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

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

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

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

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