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.

6 weeks and running forward

It has been a while since the last update. A LOT has been going on, a lot of thinking, a lot of working, a lot of stress and a lot of traveling. So now that time has slowed down here's our update sorry for the super long post.

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Amusement parks. Dacotah use to despise them, he would scream from the moment you sat him in a ride he asked to sit on, to the moment you got him off. We had to talk to every ride attendant to ask them to stop the ride in the event Dacotah did manage to ride and freak out halfway through. I don't know whether I should think Mr. Blippi, or Ryan's Toy Review or some other YOUTUBE friend but Dacotah did a complete 180. He rides rides and will ride anything and everything you will let him go on, and gets upset that he can't ride the big swings that go way up high. NO WAY kiddo.

So as anyone who is friends with us on FB is aware we did have a situation where an employee at one amusement park brought mommy bear out to play. Thankfully it was resolved, but here is a quick breakdown: To the lady who brought mama bear out to play today. 3 things

1) LISTEN TO THE FULL QUESTION ASKED
2) If you do not, I will not hesitate to go above your head to the ADA office here at (said amusement park) and have the problem corrected
3) AUTISM is not a visible disability, some kids with autism CAN handle a bubble show, ours love bubbles. He just cannot wait in line like you demanded. However, my husband was more than willing to wait for us.

PS. Thanks to the supervisor (name omitted), who took the time to listen, who KNEW exactly who we were talking about, that gave us 4 SAVED seats for the next show. With NO WAIT involved. Thanks for going over and beyond.

So OVER HAVING TO EXPLODE to have basic dignity given to our 3 year old.

--------------------------------------------------------------------------------------------------------------------------Our Follow-ups with a lot of traveling

We left a little over a week ago to see the dentist at UVA in Charlottesville. The drive is long to say the least. Dacotah did alright on the way up, but we had to stop about every 45 minutes for a 15 minute break. After the break he happily went back into his carseat and we made it safe. By the time we got to the hotel, we were all down and crashed for the night. At the dentist, I explained to the lady that getting a toothbrush in Dacotah's mouth was impossible. She states "But you are brushing them twice a day" *shake head* No, he won't allow a toothbrush in his mouth. "so you don't brush his teeth". Nope not in the year you have seen him, we may have managed 1 halfway decent brushing. 1... in 365 days, no it's not neglect it's a sensory overload for him. TRUST ME. 

This time instead of 4 people holding him down they used a papoose board. NOTHING kills you worse than your baby crying mommy wanting up for 20 minutes. But he survived and guess what he had NO CAVITIES ... none... nada...zip zero. The dentist on the team said he must have a great diet. At this point I was done arguing and trying to explain so I just remained silent. But if ONLY HE KNEW.... 

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From the dentist we went to see the Service Dogs of Virginia (Daddy's back has been out for the last 5 weeks so he could barely crash in the floor) But we met Gus a black lab that has been trained or is being trained to be a service dog for someone in the Commonwealth. I asked about a visit, so we could see what the program offered and how Dacotah would respond to a dog. The one statement that bothered me is "the dog won't babysit and make sure your child doesn't run out of the house" Well no CRAPOLA. I need a dog that keeps him from running away in the store, into the street, helps keep him calm in the vehicle and to help with transitioning. NOT a babysitter, but thanks for the feedback.  

Gus and Dacotah met, Dacotah freaked out wants nothing to do with the "big dog" and honestly I am slightly taken aback by how big Gus is. I can only imagine him being tethered to Dacotah and hauling off down the street. But the visit did give us a chance to ask some questions, figure out a way to transition Dacotah from smaller dogs to bigger dogs and then we will go back again. They still told us to submit the application, but a part of me wants to wait until he's a little bit older and then review the idea again at a later point. Or do as a friend suggested and train our own from a pup up so he grows accustom to the size of the dog. So we'll see. 

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We left Virginia to go to Hershey PA we were going to meet up with our family from Canada, and unfortunately they were unable to join us. We made the best of the 3 days with daddy being in severe back pain and Dacotah saying "daddy owwww" every few minutes. But he is learning that other people have ouchies. :) That's an improvement. 

The amusement park was a lot of fun. The kids and I went one afternoon just the 3 of us, and they had a blast. Dacotah watched sissy on the big rides, and she joined us on the little rides. 

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From Pennsylvania we traveled to Crofton Maryland to see the specialist that has 30+ years of working with kids like Dacotah who have genetic variations and delays. She was the one who discussed with our endocrinologist the need for T shots, when Dacotah started making the most improvement. I am FOREVER grateful because at that point she had never met us. We finally met in person on Monday. She UNDERSTOOD our thoughts, concerns, and our frustrations. She connected with Dacotah, and allowed him to be just him, while they evaluated to see how he was doing compared to other kids with the same genetic makeup. We will have her report in 6-8 weeks and we can follow-up more at that point. But she said that Dacotah has SEVERE apraxia and that is causing a lot of the self-harming, the anxiety, etc because he knows what he wants to say but he can't form the words to get it out. 

So we are going to get an IPAD mini for our 3.5 year old so he can have a talker app that will have PECs from his home environment, that will allow him to tell us what he needs, wants, if he hurts etc, which will help him form the words where he loves to echo. Fingers crossed this will be our next leap with speech. 

After the first 3.5 hours of testing we left MD and went via Metro to DC... Needless to say Dacotah LOVED the train ride. We visited the National Zoo, the White House, The Treasury, the Washington Monument, Union Station, and then made the train ride back. By this point Dacotah was tired and kept hollering CHOOO CHOOO CHOO CHOOO throughout a good portion of the ride back. One lady commented that he must like trains. Yep you could say that. 

Tuesday morning we had more testing for another 2.5 hours then it was time to head home. We follow back up with the dentist and the specialist in March for his 6month follow-up but we will take it. I am glad we have a strong support system 

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Dacotah said enough traveling and screamed 3.5 hours until we stopped in Roanoke for the night. The next morning checkout was a noon, and we stayed there until 11:55 am. We have NEVER been more happy to be back home. 

We have been back home 4 days, and we are back to his therapy routine and he is back to preschool (we started him full days) Honestly, mommy needs the break and he is doing well with taking his nap at school. (I know it sounds selfish, I have heard the comments. But raising a child with special needs is draining. it's time consuming there is no Let's go on the spur of the moment, everything has to be planned out. It sucks, but it's our life. so we will roll with it). 

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So this happened earlier today and I wanted to write about how it really is. It's UGLY, it hurts and it's our truth. These are real feelings that I have and as a mom it's hard: 

Today while walking Dacotah into therapy, a random teacher came up and said hi and asked him how he was doing today.

I told Dacotah "say Hi" Dacotah downs his head and says "no"

The teacher goes on to say, yeah I'm having one of those kind of days too. (I wanted to scream he can't talk to you, but I didn't. I wanted to say he has a speech issue, but I didn't, I wanted to, but I am so over having to explain why Dacotah doesn't/can't talk back)

Can I take just a moment to say how much it hurts. When someone tries to talk to Dacotah and he downs his head because he CAN"T form the words at that second to talk back. As a mommy this kills my heart. Dacotah can say hi, he can say a lot of words now, and I thank God, but I would give my life to hear him run home from school and tell me everything he did.

I cannot fathom how hard it is for Dacotah, Because as his therapists all said this morning HE IS SUPER SUPER SUPER SMART. He understands EVERYTHING you ask him to do. He can tell you about ANYTHING that interests him. For Instance he saw a lighthouse on the train table. I got his attention

"Dacotah have you seen a light house before"

"Uh huh, up high, big light house"

A CONVERSATION took place from an event from Hilton head when we walked up into the light house. He REMEMBERED and he could tell us about it.

So there is the good the bad and the ugly with apraxia. Travis and I have talked, the speech therapist and I talked this morning and we are going to start with a talker, "ONLY for the things he can't say" and make homemade environmental PECS to help him along. Dacotah can echo a lot of words that he won't typically say, so my goal in what I have studied and researched is quite simple. When the talker talks, I want him to repeat it back, so he can learn to associate the words with what he needs.

We are making progress there is no doubt. There are many many many positives that he is showing. But there are times as his mom I have to wish life was just a bit easier for him. But as we have said we will take 2 steps forward 1 step back and we will continue on.

A Year Post Diagnosis

Wow, in a few days it will be a year since our world turned upside down with the word AUTISM. I think we all suspected it to some degree, but let me say we still have hope. We say Dacotah has autism vs. Dacotah is autistic. Why? Because Autism does not define who he is. He is still our three year old son who is still making leaps and bounds.

I have dealt with negative comments and most of the time the positives outweigh the bad, which helps me not strike out at someone who has no clue.

The Good

So in the past year since his Dx we have come a long way. Dacotah babbles, and talks. This week he has started repeating almost everything we say. This is huge because it builds up his vocabulary. It's a small step but it's very meaningful. We were once told we would be lucky if he ever talked. He talks! So for those mommy's out there reading this Remember DO NOT let anyone tell you that your child can't or that they never will. Work with them diligently each and every day. Our babies are in there, they want to talk and we are their only hope to get them out of there.

So now for the REALISM of our life  THE BAD

Dacotah is now 3.25 years old. He is still not potty trained, it saddens me seeing the boxes of pullups sitting in the floor, and the diapers we buy for him to wear at night-time. We are working on it again at home and last night was the first time in his life that he stayed dry overnight. I cannot tell you how many times we have woken up to a pee soaked bed. Gross yes, but you know what this is our reality. I don't want to sugar coat what is, because I am tired of hiding the realities of our life to please other people.

THE UGLY:

Dacotah self-harms. He bites himself, the worst event happened a couple nights ago, we were in a drive thru (HE HATES FOR THE CAR TO STOP PERIOD). Big sister rolled her window down, so he hollers "me down" as he points to the window. The van has child proof windows with a built in safety feature, his doesn't roll all the way down, so he gets mad, goes into a full on meltdown and bites his hands over and over and over. This went on until we finally got our fries, by that point he was too upset to eat but it was enough of a distraction to stop the full meltdown. This is our reality this is our normal.

We are starting to understand that Dacotah has no concept of "Elapsed" time. We figured this when I left for my trip, came home, and Dacotah proceeded on with his usual routine as though I had never been gone more than a day, little lone six. Anyone who follows us on Facebook knows we had a special cat named Frappe, who Dacotah thought the world of, the cat went outside one morning and never came back. Well yesterday we found another cat, that looked remarkably similar with a great personality, and Dacotah started talking and playing with it and said "kitty back". It was as though we just let Frappe out and he was coming home that afternoon. It has been several months, but in five minutes Dacotah and this cat were off playing with Dacotah "talking" to him and to us.

I picked him up from daycare the other day and he ran out into the street. I know people say how can they run that fast. I have never in my life seen a child that can run as fast as he does. I swear his braces give him a turbo boost that we cannot see with the naked eye. Thankfully no one was coming, but it gives me a heart attack EVERY single time he runs.

He has figured out our keyed hasp lock, he finds the key and unlocks the door and heads out. BAH.... So I found a $25 lock that only an adult can open. We will get it on the door in the den so he can't get out of it.

I am pleased with the milestones that Dacotah has made. In reality he is still around a 2 year old level verbally, but the good part is he is growing and learning every single day. I bought "Once upon a sound" and plan on working with him on it after the holiday.

We did find out our pediatrician gave the referral to the Olson Huff Center in Asheville, so now we are waiting on them to send us paperwork, so we can mail it back and *fingers crossed* get an appointment. Someone made the comment why bother... well you know they have one of the best autism centers around and as a mom I want to make sure we are getting any and every service we need to give him the best chance of living a normal happy life.

So we will keep updating, we will keep taking one day at a time, one step ahead and we will get there.

June 22 update

Wow, had someone told me how the past two weeks were going to go, I would have seriously doubted it would even be possible. No not really, but I would have doubted it would be our reality this soon.

SOOOOooo... Dacotah is down to one sleep medicine, we give him the Melatonin to get him to sleep, but he is finally staying asleep from around 9-6 or 7am. We will take it. We also got rid of the sound machine in the room, so we just have a fan outside the bedroom door.

For the first time since having Dacotah I left him and his sister alone with their daddy. I took a 6 day trip to Canada to visit my family and friends that live up there. I hurt at the thought of leaving him for that long, but I knew deep down I needed to get away and just have some time alone and away from the therapies, the autism, the klinefelter's, the lack of sleep, etc. I just needed time to recharge. Haters are going to hate, but I have found having a few days alone by myself makes me a  better mom deep down, it's part of being an introvert by nature. Sooooo off I went. I drove, yes that's a long drive, and no I won't do it again, next time I'm flying. The first night I was about a five hour drive away, so I could have still came back the next day if I needed to. But you know what Dacotah did great, his daddy said he went to bed, he slept (woke up for about 3 hours) and slept some more. He did his normal routine without mommy being home!!! Super special thanks to my husband who played single dad for 5 nights, but kept the kids alive, well, and fed. Thanks to Dacotah's preschool teacher who agreed to keep him longer in the afternoon until my friend Jenny could get him. Thanks to Jenny for watching both kids until Travis got home from work. It was a HUGE team event.

Upon returning, one child ran to hug me with the biggest grin on his face. The other started crying happy tears. I picked Dacotah up from his preschool teacher and as soon as we got through the door he carried on with his normal every day routine, it was as though I wasn't gone at all. I have to agree with daddy on this but it's as though Dacotah knew I was gone, but he has no concept of time (so the 6 days could have been the same as 1). Either way I am glad he did great and I'm glad to be back home.

So onto the more exciting news. Dacotah is talking! Rather I should say he is talking more. He is echoing almost anything we tell him now. If we say it's over there he will look and say over there. His language is still behind, but I can tell he's ready to break out and is trying his best to start talking. I really thing deep down his brain is slowly rewiring to another part so he can talk more. I know someone once said kids with Klinefelter's tend to have part of their brain that likes to sleep, so who knows maybe it's waking up, but he is trying to talk to us more.

Dacotah is starting to flap his hands when he is really excited about something. We notice him do it more at the playground upon arriving, or at the mall where there are a lot of people around. He also do what I call crabbing. He constantly pinches his thumb and index finger together, if you try to physically stop him he screams, but so far we are able to redirect him.

We had a meeting with a lady last Friday. She said on their paperwork he would have needed to meet 3 out of 6 areas to qualify to be wait listed for Medicaid. This list is years long and only 3-4 kids are added to it each year. In less than 15 minutes she informed me that Dacotah was behind in 5 out of 6 areas making him a high priority. So officially he is on the wait list. I did find out from another mom, that Virginia is starting an ICC waiver, that should be able to help and maybe by the first part of next year we can consider getting him some 1 on 1 ABA therapy going.

ABA is a tough call. I know a lot of Autistic kids benefit from it greatly. I also know that most of the time there is a stay at home parent who can always attend the therapy sessions. Still praying that God shows Travis and I the best decision for what Dacotah needs.

We thought and talked about taking Dacotah to see the Doctor in Maryland. Last night we decided that it is not the best idea for our family. It's $1300 out of pocket and our insurance wont' touch it because it's so far out of state. It's always a long drive. Travis and I decided that the autism at this point needs to be our bigger focus and we need to find someone closer who can help with that. Now the question we have is whether to get him in to the Olson Clinic in Asheville, or taking him to UT. I'll keep you posted.

Anyway there's our amazing update and we will continue taking one step at a time forward.

Beach Vacation 2017

The ride down to Hilton Head Island was a long one. We stayed overnight a little short of half way. Dacotah hates being restrained in his car seat, I cannot emphasis this enough. So it makes longer trips AWFUL. We left on Friday afternoon and got into Hilton Head around 6 Saturday night. The traffic getting onto the island was an hour long due to multiple wrecks. :( Needless to say he was not a happy traveler, but did better than I expected him to.

We went out to eat Saturday night, I guess after being in the car all day, he was happy to get out and enjoy. He ate at the restaurant and didn't make a peep. They had a playground outside that he really enjoyed. But most of all I think he was happy to see Mamaw, Papaw, Uncle Wes, Aunt Ashley, and Caleb. It had been a while since we have all been together so it was super uber nice. I think we all agree as the boys get older we are in soooo much trouble.

Sunday morning we went to the beach. Montana and Dacotah LOVED it. I knew Montana would, but the last time we went and Dacotah was much younger he hated it. But this time he loved playing in the sand, with the water, and with his cousin. Dacotah could sit and fill up a bucket and dump it out a million times if you would let him. He didn't want to get into the water much on Sunday so he stayed up near the tent. He played so much and took a long Hard nap. We went to dinner, this time it wasn't as much fun, I'm not sure if it was the noise the atmosphere, etc. but Dacotah insisted on being outside. Travis and I took turns until the food came, then I got mine in a to go box and went outside with Dacotah. It's not knowing the triggers that make going out to eat harder. I know he has a very hard time sitting still, which is often seen with autism.

Monday we went to the beach again, and as always all three kids loved it. Another long nap, but we decided against going out anywhere else with the group for the day. Dacotah needed some quiet time. Around 7 we walked out to Harbor Town got some drinks, desserts, and let him play on the playground until he was "all done".

Tuesday Dada and Uncle Wes went to play golf in the morning. Ashley, Mamaw, Caleb, Montana, Dacotah and I went to the farmers market. Mommy found some tea that I loved. Dacotah enjoyed watching the center fountain. By the time we left Dacotah was screaming for fries. So we left to get McDonald's for lunch, while the others went to the grocery store. Mommy found Starbucks. LOL. After the meltdown, we got back to the condo and Dacotah fought his nap, but finally 4 hours later he went to sleep. I honestly did not want to attempt going out to eat because I "KNEW" it was going to be a nightmare. We went to the Oyster Factory, From my Facebook post "As usual D sat down and was eating his chicken and French fries and when he was done he started to wander. I explained to the manager he is autistic and asked if it was okay for him to just pace.

Let me tell you, the staff was OVER AND BEYOND AMAZING. The waitress in the picture let him follow her and be a guest server. Dacotah's face lit up like a Christmas tree as he went table to table. She made him an honorary waiter and sent him home with a shirt.

Thank you all for an amazing evening and for being so awesome to our son. From the bottom of this mommas heart you all made my night."

Afterwards, we went out to play putt putt. Papaw felt like joining us and playing too which was fantastic. Mamaw ended up having to take Dacotah back into the arcade about halfway through because he doesn't understand he can't just run from hole to hole. When we were done we went into the arcade where Dacotah hit a jackpot worth 500 tix on one of the games. Talk about a lucky kid. Montana said it was the best night ever. 

Wednesday morning came all too soon, but we decided to stop by the beach on the way out. Boy am I glad that we did. We saw a pod of Dolphins swimming in the ocean, a hammer head shark, and a storm rolling in. We were sad to leave the beach but Travis and I both had to work Thursday morning. The trip back was okay, Dacotah did better with some modifications that made the trip home all 8 hours was a million times better. 

We have definitely said we need to take the kids to the beach at least once a year. They love it. It was the only place that I have gone that I didn't care, didn't think, didn't feel the need to apologize for our sons autism. He could be loud and no one cared. I didn't feel judged. Going out to eat is a different story but it was nice for a instant of time I didn't care, he could just be a kid. 

I did notice on our trip that his SMOs are fitting differently already. They should be lasting about 6 months, and so far we have had to replace them every 3 months. BAH.... We have an appt with PT on Tuesday and I'll have her check them (she checked them last month). I think he hit another growth spurt in his feet and has his daddy's curse of EXTREMELY big feet, and they are flat too! 

Travis and I sent off our blood-work for genetic testing last week. We should know something this upcoming week. We don't have a full family history for either of us, so I am hoping this will fill in some gaps and voids that we wouldn't otherwise have. 

That's all I have for now, will update again soon.