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.