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. 

Hard Real Life Decisions

I know I have said this before, I always had big dreams for my kids, I thought they would be 100% healthy and have no issues. Obviously reality hit when we found out Dacotah had an extra chromosome attached to his DNA that causes a lot of issues in itself, but the biggest blow really came when the word Autism was spoken. Did I suspect it, yes. Did I want to know, yes and no. I had the following conversation with an OT the other day.

You know the hardest part is accepting a label that is placed on your child.
OT: I can understand that, but the label doesn't have to be there.
I really think when Looking at all aspects of labeling our kids with ADHD, Autism, Sensory disorders etc. is not a bad thing, because it gives us a place to start, it gives us hope, and most importantly it finds the services they need to have the best life they can have. It's true, without the autism diagnosis a lot of his behaviors would be attributed to terrible 3s, which isn't the case. I'm sure there are some parts of his behavior is 3 year old behavior, not arguing that but it gives an explanation of why he does some of the things he does.
OT: That does make sense.

So while I HATE HATE HATE having the diagnosis, I have found a great support system locally, other parents live in our town who also have kids on the spectrum, and while each child is uniquely different, it helps as parents to have someone who says I understand what you are saying.

A GPS tracker was suggested for Dacotah. I honestly hate the idea, but at the same time, he will soon start school and be away from me. With a real time tracking device I can see that he is still safe in a secure area... Then the realization SMACKED me in the Face yesterday.

Dacotah is making progress. We didn't know if he would talk, but he does. But there is one HUGE PROBLEM. Dacotah cannot tell an adult his name, address, phone number, parents name. He cannot tell us that he is sick. He has started telling us ow if he falls down. But like yesterday he fell on the ground hard enough to scrape his knee, he whined all of 15 seconds, he was bleeding and never mentioned that he had a boo boo or that something "yucky" was on him. As a mom this saddens me. I want him to say Mommy I am hurt, can I have a band-aid, can you kiss it and make it better. He is over 3 years old, this is NORMAL things he should be able to say and can't. It's HARD...

A mommy friend suggested "tiles" you can check them out here https://www.thetileapp.com/en-us/products I can attach one of these to his zipper on his compression shirt so he wouldn't know it is there but I can track him in the event he gets out of the house. I hate to admit it but it's happened before TWICE (due to an unlocked door). It's a matter of time with an older sibling before something like that happens again. I want to be prepared instead of having my stomach drop at the realization I have no clue where to look. It has real time tracking which I LOVE.

Another product suggested by another mom who lives the autism scare on a daily basis is the IF I NEED help tags found here https://ifineedhelp.org I LOVE this because I can put his information into a QR code that EMT, police, or anyone, can look to see his name and contact information. These can be zip tied to his shoes, on a loop, etc.

The other option is a GPS Tracking ankle device that the local law enforcement can attach to his ankle. This is probably the WORST option in my opinion. Life saving sure, but with his braces I am not sure how comfortable it would be because it would go further up his leg. So if the Tiles and Tags can do what I need them to do, this would be the absolute last resort.

I will have a meeting with the fire chief again soon. While I was thinking about how I could teach the local law enforcement/emergency workers the following SCARE came to mind. What is one thing that everyone offers a child in the event of a traumatic event. Usually a stuffed bear and candy. WHAT IF that child is allergic to Milk and Eggs and cannot tell the EMT....

These are our EVERYDAY real life fears. It's scary. I mean before I was worried about the looks we get when we park in a handicap access lot and the negative things we have heard about how no one in our car is disabled. FIRST they have obviously never had their heart race as their child broke away at a full scream run into a parking lot with moving cars. Yes, we get to park close to the entrance, and sometimes even that is too far. Yes we get a pass for amusement park because crowds and close confining spaces freak him out. But I WILL NEVER hide my child or prevent him from enjoying life the best way he knows how.

I am his advocate, I am his mother, and I will do whatever I can to protect him. Step by step will march on. Until next time.

Post diagnosis 6 months

Wow, had someone told me six months ago that with strict regimented at home therapy, lots of sleep, lots of worry, add in stress, and a whole lot of unconditional love that our son would make some significant improvements I most likely would have laughed at you. But I was bound and determined to try anything and everything we could.

So for those new to reading this blog not only does Dacotah have Klinefelter's Syndrome which is a genetic disorder that causes significant developmental delays, but he also has autism. To what extent he is on the spectrum at this point I can't tell you. Because he is exceeding any expectation at 18 months that we thought he would have. Yes he is still behind, but he is improving.

So the compression shirts from SPIO are around $140 bucks EACH.... They are expensive, but they have made a HUGE improvement with his overall tolerance with being around new people, going out in crowds, and with focusing on his therapies. Would I buy them again, Yes, yes, and double triple yes. They are that wonderful. (NO I am not getting paid for my review). But I can tell you some things work for different kids. Dacotah hates the brushing technique, but can handle the compression shirt. He hates a weighted vest, but he loves his weighted blanket at naptime/bedtime.

Sleep... Sleep is an issue associated with the autistic part of his diagnosis. Dacotah does not sleep well or often unless he has both medicines. One helps him fall asleep the other keeps him asleep. It has been significant in helping Dacotah with tolerating change and dealing with a mommy who stresses his need for talking. Yep I catch myself even with big sister of saying "say this" lol. He still gets whatever it is that he wants but he has to least attempt to say whatever IT is.

He still has a long way to go with OT and PT. His SMOs still fit him well and his shirts should last another 6months to a year. He will have OT and PT twice each during the summer. We opted to take a break from speech for the summer because his therapist is out of town and I don't want to introduce him to a substitute for 1-2 visits if we don't have to. We have his summer IEP meeting next Monday. Thankfully with asking MANY MANY MANY questions I think I have a small understanding of the IEP team/goals/what we need to do etc. We'll see how he does now-October for his yearly meeting and then see where we are with the current PT/OT schedule.

Speech is coming along slow but steady and we are able to understand more and more words. Since bringing the dog and cat into the house he has talked more. However, it still has to be something that interests him. With KS it's typical for them to not talk until age 3 and have a language burst at some point between ages 3-4. It's really hard at times when he tries to tell us something and we simply cannot understand him, which turns into him screaming inconsolably.

Car rides....are still a nightmare.... Running ahead and darting away from us... still a nightmare....breaking down and screaming in a store/restaurant....still a nightmare. I am going to put more effort into finding an Autism Support Dog program for him. We have noticed with the dog is around he is much calmer and he talks more. The trickiest part for me is trying to figure out how that would work or even if it would work with school. There are a lot unknowns and for my "control" freak mind it causes a lot of stress and anxiety.

He enjoys going to the park, playing on the slide, climbing everything at the park including the playground labels for 9-12 year olds. He loves being outside and loves trying to find a way out of the house to get outside anytime our back is turned. One good thing about a dog it would be able to track if and when Dacotah manages to get out of the house on us again. As a parent it is always scary and it's always in the back of my mind.

We went to the amusement park yesterday. Thankfully we had a mom working in the handicap accessibilty center who also has a special needs child. Let me just say she was absolutely wonderful with Dacotah. Dacotah never got upset, didn't cry, and was calm. It's like he knew. We did notice over the weekend, he is starting to flap his left hand when we are out in a crowded environment. It has happened on more than several occasions so it's not an accidental thing. I don't want to prevent him from stimming if he needs to, but it's hard not to say hold my hand to see if that helps. So far it hasn't cause any issues, so we will just keep a watch on it. Lining things up is still a constant whether it is food, toys, or some random rocks. He slings everything he can off the couch, tables, etc so he can use it to line stuff up on. IF you ever visit my house unexpectedly watch out for the land mines. But you know he is happy and that's what matters. His sister and him are loved unconditionally and if our house is a mess so be it.

He still isn't able to go to work with me. In fact I had to change our lab schedule at the office again because he was trying to grab the lab stuff when I was in the room with a patient. Sadly patients don't understand why I can only draw one day a week at the time I do, but it's safer for everyone involved. I work while he is at school and can finish everything else at home. It has worked great so far. I never want to have to choose between my kids and my work, and I hope I never have to because without a question it'd be my kids. But I have a terrific and understanding boss, I don't work for a corporation who only cares about the company and could care less about what happens in the employees personal time. That has made a world of difference on this journey.

Well summer vacation is a few short weeks away. I probably won't get around to posting again before our trip to see the ocean with our extended family. I am super excited.... Until next time we will continue taking one step at a time and forward we will continue marching on.

Dacotah had the flu and ate a new food

Friday a week ago through last Friday Dacotah was super sick with the flu. Normally it's not a big deal for his sister we give her some homeopathic remedies and her symptoms go away and she's fine, no fever, no fatigue, etc. Sadly for Dacotah we learned that would not be an option. Why? Because he refuses to take any kind of medicine by mouth. I have heard every suggestion in the book, I have tried every method I have heard and read about. Trust me been there done that. Unfortunately, by some ways unknown by me, he can spit it from out of the depths of his throat all over him, us, and anyone nearby. We have dealt with it ANY TIME he needs anything orally.

Unfortunately the only fever reducer that comes as a suppository is Tylenol. Against the flu it has about a 3 hour time span before Dacotah's temp started to raise again. The alternate would be Ibuprofen which is a oral medication. Reread paragraph one if you want to know how that went. So long story short he maintained a temp of 102 for 5 out of 7 days. The other two days his temp was 103-104.1 We kept him in nothing but a pull-up, and showers/baths multiple times throughout the night.

Giving medicine is a royal pain yes, but the hardest part for me is knowing something has to be hurting and he doesn't have the words to tell me or his daddy where, what, or how bad it is. The first 3-4 days wasn't awful, but days 5-7 he would say mommy night night any time we would bring him out of the bedroom. If I left the bedroom he would whimper but was too tired to scream :( Thankfully two rounds of osteopathy and he was on the mend. By Saturday he was back to semi-normal, no temperature and his energy level was around 75%, by today he spent 2 hours at the park with Daddy J (my dad) playing until he was worn out and ready for a nap.

His OT and PT was cancelled last week because he was sick, so when we go this Thursday (it was bumped due to spring break) I am going to have them start working with us on how to get medicine down. I'll work with his speech therapist to see if we can have cards specifically for "being sick". I am glad he talks but the things he talks about, doesn't help us understand him or what his needs are.

WE HAVE  A NEW FOOD, he devoured six LARGE strawberries yesterday. He took a look at a fruit and veggie tray and ate every strawberry in the box. Hey I'll take it. I think that's the first new food in six months at least. So MAYBE just maybe we will have another new food in a few days.

I think I have given up the idea of going to Maryland. There are two reasons, one the lady who has a lot of experience with his Klinefelter's isn't a "doctor" She has a Ph. D. in education so the insurance won't pay for it, nor reimburse the $1300 for a visit split over two days. The trip is nearly 10 hours to drive and Dacotah does not do well with, so I'm looking at transferring him from UVA in Charlottesville to UT for the speech, Klinefelter's and autism. He was super sick last week so I'm hoping by the end of May once I graduate college I can turn full attention on finding a new group that can help.


Oh before I forget, we took Dacotah to the local egg hunt. The looks we got for arriving early but we did stay in the vehicle until it's start time. We were asked if we wanted to join the bunny for his walk from the local library down to the park. We declined without giving a reason. But honestly Dacotah would not have tolerated the crowd, the music, or the rabbit. :) So we waited until the split up the age groups and took him out on the field. He and I walked halfway across before I sat him down to find the eggs. He picked a bunch up and put them in his basket, then motioned for me, I told him I couldn't so he continued picking them up and had a lot of fun doing so. It was a lot different as last year he wanted nothing to do with them. Thanks Ryan's Toy Review. It helped a lot.

Frustrations from a parents point of view

Another 2 weeks has gone by, how is that even possible? In those two weeks a lot of things have come to mind, every scenario, the present, the past, the future, it's all in there. So here's a few questions I have asked myself.

There are days when Dacotah other than not talking as much as another 3 year old, errr or a 2 year old for that matter, seems like a normal child. Slightly tall for his age, super loving, and loves playing outside. I question in my mind making more PECS cards to see if that would give him another communication boost as he has learned the words for the first set I made months ago. Another mom suggested the proloquo2go for his tablet, I hate the price, and I'm afraid it will make him to where he won't want to talk to us. He will just push a button that talks for him.

Going to playgrounds, he loves it, his sister loves it, I hate it. Why? Because I cannot help but notice how far behind he is. Yep, I find myself constantly comparing him to others. I don't mean to, but I do. I hear them say "hey mom, watch this" "can we go get ice cream when we leave here". I'm not talking about the 5-8 year olds, I'm talking about the "normal" kids who are 2-3 years old, his age. I get depressed and sad and there are days I wonder when his time to talk will be. Yes, he is making progress and yes it is painfully slow, but it's still hard.

I have come to accept that it is okay for me to question, to be upset, and to wonder what is to come. It doesn't make me a bad parent or a bad mom. It just means I care and I want what is best for my children. That is not wrong of me.

If there was anything I wish people would stop saying is "I'm sorry" I hate those words. It's me, it's personally a problem that I have, because I don't understand why they are sorry. They haven't done anything wrong so why apologize? I wish they would stop saying he's quiet, he's shy, he'll grow out of it. People listen to me when I say he is 3 YEARS OLD, he is on a 2 YEAR OLD level. That means he is 1/3 of the way behind his peers who are the same age. He may not grow out of it, this may be his "marker" He may always be 1/3 behind and that's okay, nothing to be sorry about. He will talk to you, but it has to be on his terms in his own time. He is not shy, that's not the reason he doesn't talk. Let him approach you and he will smile and say "this" as he shows you something. He will say Look and point to what it is he wants you to see with him. He gets excited.

What I wish people would say.... I wish people would ask randomly how we are doing, instead of pretending we don't exist. That has been super hard for me. Montana's friends ask her why they have to come inside to play, or why they have to include her brother when she's outside playing in the yard. I wish they knew how happy and excited he is to join in their game of hide and seek. He tries to count with them and he loves to seek. I would love to go out to eat with our friends from church, but we can't because it's hard enough cramming our food down fast enough when it's just us with Dacotah. But did you know, we enjoy having friends over for dinner, so Dacotah is in his "safe environment".

I have contemplated going to Maryland in June to see the genetics doctor regarding his genetics. After da da (Dacotah's word for daddy) and I talked, I think we are going to try to find a place closer to home towards Knoxville. It's 2 hours vs. 10 hours, and it's covered by our insurance instead of $1300 out of pocket. What I am hoping to get? Well it's like I explained to someone today they have developmental guides for premature babies, maybe someone could tell me what "chart" would be best so we know where best to push Dacotah, where he is within normal limits, and where we need to back off.

I was able to make a contact with the local autism group. They meet in April so I'm hoping to attend that meeting to find out what resources are available to us where we live. Which sadly isn't very much. The closest respite care is in Johnson City, not sure how that works, it may not be for us, but it will be good to connect to see where what direction we need to go.

Tomorrow starts "Autism Awareness Month" I will leave you with a quote "If you've met one individual with autism, you've met one individual with autism" -Stephen M. Shore

The above quote is so true and soooooooo very frustrating. There is no guidebook, this a fly by the seat of your pants, drop back and punt, do the best you can.

Great update

Dacotah is jumping, for those of you not on our FACEBOOK page. Dacotah is officially jumping with two feet off of the ground!!! He is still trying to talk, but it's about things he wants/needs or just things that are of interest to him. It's small talk but I'll take it.

He is also allowing us to read to him. Granted we cannot get through a full book (including toddler books) but he is showing some interest FINALLY. I found him some books at a local consignment sale that says "Let's go to..." and it has different places such as school, hospital, doctor, playground,etc. He likes them enough to line them up, so I'm hopeful he will let me read to him. I may change up his bedtime routine slightly and try reading before bed.

Today was his last day to see Dr. Los, his endocrinologist. He was very pleased with the results and how much Dacotah is able to do since he started the T-shots. :) I too am very pleased and was glad to find a specialist who was open to new research. It has made a HUGE difference. He doesn't have have see endo again until he is somewhere around 5-8 years old. At that point a decision will be made on whether a second round is a good idea based on updated research in 2-3 years. We know he will need it for puberty so a middle stop to see would not be a bad idea.

PT, OT, and Speech all saw him in today's visit. It was Chaotic for this momma, but Dacotah was a champ. His attention span is 1-2 minutes which is typical, but it drives me crazy that he goes from one thing to another to another. They are slowly working on increasing that. But in the meantime his school therapist are amazing. I love them all. In another month I will start the discussion on summer therapies and see what I need to have in place for OT and PT. Speech is out of the question, but I am sure I can find us stuff to work on so he doesn't lose what he has gained.

Biting... oh geez.... That was brought up today. He loves to bite especially when he is frustrated. Montana blocked him from going into the kitchen and he bit her on the stomach. Sorry I can't say I blame him. Sad but true. She loves to irritate him. I am hoping in a couple of weeks I will know the best way to approach her and we can find a middle ground.

Travis and I have started going out individually to do things on a weekly basis. Sometimes we take Montana along, sometimes we go to the store or something without either kid. I love these moments. I love my family don't get me wrong, but I need time to reset so I can be more available to them as they need me. Like the old saying goes "you can't fill someone else's cup if yours is empty".

I would like to eventually find someone we trust to watch them for an afternoon or so a month so we could go out for the day or even overnight. I'm sure Montana would like to go somewhere with just mommy and daddy without bubby sometimes too. This is something we haven't done since Dacotah came along.

Anyway let's get ready for class. I cannot wait until May.... Graduation is in sight and then I am done for a very very long time.

Monthly update coming to the realization of what is...

Dacotah's party was anything but a nightmare. Mamaw and Papaw Pickell came up, Aunt Ashley and Cousin Caleb, Jenny and our two godchildren came over, oh and my dad came too. I thought the small party would make it easier for Dacotah.... My Facebook post says it all...

  "My child ran off to be alone during his party. It was immediate family, in his own home. He absorbs into his own shell. He comes out briefly and I cherish those normal moments. But, he never sleeps without being medicated (and nights like tonight that doesn't phase him). When I see a child who is younger than him interact, answer questions, sleep like a charm.... I can't help but feel envious. I try not to its just I guess I am fighting my gut instinct and it makes it that much harder."

For the record for those not on facebook, he didn't go to bed that night until after 2AM. 

The stemming responses are getting worse. He turns the lights off and on. He scratches himself constantly until he leaves marks and scratches that bleed. He lines things up. He screams. He throws himself onto the ground in a massive heap. He bites himself out of frustration..... oh the list could go on. 

I had fought over and over in my head and I came to the conclusion today. That 3 doctors/specialists, 3 therapists, and 2 alternative medicine people cannot be wrong in their diagnosis of Autism. I let the argument go off in my head hoping the school psychologist was right and all of us were wrong. I am resigned to the fact that the "label" helps me understand the amount of patience and understanding we are going to need. The biggest downside unfortunately is where we live. The support system isn't there. No one is open to their child diagnosis, so it feels as though we are alone. Maybe my opinion is wrong and we aren't "alone" but I notice how we aren't invited, how no one stops by, how soon my dad leaves as soon as he walks into my house. It's lonely. I think maybe that is what has made this 10x worse for me to accept. 

Daddy says it best when he says "it will be a challenge but he is our son and we love him and do anything for him. Eventually , especially as smart as we know he can be, he can live a somewhat normal life."

The bottom line is he is our son. There are going to be the good days where it is as though nothing is wrong. Which will make the doubters doubt, including his mom. Then there are going to be the days where the realization of what is, brings me to my knees and I cry for the little boy we call our son. But I will not give up hope. I won't stop writing the blog, I won't make it full of happiness and joy so people will read it. I'll put our feelings into it. Maybe if just one other momma out there reads it she knows she is not alone. 

Montana broke my heart into a million pieces when she said she didn't understand her brother. Obviously kids her age realize Dacotah is different. Her friends notice. I just wish I could tell them that being different is okay. Here is why Dacotah wears braces and tight fitting shirts. I can't imagine how scared she must be inside. Getting her to say anything about how she feels is proving very difficult. Nope before you ask she is not forgotten. I've just got to find her the right support that she needs so she can open up. 

The screaming in the car gets her the worst. There are days we can drive for hours and Dacotah is 100% fine. Then there are days like recently where he screams nonstop over 30-45minutes. But the smile and laughter he provides makes it all quickly fade away. 

A Letter to my Big Sister

Obviously Dacotah did not write this himself, but I was approached by his big sister last night to which she said "it's hard because he has autism and I can't and don't understand him". So I tried to address the things she sees and hears from her brother's potential point of view. It may be beneficial for others too, hence why I decided to share it on his blog.

Dear Sissy,

I wish I could talk so I could help you understand me so much more than you do already.  Mommy told me you don’t understand me because I have autism and developmental delays which keeps me from talking to you the way you wish I could. Trust me I wish I could talk to you in a full sentences the way your friends talk to you every day. But God had a different plan when He decided to make me.

I am not stupid, despite what some people may think or say. I still have feelings just like you. I get angry, sad, hungry, upset, loved, just like you do big sister. I can’t talk in full sentences, which makes me very frustrated and I scream sometimes for a minute until you figure it out, sometimes for longer because mommy and daddy can’t understand me either. These things can upset me too because I feel like I am stuck and cannot tell you what I feel inside. You are not alone in not being able to understand me because I don’t understand it all either. I do understand what you say to me or about me, did you see I went to pick up the ball you asked me too, or I went to hide during hide and seek?

I know you get upset because it seems as though mommy and daddy and the therapists spend a lot of time focused on my needs. But did you know they spent a lot of time one on one with you when you were small? No, you didn’t need the therapists like I do, but that’s because God made you special too. He made you with a heart full of love for others. You have a big heart and want to help people and that is an amazing super power that God gave you. Did you know some people don’t love at all?

Well just like you I have a special gift too, I can hear and see things that you see and hear differently. The sun light that shines down gets into my eyes, it is soooo bright that it makes my head hurt and all I can do is scream because I can’t tell you what’s wrong. Did you hear the rain outside on the roof, while the cat scratched the carpet, and riley barked to go outside, or the hum of the fish tank, and my tablet music going all at once? I bet you heard just my tablet because it was the loudest. Because of my special gift I can hear everything all at once. For someone my size that is scary and so I freak out and cry. Do you cry when you get scared?

Did you know I love it when you and your friends play with me instead of ignoring me? Imagine yourself in gym class and the other kids get picked but you have to sit out. Does that make you sad? The same thing happens to me. I love to play with you even if I can’t talk to you. I enjoy the moments we get to play together and I wish they were more often. I love when you play ball with me, when you play hide and seek. Did you know, you could even be a part of my team and help me learn how to talk to you and everyone else. Wouldn’t that be super?

I know you don’t understand why mommy is tired all of the time. I know so I will tell you, last night she woke up 3-4 times because I kicked her. I woke her up wanting water. I woke her up at 3am because I wanted to get up for the day. So she gets up too even though she is tired because I am not big enough to be up by myself yet. You are a big girl and she doesn’t have to get up with you unless you are sick, but I bet if you needed her in the night she would sit up with you too. Mommy has to give me medicine that helps me sleep, I have a super natural ability in that I don’t have to sleep as much as you do. Which makes everyone else super tired and very cranky.

There are some things that you do to me that makes me very upset, like when I tell you no when you try to change my shows on my tablet. When you tell your friends no, do you get upset when they don’t? Same thing goes for me. I don’t like being touched, so if I pull away from you please leave me alone. Don’t pick me up if I am screaming no no no. If I want a toy that you are playing with, could you offer me a different one, or perhaps could I play with that one just for a minute, I promise I will give it back.

You know what else? I know you wanted a little sister to play with. I have heard you tell mommy that several times. God decided to send me instead of a sister, because he knew we would grow up to be best friends. He knew you could give me so much love, because of your big heart. So He personally selected you to be my sister for all my life!!! So in the moments when you are angry and frustrated, and it seems like I get all of the attention, remember that you are important too. 

You are my BIG SISTER and I LOVE YOU so very much. I cannot wait until I can talk to you so that you understand me, but in the meantime we can play together, and I can learn, even if it takes me a little longer, we can get there one step at a time.

Love your little brother. 

The transition to IEP begins

While I can't say I am overly excited about losing Dacotah's current OT, the time has come that in 11 days he will transition to his IEP goals. I am nervous and excited. Excited for the progress he has made, but nervous for what he is doing/not doing that he should/shouldn't be doing.

I'm going to be honest, I am going to miss his OT Ms. Mel, or Ms. Moo as Dacotah loves to call her. When you get use to seeing someone every week for months, it's really hard transitioning to a new OT with new thoughts and ideas. Not necessarily a bad thing, but I have always had an issue with change. (Unfortunately at age 33, it has not gotten better). So next week will be her last "official" visit.

Thankfully he gets to keep Ms. Pat, who does his physical therapy because she is part early intervention but also works for the school, so that is one change we don't have to transition to.

He will have Ms. Courtney for speech and Ms. Kelli for OT (OT through school starts in March when Ms. Kelli gets back from a leave of absence). I met Ms. Courtney today and it's a sigh of relief when you meet someone and you can tell they honestly care about your child. Instead of diving right in with Dacotah she is going to introduce herself in two weeks with Ms. Pat during his PT visit and let him warm up. She asked a lot of questions about what we had been working on, what we are currently doing, and what our goals are.

He will see Ms. Pam for his developmental goals at his preschool.

Everything is set up for once a week every week until summer. At some point before I am making a list to give to his physician's to see about having extended summer. We have come WAY TOO FAR with progress to go 8-12 weeks with nothing. Granted I am a hands on parent and we could do it, but the support system is much easier with everyone working together.

His talking is starting to mumble again. Maybe it's random, but it seems as though 3 weeks after the last T shot is when he stops talking as much. Maybe it's just the full moon. But in any case it is a week of frustration when he just echos back or just says what he wants. Getting him to focus for more  a few minutes the past week has been a total loss cause.

I have said for a while he lines things up. A LOT, this is not a one time and I'm jumping to the conclusion something isn't right. This has been going on for years. At least 2 and it's not improved. I originally thought it was typical child play. But I have had several mommy friends both old and young who state their kids never did that (especially at his age) nor at the rate he does it, it's one of the more clear autistic traits that he has. Today after his appointment with endo for his third shot (yep it's already been 3 months), I took him to the bookstore. They have board books that have wheels and look like cars. He lined them all up once, then drove them to their new location and lined them up one at a time.

While at the bookstore I did find a book about Autism, just flipping through some of the pages, there are signs that are there and they are prominent. But you know what the goal is to give him all of the help and support that he needs, continue working with him to develop his vocabulary and work on the social skills. Thankfully we have a great start with his receptive language being right where it needs to be.

He stopped saying his colors, or I should say he stopped correctly saying the right color. I am hoping it's just a phase and that it's not "lost" again. I wasn't as structured with him the past week with our trip to Indiana followed by craziness at work. So we need to get back with that this week.

So in the meantime let's go plan his third birthday party, it's going to be this coming weekend with just his grandparents, aunt, and cousin. The smaller the group the better it is for him. The best part is we can have it at home where he is comfortable and he can come and go as he pleases. He can have a small lunch party with his school friends on his actual birthday and then enjoy all the extra attention we can give him that day. (As if he doesn't get enough already) HA!

Leaps and Bounds and almost 3

It's hard to believe it's been a month since the last update, and a month from now he is going to be 3 years old. What's more incredible is seeing the DRASTIC change in his tone and speech in the past 6 weeks. So here's a back date.

To date he has now how to treatments of testosterone injections through the endocrinologist's office. All I can say is WOW WOW WOW WOW, I wish I had known about it two years ago. But.... PT, OT, and us are all astounded that he's talking more, he has more upper body control, and is crossing the midline when he plays. The weak muscle tone in his back and shoulders is drastically improving as well. It is our hope once the third shot is done he will be good to go. Though Dr. Los did say he is not opposed to giving him four doses if he needs it. Kids with KS do not make enough Testosterone and that causes the poor muscle tone, which adversely affects their speech.

This week was the FIRST TIME ever he was able to say Truck. He would try but would end up blowing air out because he couldn't make the word. Now he has no problems. I picked him up from school last week and asked if he wanted to go home or to the bank. Plain as day he says "bank". He is making progress and I am super thankful.

I still get shell shocked when we go out, and there are younger kids talking in full on sentences and he still struggles to put the words together. I realize we have come a long way, but we still have a ways to go. BUT that's not going to stop us. We will get there.

Travis and I made him the appointment to go see Dr. Sprouse in Maryland in June. Despite the expense we feel that it will provide us with a lot of insight in what we need to work with him on, and what we can expect in the long run with him as far as how the genetics will come into play.

We modified the order for his compression vest to a TLSO but we can take out the rigid supports and the insurance will cover it. I'm hoping it will be ready when we go back to the Orthotics guy next week to pick up his SMO braces. He has outgrown his other set. (they are suppose to last 6 months, he barely made it 3).

We had an updated IEP meeting with the school here and he qualifies to for OT as well. So in March he will have Speech, OT, PT, and developmental therapy. They increased his PT to once a week instead of every two. We also applied for him to have a one day a week Head Start visit.

Going out to town with him has gotten sooooooo much easier. Ha we went out to eat one day a few weeks ago and the lady was clearing the tables and scooted a chair, I was waiting for him to freak out. His head shot up and his eyes grew wild as he tried to locate what made the noise. We reaffirmed that he was okay and he was safe, a few minutes later he was calm as though nothing had happened.
Our van DVD players died, so mamaw as able to get him a new one with a bigger screen for an early birthday present. He ABSOLUTELY loves it.

We will update again when in a few weeks.