Monday, June 20, 2016

OT, Speech, and road trip

Mel came over on Thursday for Dacotah's OT appointment. I went over my concerns and he is definitely self soothing and/or stimming by scratching. The compression shirt online is the only way to know for sure if he will tolerate it. We attempted the rash guard shirts but they were simply too loose. At one point he was shirtless and Mel barely touched him. He moved away and scratched where she had touched excessively. She mentioned to that he is displaying OCD along with sensory, which from what I read go hand in hand. I know everyone says he makes good eye contact and he can listen to any and all directions and do it, so that's the two things that aim away from him being on the spectrum. I still plan to take him to a behavior health specialist and a developmental health specialist. We are still doing heavy work and sensory swings and he doesn't have near the meltdowns at home, or in any environment he feels safe in. However, the resources we use at home doesn't work in town. So after discussing everything, I asked Mel her thoughts on upping OT to once a week. It has to be cleared with the EI coordinator, and it will allow us to have "field trips" out to the Mini Miracles facility in JC (hoping as an outpatient visit). She doesn't think he is quite ready for OT in the grocery store or in a restaurant yet, why for my current sanity level I am thankful we aren't attempting that yet. She mentioned maybe trying to get him into daycare so he can start interacting with kids. Unfortunately this will have to wait until August 24th, when he turns 2 1/2, and here is why.

Side track: I want Dacotah to go to our church daycare: reasons why: the staff there are great with the kids. Big sister started there when she was 2.5 and has learned sooo much. But they are also familiar with food allergies and are located literally 1 min from the hospital, 2 min from home, and 3 min from my work! So in the event of a major meltdown, allergic reaction, or you name it, I know I would have immediate contact with someone. The thought of daycare does scare me, I would love to have field trips to the school on Mondays or Wednesday's prior to him starting, but the mommy instinct wants to find someone to watch him at home during lunch or snack time.... The thoughts aren't of what could happen but when will it happen that someone drops a cupcake on the table he grabs it and we are rushing to the hospital...... Ack!!!! Or someone forgets to wash their hands and he wears a handprint on his arm all day! (This has happened when he was around a year old).....

Okay enough freaking out post!

Friday afternoon Katie came over for speech she got him to say No, so it's not lost! He is still saying mine and after getting him frustrated he finally told her mine. Her main goal is trying to help us cut out nursing completely so we can both sleep. Sleep??? What's that? The weighted blanket helped a lot in the beginning but he's back at every 2 hours from midnight onwards! I am hoping he will have a speech explosion in the next few months, even in the next few days would be even better! In the meantime... While we wait, I am going to make him some PECS cards for him to use along with some more simple signing. This should help down on his frustration and maybe we can build a communication bridge and he can let us know if he is happy, sad, itching, upset, etc! We are also going to try getting his speech to once a week as well. He can do EI until he turns 3, so the more visits he can get the better!

Friday evening we heading to Harriman to see Papaw and grandma, the drive down was a mix of fussing... Content... And screaming. Why??? Because the sun flickering in through his window and from the sun setting in the West shining directly on him...... Virginia has tinting laws for Windows, I need to see if there is a waiver for at least his side of the van that we can darken in and have a paper in the vehicle due to his "needs" I agree with the law that it protects us and law enforcement but no tinted windows doesn't work for sensory kids. At least not mine.I don't know who was more excited to see who Papaw or Dacotah, guess we have to say it's a tie!

On Saturday morning they went to watch a cousins kid play fast pitch softball, daddy went to play in a golf tournament and so I decided to take the kids to Roane County Park. They had a great time, Dacotah tolerated the swings much better than the last time and of course mommy had her camera to grab some really nice shots! Dacotah said Duck, duck, duck, eeee duck!!! Yes he said it in context as there were two ducks by the lake!!!! He heard Montana say it. I am beginning to wonder if she is the missing communication piece as that is two words she has gotten him to say in a week, the first being mine! After the park we made a quick stop into a local shop and then we headed back home.

Sunday morning we went to church and I took Dacotah to the nursery. There is a little boy who is around 3, who has been diagnosed with autism, he rarely makes eye contact and stims by randomly screaming, today he was screaming much louder than normal and I couldn't tell which one was crying. When I went back Dacotah climbed into my lap and would try nursing for comfort every time the little boy would scream. Usually Dacotah doesn't seem to care and continues playing, we went back into the sanctuary as service was over. Despite there being a LoT of people he stayed next to me (granted I was giving him gentle squeezes when I felt him starting to tense up) and he marched right out the door and outside faster than I would have thought. He wanted to play on the swings and swing he did... At least 20 minutes total!!!!! Where did this kid come from, my arm was literally tired from pushing him so long but the weeeeeeee weeeeee weeeeee weeeees made it worth every moment.

We spent the afternoon napping, he fussed a good 10 minutes today hugging him didn't work so I tapped my leg and he finally went to sleep without nursing again. I told Jean later that's the hardest thing I have done is telling him no, but if I am honest I am so over and done with nursing. I have been mentally for the past year but held on hoping he would shift and self wean. So we will eliminate the final daytime nursing for nap over the next week and then go from there. Hopefully by August we will both be nurse free at night as well.

Oh another thing Mel mentioned is his sensory issues seem to come from all sensory areas. The light from the sun/headlights is vision, overstimulation noise from hearing, does not like things or people touching him for touch. Super picky eater for taste.... Nose well I can't say what he smells vs what he doesn't. So we will go with 4 out of 5! Usually you are dealing with 1-2! So that makes Dacotah's case a bit more complicated.

In the morning we will make the long drive home, hoping for a relaxed trip, but with the morning sun you never know


Wednesday, June 15, 2016

Notes for mommy

Dacotah scratches a lot! And by a lot I mean he scratches himself over and over and over until he gets rashes and bleed from it. He has done this for as long as I came remember. In fact a few moments ago he started scratching in his sleep and will continue doing so until I repeat several times to stop scratching. In the car, at the pool, outside, and in his sleep.... Is it possibly sensory stimulation?

Head banging, if he isn't scratching he pushes himself into the wall repetively while asleep... Again enough until I pull him back down and wake him just enough for him to "reset" for a lack of better word.

Sleep disturbance and startle reflexes. The hospital where he was born made him stay an extra day because of his startle response! The doctor told me that wasn't normal infant behavior and she wanted to watch him overnight to make sure he was okay. Little did we think then that there was something genetic causing it. Kids with SPD don't sleep well. He hit that on the head, hence why most of my blogging is done in the middle of the night. Granted he is asleep currently as I'm writing this down.

I tried posting a video on Facebook last night he will march around in a circle and clap his hands. It's so cute and I love it but he doesn't jump. He loves however for me to hold him and jump with him!

I called and made his appointment with the specialist and we see her at 1:30 on the 27th! I am not nervous, honestly at this point I would rather know for sure instead of wondering. That's how my mind works! The 27th is going to be a fun day we have to be in JC to see the dentist (for the first time) at 8:30am, so I am hoping he will nap from JC to Kingsport so he's not melting down from just being tired.

He has an OT appointment tomorrow and it will be great going over everything I've come up with over the past two weeks with Mel and get another opinion, guess I'm trying to make sure I'm not just overreacting and making a mountain out of a mole hill, but at the same time I want to make sure that the doctors or I (his primary advocate) don't miss the small things and set him back.

I am still waiting on his hammock, swing, and Lycra sheet, the guy on the phone said someone was supposed to have called and confirmed that I wanted the orange hammock since it's really a peach color. Sooooo I ordered him a royal blue (for Duke!) instead. The guy swears it will be here Thursday. OT is scheduled for 3, so I may go to the post office today and put a hold on tomorrow's mail so I can pick it up and have it ready to use tomorrow afternoon. Guess you could say I want to make sure we know how to use it correctly so he gets the maximum benefit!

Oh and I did locate a link for compression clothes (he despises the weighted vest) that aren't $150 each!!!!! Add a medical word and prices skyrocket. So I did find them for $20. The biggest issue I had trying to locate them was no one had the right size. We looked into rash guard and if it were tight enough on the body it was too small to go over his head! If it fit over his head it was too loose... So the website I shared with Mel allows you to measure your child and have the right shirt sent. Not quite custom fit but pretty darn close!

We tried noise cancelling headphones. They lasted all of..... Wait of it..... 1.25 seconds before they were flung off his head and into the floor while he screamed! We waited until he calmed down and the same thing.... I'm not done, I may attempt headphones with the DVD player in the van (that's been a godsend) he loves watching Bob the Builder and Paw Patrol, so he may wear them so he can hear it, if so maybe just maybe we can use (if I can find some super light weight ones) the noise cancelling for stores. Did I mention HE HATES 100% WITHOUT A DOUBT     ANYTHING.  TOUCHING. HIS.  HEAD....

Saturday, June 11, 2016

Mommy's concerns

So I did a lot of thinking over the past two weeks. A LOT of THINKING and a lot of watching. So finally on Friday at work I brought up the possibility of having Dacotah scheduled to see a behavioral pediatric physician to rule out autism. Call it a gut feeling a hunch.. Crazy thought or what have you. But I have many reasons.

Everyone says he makes great eye contact and he interacts. True, but high functioning autistic kids do both as well.

Everyone says he will keep learning new words: so far for every new word he loses a word. This week he stopped saying no no no and just goes huh uh. A lot!

He doesn't babble: quite honestly looking back over the videos he stopped around 12 months.

He no longer says daddy: he calls us both mommy.

He screams and arches his back to avoid diaper changes or when you attempt to change his clothes. This is not terrible 2s, this is EVERY SINGLE TIME WE CHANGE HIM

M-CHAT-R is an autistic toddler questionnaire that follows up on questions to suggest whether it's toddler normalcy or if it's something to consider. After filling out the report 6months ago and again on Friday the result had no changed and suggested we seek a specialist to rule out ASD.

His attention span with trains is over 5 minutes, and he will play his tablet for a long time we are hoping he will watch enough videos to pick up some signing.

He dislikes humming or singing noises, he hates the vacuum cleaner (despite ours being quieter than most), the radio being on in the car leads to a meltdown. Etc.

He does not and has never slept more than 4 hours at a time before waking up.

Do I feel like a diagnosis is going to solve all our problems at home. No, but by making sure we rule out every possible diagnosis, it allows us to get him the most accurate help so he can advance and continue to make progress. It is my hope to eventually to increase his OT from twice a month to four a month. I don't know if it's possible and we are making progress with what Mel's suggested so far, but in the two weeks since she has been here it feels like he is getting frustrated and melting down a lot more often.

So, I called Bill Côte, NP on Friday and spoke to his nurse, I asked for a referral to their preferred physician for an autism evaluation. There was never a hesitancy in her voice and Bill was standing by her because I heard him talking to her in the background. He gets regular updates on Dacotah's progress and he had concerns at his 18month and 24 month well visit. They are going to send him to see Kristi Cook.

I called the office to make sure she took his insurance and asked the front desk how soon we could get him in once they receive the referral, the lady said it's possible to get him in before the end of the month!

Please understand I have an almost 9 year old, I am not being an over freaked out mommy. I just know that in the sense of normal two year old behavior that Dacotah is not on track, and it's my job as his mommy to figure out how to help him so he can achieve the same milestones as other kids his age.

Wednesday, June 8, 2016

A couple steps back but a few steps forward

Today has been full of crazy.. As everyone was waiting on me to leave Dacotah ran in circles over and over inside the trampoline outside. I had to do some office supply shopping so dad agreed to watch the kids while we went to Kingsport and Johnson City. Dacotah is usually okay with transferring to dads car, but today was meltdown city. Travis took him over to dads car and Dacotah clung to him screaming, crying inconsolably until they pulled out and got on the main road then he was fine. When we met to pick them back up, dad had gotten Montana an ice cream that she was eating on. Really freaking ice cream, in the same vehicle as her brother, knowing full well he could instantly breakout if she accidentally touches him. When confronted dad just said "she wanted an ice cream ". I wanted to jumped and say yep and Dacotah wants to go to the hospital because of a poorly timed decision. However, I just explained I'm over cautious because I don't want to end up with him in the hospital. Soooo...
The drive home, he wanted to nurse and it wasn't a good time with me being stressed out so I tried keeping him occupied with YouTube videos of model trains. Thankfully for the most part it worked! When we got home he watched his train go in circles. I fixed a thing for Montana and came back inside. While Travis and I were watching a show, Dacotah points to different things and the following conversation took place:

Dis...no...dis...no.... Dis.... No.... Dis...no (he carried the two sided conversation on his own) he goes over to the tricycle and I say "that?" He nods yes and got on!

I'm assuming these are good things but I guess too that I worry that it's not normal. I read a lot about SPD and a lot of the younger kids start running in circles, lose their words, and get frustrated and get violent from it.

He hates having his diaper changed or his clothes changed and has started kicking worse and a couple of times he's started to bite!. On a positive he is using his sippy cup more often with less fuss. I'm hoping this weekend to see if we can start substituting it for nighttime since we found 2-3 that he likes chewing and drinking on.

Oh oh oh... I almost forgot. We got his hammock, swing and Sheet made out of Lycra ordered the other day! Cannot wait to get it here so he can enjoy it!

Friday, June 3, 2016

New Speech therapist, a rough trip to the store, and the cat

Dacotah's new speech therapist came on Tuesday. Her name is Katie, and she was super nice. Dacotah interacted with her so much more than he ever did with the other lady. Perhaps, it he felt more safe as she was definitely more calm and played with him. Our focus is trying to get him weaned and onto a sippy cup at night time. So far I haven't tried it as it has been a long week. I think with me having to work a weekend would be better in case we are up for hours trying to get him to take a cup. She is on vacation next week and we aren't sure when she will come back, but she did agree that the visual cue cards of "I want....." would be a great place to start. Interactive play and repeating words to him would be great.

If you are on my facebook page you can skip this part as I posted these earlier this week:

1) Dacotah let us swing him in the Lycra material Mel left for us to use. Best way to describe Lycra is swimsuit material. He's always avoided it and today he didn't want us to stop swinging him. Now to find the link and order him a swing/sheet combo and a hammock made of Lycra..

2) At Aldi's the other day the following took place There is no doubt in my mind about Dacotah's diagnosis. Aldi's always leads to a screaming fit but this time he bent over and plugged both of his ears. When I picked him up and held him tight he calmed back down, I asked if it was too much noise and he nodded yes. Travis asked if he wanted to go to the van and again he nodded yes.

It is my hope that he will soon start sleeping better. Last night (I recorded this on my phone) he went down and slept:

  3 hours 20 mins
  1 hour 28 min
  1 hour 28 min
  1 hour 22 minutes
  1 hour 14 minutes  

So even though it was almost 9 hours, it was interrupted and REM cycle was short if it was at all after the first 3 hours. Which leads to a cranky 2 year old and a super tired mommy. I'm hopeful something soon will give, but others on the sensory page states that their older kids still do not sleep through the night. I hope this is not our case.

Last night we ran to lowes to get replacement parts to the trampoline (I'm hoping to get it together this evening). Dacotah was fine until we stepped inside, as soon as we stop to look at something he will start crying. (I think that at this point because there's no movement he is hearing everything going on around him and it's too much). If daddy puts him in the buggy and pushes him nonstop he does much better until the movement becomes an issue. :(

Frappe our cat and Dacotah are super attached. If the cat isn't in the house Dacotah will stand at the door and will sign for us to come over and then he says "kitty". The cat is super patient with him and has never hissed or clawed at him, but instead stays right by his side when he naps during the day.

Glad the weekend is over

The drive to Grandma and Papaw's house went with only a 5 minute screaming fit. Thankfully I thought only for the rest of the weekend being a total mess. Don't get me wrong we enjoyed our visit but Dacotah's mood has been anything but normal. It's as though we have gone back 4 steps in some areas and up 2 in others. Sunday we headed out to church and it was hit or miss all the way there whether he was calm or crying. Usually he will stay with Ms. Anne in the nursery but she was out that morning. We walked in and the smell of cheese goldfish and cheese doodles was overpowering. I asked the lady if we could put them up and I have safe foods to share. We wiped everything down and sissy stayed with Dacotah (just in case he started reacting). We made it through without a breakout. At one point I went back to check on him and ended up having to stay because every time i would get up to leave, he would meltdown and scream like a banshee. Given his mood we skipped going out to eat after church and opted to get food to fix at the house. He fell asleep and napped maybe 30 minutes waking upon arrival. For lunch he had some corn and a few chips. Travis and I went fishing while Jean and Richard took the kids to the splash pad. Dacotah loves his water table but doesn't care much for the splash pads. I feel like he wants control over where the water hits. Dinner time: he ate French fries and ketchup, and a couple sugar wafers. Call me super paranoid but it scares me and Travis both when we are out and someone else has milk or egg products. I always think in the back of my mind what of someone forgets and touches him with their hands and then we are rushing to the hospital. Honestly I hate seeming like I'm a grouch but when you see your child itching, swelling, and breaking out, I'd take someone getting ticked off at the reminder any day.
The drive back on Sunday was anything but the new normal. He whined and whimpered until we got back to the Virginia state line. From there any and every time the sun shined in through the van he screamed. As soon as the shadows from the mountains covered the sun, he was fine, this went on the entire way home. Sunglasses aren't an option as he refuses to wear them and the screens in the van aren't effective enough for his over sensory. Needless to say we were more than happy to return home.