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.
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