Saturday, December 3, 2016

Sick, Sick, Sick

November 27-Rory is still sick from yesterday. I've been mostly taking care of him. He only wants to be held while I walk around. He won't settle for sitting and rocking in a chair like usual. No, he has to be held and walked. 

November 28-Rory is very ill. If he doesn't keep fluids down we may have to go to the ER. This is the sickest he's ever been, poor guy. 

November 29- Today was Char's and Heidi Anne's turn to be super sick. I believe they caught it from little Rory, who has finally stopped throwing up. I feel like this post is starting to look like the diary in the old Oregon Trail game. "Charlie has dysentery". Remember getting to play that game at school if you were good? Or having it at home on your computer on CD if you were really lucky? (Side Note-I got that game for my birthday last year, call it 90's nostalgia. But it won't function on these new computers. Go figure).  

Rory had his first of three evaluations for autism this afternoon. I really liked his psychologist, she was very nice. Rory had a bad day and was way out of his comfort zone. The psychologist caught some things we had over looked. 

For example, he likes to get on my lap and make me clap my hands, which he did during the session. (Every time he does it I think of the song "I Can Make Your Hands Clap"). Apparently, it's a form of stimming. Stimming is a way to help manage control over fear, anxiety, or from being over stimulated.

She saw his "nothing shall remain on a flat surface" rule. Rory did his shoes can only be on the right foot as well. Both of which she attributed to his personal autism quirks. Also, he did his drunken sailor on land, side to side walk. Which she said is a sensory overload thing. 

By the end of the session the psychologist wrote "Autism" in big red letters across his paper work. She then said, "Yes, he does have autism, now we need to find out how severe he is". The psychologist believes he's mild, but being non-verbal may push him to moderate. She's going to see if we can be fast tracked so he can start ABA therapy right away. She suggested we give PECS therapy a try. Which is a form of speech therapy. 

November 30-Well, everyone is still on the mends but no one stayed home from work or school today, I call that progress. 

Today Anastasia had physical therapy. She is doing great! I've noticed that Anastasia is improving and progressing well when it comes to her upper body, but her lower body is lacking. She has started to army crawl, dragging her legs limply behind her, (like a beached mermaid). The therapist gave me some stretches to help strengthen her legs and back. She advised me to keep pushing her to sit up in the bumbo more. 
 Shortly after that Rory's language therapist came over. He still won't talk for her or make any sounds. But he did interact with her more this week! They played a game where he had to open a wipe container, put in a card, then close the lid, and repeat. He loved it. 

He sat still long enough for her to read a story to him. Then she brought out a sensory bouncy ball for him to keep, which was very nice of her. He loved playing with the ball. We talked about maybe trying the PEC System with Rory, she's going to talk with her supervisor about it. 
Here's a picture of Rory playing with his busy box. It has objects that light up, different types of switches that make that "click" sound, wheels for him to spin, a phone for him to play with, and lots of doors with different types of locks for him to open and close to his little heart's content. 

Later, a nurse came by to weigh Anastasia. She weighed 14 pounds and 4 ounces. Meaning, no weight was gained in the last 10 days. But she didn't lose any. We'll see next week if she gains anything.    

Tonight a lady from our church came to visit me. Heidi Anne asked if she was here for Anastasia or Rory. You should have seen the look on her face when I said the lady was here to visit with me.

December 1- How do I feel about getting a diagnoses? I feel a sense of relief. I've accepted that it's autism (we just need to have the evaluation to find out where Rory lands on the spectrum). I could be in denial, but that would waste precious time. I think I may have been in denial when he was 16 months old, and that delayed the help we needed. Bargaining is useless and again would just waste time. I think things slowly built up for me that something was off. I just didn't have a name for it. 

I guess I could be angry. I never really thought about that one. Grrr, Anger, Arggg! Nope, not me. 
I want him to have friends, though it may take years for him to develop those skills. I want to be able to go out in public without him suffering a meltdown. I'd like to be invited to gatherings (so I know people still want us around) but with the understanding we might not be able to make it based on Rory's day / mood. Or if we can come, I'll be focused on Rory so much (plus watching the girls) I might not be a social butterfly. But happy to be around. 
There is one thing I want, acceptance from others. Acceptance of his diagnoses, of Rory, and even his little quirks. I want him to be treated like any other 2 year old, but with some extra understanding of his unique needs. I don't want him to be treated like a freak, slow, or someone to be feared. While yes, he's delayed now, he may not be in a few years time.

December 2-Rory is still sick but I think he's turning a corner! He kept down the Pedilite mixed with a bit of Sprite. The nurse told me that as long as he had tears he wasn't that dehydrated. Despite him only having 3 wet diapers 2 days in a row. (Shaking head and sighing). 

He even ate a little bit today, which stayed inside his tummy. Rory started getting that spark in his eye just before bed. He gave me a tiny giggle with a smile. But he was still super cuddly, which is abnormal for him. We'll see tomorrow how clingy he is. 

What a week!