Now that everyone is done freezing their asses off. We’re on the other side of one of the coldest snow storms of us have seen in our life time. This just confirms I don’t ever want to live in Alaska. =D Great thing was we didn’t loos power once. We were very very worried, we have a breaker that for some reason likes to pop every time it gets cold. I guess it got so cold it couldn’t pop. The girls did well. My oldest is so sick of being home. 3 week winter break isn’t as fun as it seems. Aryn has been doing very well all things considering. She was pretty upset about having to miss speech therapy and day care. She asked me today if we could take a car ride. Which we can’t. We’re still snowed in. My husband has been having to work from home. His boss was able to get him today and hopefully they will return with a snow blower. Since i had surgery the day after x-mas I can’t shovel snow. And trust me it kills me to have to send my husband and my oldest out into the cold to work on the 2 plus feet of snow that has collected around the house.
Her Nero appointment was pushed back to the 15th. This is really the final step in getting her a formal diagnoses. Once we have that we can move forward with Pre K and kindergarten with the right plans in place to help her succeed. 504’s and IEP’s are critical for success with any kid of learning disability. My oldest had one in the very early years of her education. While it might not be the case for everyone. It allowed her the time to catch up on the things she was behind in. Now she’s able to attend school without one. When she does have issues she is able to asked the teacher for what she needs. She still have some issues with test taking and her teachers have been wonderful about giving her a quiet place alone to work on a test when she needs to. She’s learning to deal with her ADHD in the real world. I don’t know what the future holds for Aryn. But I will do my best to provide her with everything she needs to do her best in what ever she decides.
It was the week that would never end…. Well maybe not but god it felt that way. Some how in all the hussle and bussle of December we had managed to jam pack a week. There hasn’t been a day this week that we’ve hit home before 8 pm. On top of that due to the weather I was having to drive my husband in to work most of the week as well. As a parent with some one with sensory issues you can only imagine the horror I felt when I realized what I had done. Add to that, that I myself have ADHD that to this day I have to take medication to manage it, and my older girl as well, it was a recipe for disaster. But Aryn believe it or not did wonderfully. Much better then I could of ever hoped for. She really loved taking daddy to work. She manage for the most part to not have any major issues. Her back to back therapy days were awesome. Which let me tell you is helping me out a lot. To knock out Speech and Behavioral therapy in the same day has been a god sent.
I am very proud of Aryn. The first of two concerts we had to attend was on Tuesday. It get’s very loud in the gym. Something I complain about constantly, when it comes to her school. They never have enough room and the room it’s self is just to small for a any kind of performance. Orchestra The one we attended on Tuesday wasn’t bad at all. I am sure it had to do with the lack of percussionist trying to blow everyone’s ear drums out. But still it was a little to loud for Aryn. And instead of going into a full blown melt down she told me very calmly that it was to loud. We sat out the rest of the concert in the hallway. She got to see sister play so she was happy. Today was Jayde’s band concert. Aryn did very well before hand. Talking with the lady whom had sat next to us. Which was awesome to see, normally people usually have to talk to her. But she initiated the conversation herself and was actually talking with the women. But remember how I mentioned the room being way to small. Well Band is much bigger which ment a lot more families and parents. I had taken Aryn into the hallway, not because she was having any issues, but because one there was a couple one of which was on crutched needed seats on the ground floor for lack of a better word, and two I knew Aryn wasn’t gonna make it this night without a few melt downs. I made the decision it was best to go out into the hall instead of having to get out of there quick in case she did have a melt down. I was able to rotate with another set of parents. ( Matthew had to work and miss both concerts.) So I we could just watch Jayde play at least one song. And that’s where it began.
Moving through the crowd set her off. like most parents of Aspies or ASD or SPD There are things you do that you know are just gonna work. For Aryn it’s sitting on the floor cross legged and holding her. Talking to her and doing my best to calm her. The first comment didn’t bother me so much. Another parent made mention to how well she had been doing the other day. After a quick explanation about how long the rest of the week was she smiled at Aryn and that was that. The second melt down though. That was something else. I needed to put Aryn’s coat on, and all she wanted to do was get outside and away from all the commotion and of course she flipped out and threw herself on the floor. So of course I had to grab her or risk her being trampled by all the other people trying to get out the door. I was able to duck into the stair case and do my thing.. another parent looks at her like she’s crazy and asked me if she is okay. I tell her that Aryn has sensory issues and she just needed a min or two to calm down. The look I got… I mean seriously. Do you think I wanted to sit down on the ground while people are passing by and my poor older daughter is freezing her tush off because she’s in her dress and it’s the dead of winter here. Of course not. But it’s what Aryn needed in the moment so I did it. There is a million other times I’ve had to the the same in public places and I’ll do it over and over again for her as long as she needs me too. But It just made my blood boil. Aryn had done so well this week and even with the two melt downs she did very very well tonight. I didn’t want to take away from what a wonderful week she had just because she had reached her limit. She loves hearing sister play and I will accommodate that as much as possible for her. Normally I have my husband with me and We’re able to deal with these moments out of the public very. But tonight I was only my own with lil Momma and a camera trying to get some shots of the concerts their daddy had to miss.
I think I am done ranting. =D
Gonna add in a Sensory kiddo life hack here.
If your kiddo has issues with blow drying hair. Something that is nessary during the winter months here. Get a small heater with a fan. sit it on a raised surface. And there you go safe blow drying. it does take a bit longer. but it’s much better then having to use a blow dryer on her. I think Aryn does so well with it because it’s been in her room since the first winter we were here. Our house is very old and the heat doesn’t work as well as it should. She’s used to the noise it makes. Which might mean you’ll have to familiarize your little ones to the heater before you start trying to use it as a blow dryer.. SDP life hack
Frustrating to say the least. DMS-5 now includes Social (pragmatic) communication disorder. Finally there is a word something to point to and say… Yes this is it. A diagnosis that finally makes sense for those children whom like Aryn don’t really fit the Autism diagnosis. But the issue is that many in the community don’t want to see it for what it is. Be it fear of loosing services or having to learn a new diagnosis. Like many things nero and psychiatric related symptoms over lap, mimic each other. While a child can very well be autistic and have SPD, it can also be the only issue a child has. Don’t misunderstand. I have no issue with a autism diagnosis for Aryn if that was what she had. But we’ve been through this 3 times now. Every time came to the same conclusion, she’s not autistic. Close enough isn’t gonna cut it. When there is something that explains exactly what is going on. But there are professionals out there that are good with close enough. Well it’s like autism so eh lump it in there. But that’s not good enough Children will not get the care and support they need, because close enough leaves a lot a room for error.
For example. Let’s look at ADHD. I am 33 years old and I have ADHD. ADHD like Autism has become the catch all for a lot of disorders and issues. The biggest difference is that ADHD ( real ADHD) can only be treated two ways. Medication and therapy to learn how to manage ADHD. It’s a neurological defect, plan and simple. My brain is not wired like a nerotypical person’s is. my medication allows my brain to function the way it needs to be. And because so many things get lumped in with ADHD when those “treatments” work, they work because it’s not ADHD. Which is great. Because ADHD never goes away. We just get better at dealing with what it does to us. But because the treatment involves the use of stimulants people freak out. No one questions an autism diagnosis, 1 in 50 kids supposedly have it. Maybe if the treatment was more controversial like it is in ADHD more people would fight to find out the truth and seek to find answers, instead of just accepting close enough.
I am going on a rant here. But the point is close enough isn’t gonna cut it. And I am so glad that she’s being treated by wonderful doctors that arn’t willing to take close enough either. They will fight to get her the right diagnosis and the best treatment for her.