We met with the neurologist. And it went just as I expected. We talked about everything that happen during the pregnancy and up to where we are today. She like ever other one of her docs said the same thing. ” this is not autism… But there is definitely something going on.” We lucked out, because the weather has been so bad this week, They had openings to start testing right away. Great, this will force a melt down. And I mean that in the most sincer form. I never really want Aryn to have a melt down. But there are times where having the doc see what it looks like is a good thing. We explained to Aryn what was going she got her sticker and we went home.
The next day we headed back to the office. The testing is suppose to take about 2 hours. So I brought along my lab top, figuring I could get some work done. I joked to the tester that because I brought it, Aryn would need me there. But honestly I figured because she is so used to doing these kind of things, between speech and behavioral therapy she’d be okay. And for the first hour or so she was. The tester commented on how hard she was trying and she really was focused most of the time. Till it came to the faces. She was done she wanted to stamp, she wanted to do anything that would get her away from those faces. The tester brought her out to me, telling me that she was gonna let Aryn play for 15 mins or so and we’d try again. I snicker a little bit, I think the break was more for her then it was for Aryn. When she came back she asked that I come back with them to help finish the test. Aryn was pretty tired of it, and it was unbelievably hot in the room. So I stripped Aryn down to her top. Sounds silly but when your have a kid with Sensory Issues, being to hot is like having a body part cut off.
For the most part with my help we were able to get through a few more test. They asked her to draw…. ever look at you kid and go you little stinker… that was me. Lil momma can draw. she was able to copy all the shape and shape combinations other then the very complicated shapes. Totally normal for her age. Aryn doesn’t draw much at home. I’ll be working with her more at home. And we both noticed that while she can pick out similar objects she can’t determine size. Don’t know what that means. But it’ll be interesting to find out. she has very good eye sight so I know it’s not that. Then we came back to the faces. Aryn simply refused to do it. she fussed and whined till we had to stop for the day. They happen to have another 2 hour opening and asked that we returned the next day.
Back to the doctor. Can I tell you how much I dreaded having to drive back there. I’d had spend the whole week driving to some kind of doctors appointment each day. Meaning lots of Burger king and McDs breakfasts for us. Since we didn’t have time any one of these mornings to eat a real breakfast. Yucky! We made it back over and surprisingly Aryn didn’t freak out as soon as we got there. Which I fully expected. Her tester came and got us and we started round two. The tester tried to start again with the expression recognition. To which Aryn reacted the same way. simple refusal to do so. Anything that required recognition of expression or emotion was met with steadfast refusal. And lucky us a temper tantrum that lasted just short of an hour. Knowing it was a temper tantrum as much as I got kicked and she screamed in my ear. It was important that she understand this wasn’t going away. Especially since it was Friday and we just couldn’t come back the next day. Couldn’t let her think she had won. Eventally we got her calmed down enough to continue. And with the removal of the faces she did beautifully. I am pretty sure I lost my voice at some point from saying “YAY” and fist bumps and high fives. But re enforcing her efforts was more important. We tried the faces one more time and it just wasn’t gonna happen.
The good thing.. it’s done.. the bad thing.. They have to count the whole face portion as wrong. She did note that Aryn didn’t do it. But it might mess up the scores. Hopefully not to much that we can’t get a clear view of what is going on with her. I’m just glad it’s over. I don’t think either one of our butts left the couch when we got home on Friday. And I owe one little girl her mickey mouse pan cakes she’s been asking for all week. We’ll go back in February to do some observation and go over the results of all the testing. At least I know that she’ll be okay with that. Nice to know we’re closer to an answer.
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.
So I forgot to tag the last post… “Aryn has what?!” But the short version Aryn had the measles week before last. And let me tell you it sucked. But we managed to make it though. Not without some scary times. Mostly the perfect storm of scary. We live in Indiana. If you’re from the Mid West or watch the news. ( I don’t know if it made national news). Last Sunday our state was assaulted by Tornadoes. Some way some how, our town was spared. But there are other areas who either where hit by tornadoes, or line winds that just destroyed whole towns. My heart goes out to all of those whom are rebuilding when they should be prepping for thanks giving and the holidays.
Our personal little horror came in the form of a 103.3 fever just as the storm was getting ready to hit us. Can I get a Amen for Tylenol. Nothing like thinking you’re about to get hit by a tornado and discussing with your husband if you can make it to the Local Er if need be, incase it doesn’t go down. luckily it did and she was blissfully asleep when the tornado alarms went off. And since she’s never allowed in the basement. She didn’t really mind being whisked down into the basement.
Other then that Aryn has been doing pretty well. While her diet is still limited she’s been eating a lot better these days. 2 meals a day is becoming the norm and three some days. The last two day care days have gone off without a hitch. We did have one big melt down at bath time yesterday, brought on by just plan tiredness. We’re still waiting on the Nero doc to see here. Since we’re in a small town it might take a bit. But I feel like we’re finally getting some where getting some answers and moving forward.
As I am sure most special needs mommas can relate. There are times things get very busy and it seems there isn’t enough hours in the day. But some how we manage to get it all done. Last week was one of those weeks.
When you have a child with sensory issues every day decisions become a lot harder. Due to the all the driving I now have to do, since we’ve now added two to three days of day care a week ( more on that later) has forced me to buy a new car. I loved my pathfinder, but my pocket book didn’t. Side note if you need a good suv.. go for the older model pathfinders, their awesome if you don’t need to do a lot of city driving. But back to the car. I was spending 60 dollars a week in gas. My husband and I came to the decision that I had to get rid of it and get something that got better gas mileage. It had to happen right now. We couldn’t wait. But when you have a sensory child it gets harder. Would Aryn like the new car? how long would it take for her to adjust? Is she gonna miss the sun roof that the old one had. It has to be comfortable, it has to be warm, since we live in a area where it snows, I have to be able to see her so I can speak to her. Lucky for me Aryn was very happy with the new car, And since I couldn’t put her in the middle like she’s rode since the day she was born, I thought she’d have a melt down. But the new found freedom of being able to look at the window has been the best thing ever for her. When I went to finish the paperwork the old pathfinder was still parked out front and she told me it’s Aryn’s car. So I had to explain that it wasn’t our car anymore. Our new car was our car. I think she’s finnally accepted that the new car is ours. And I wont lie. Having a nice sedan has been awesome. I forgot how nice they were and comfy. I am very very happy and it seems the rest of the family is too. =)
Back to Aryn and day care. Aryn started daycare back in September. Partly because I needed to be able to go to doctors appointments and not drag her along and partly because there are no kids her age in the neighborhood. She needed the interaction she’ll be starting preschool next year and needed to get use to how that all works. We were very lucky to find an in home daycare that is certified. But it was on the other side of town. But when it comes to your kids you do what is best for them. Miss Amy is amazing and has deal with many kids with special needs. She adores Aryn and Aryn loves being there. Well after I can convince her to go in the morning.
The thing with Aryn unlike most sensory kids ( that’s what I am calling it now) is she appears very normal a lot of the time. I hope I don’t offend but it’s important understand the next part of this. Since her speech issues are mostly hearing related and she never really regressed it just took her a bit to catch up, it doesn’t fit the mold. It comes as quiet a shock when she does those sensory behaviors. Those things that make people stare at you and wonder what is wrong with your kid. Those things that just break your heart because you know she can’t control it. The food issue is a big one. When Aryn started daycare she refused to eat anything at daycare. Nothing I brought nada. She’d happly drink her milk. It took a good month to just get her to eat cereal. But when you’re not use to seeing that, the food strikes because things changed it’s really concerning. Hell I hate it too, but I know it’s part of what’s going on and I can’t force the issue. I can only make sure she gets enough of what she needs during the day and move on. Or when she has a total melt down, it’s important we watch her so she doesn’t hurt herself. she’s not violent but she gets so upset she doesn’t pay attention and runs into things or throws herself down. And those melt downs require some one to hold her till she’s calm no matter how much she resist it.
But happily she’s adjusting well to daycare. It’s help her speech so much more then her speaking with us adults. In the past few weeks she’s become easier to understand. she seems much calmer the days she’s home. And she even told me the other day about how the kids had Chicken nuggets. She didn’t eat them but she told me about it. So there is hope eventually she’ll start eating with the rest of the kids at daycare. Amy and I believe it’s just to much sensory stimulus going on during lunch that she just can’t deal with it. So she eats her lunch I bring her while the other kids are napping and then sleeps on the couch while the other kid sleep in the day care area. It’s not perfect but it works. Some days we have a wonderful transition to the car some times not so much. But when we can’t leave daycare without a fuss it’s a big celebration. I hate having to leave her there till 5. Since most days I don’t really need that much time. But with sensory kids schedules are very important. I am so happy with the progress she’s made. We still have good days and bad days. But the good days are getting a lot more Awesome. Hearing her talk more is pretty much the best thing ever.