So I took a longer then exspected absence from the blog. If you live anywhere around the Midwest.. or just about anywhere other then California. you know we had a really bad winter. Heck it snowed to day. Between finishing up the Nero testing and having to become every one’s taxi I’ve had very little time to do anything else.
We did manage to finish the testing the end of February. Unfortunately we’re still in the same boat we were before. The only thing we did manage to figure out once and for all is Aryn in no shape or form is autistic she isn’t even on the spectrum. Which we already knew. But now it’s been confirmed. The best they could offer us is global delays with SPD not related to Autism. We will be meeting with them again in a few months to see how she is doing. But the doctor was very impressed with the improvements she has made since starting Speech and Behavioral therapies. It’s likely with this continuing she’ll get to a point will she will no longer be behind her peers. They said she was very bright ( duh). Considering Matt, Jayde ( our oldest) and I are all gifted, I can’t say I was shocked at all. I’ve always said that she’s just as smart as Jayde if not more so she just can’t get it out.
Feeding issues have been bad lately which means sleep has been too. There have been more then a few nights I’ve had to man the baby monitor till she finally crashed out for the night. I am really hopping we can get to the bottom of this feeding issue. I fear that she’ll end up with a feeding tube or a totally liquid diet. But there is very little I can do about it now.
The most fustrating thing about all of this. The school district wants to redo every test we just did, so they can place her in a Pre K classroom and develop a IEP and 504 for her. Normally I wouldn’t care so much but we just went through so much to get all this testing done to have to do it all over again with new people makes me want to pull my hair out. On top of that they want to take over her speech therapy. I have a feeling this is gonna be a big fight with them. I don’t see removing her from a doc she’s use to and have improved greatly with as a good thing. Especially since we are very lucky to have insurance to cover that. So I guess we’ll see how that plays out.
I promise next post wont be such a info dump.
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.
There are a few things that you can just smile and say… yep. We usually put the tree up pretty early. Because honestly this is one of the busiest and stressful times in our house. I usually take most of December off of work for this reason. ( some times being self employed is awesome). But back to the point. Aryn help me put the decorations on the three and over the past week I started to notice they were migrating leaving us with this. I couldn’t help but smile.
One of Aryn’s more Autistic behaviors is the grouping and sorting of objects. And yes I have not plans to move them. I am pretty sure she’d moved it back anyways.
This weekend was also Aryn’s 4th birthday. I can’t even believe that she’s been on this earth for 4 years now. I can say we are in a much different place then we were last year. So much has gotten better and so much has changed. And one of the major things that has changed was with me. When Aryn was very very small. I always worried that she wasn’t meant for this world, I was always fearful we would loose her. No doubt brought on on a very late miscarriage of the girls brother the year before I got pregnant with her. There wasn’t a day in that pregnancy that I didn’t worry we might loose her. I can’t even tell you the last time I felt that fearful, She’s hear and she’s healthy and she’s all ours. The future is bright and we’re moving forward to make life better for her. I am sure my post will be limited till the new year. It’s the holidays and we’ll have family coming in. Enjoy your kiddos and the magic of the season color coordinated and all.
Man… really it’s almost Christmas… when did that happen? In a one short week Aryn will be 4 years old. I remember when she was born, Jayde our oldest who was only 10 at the time told me it wasn’t fair that she’d get birthday and Christmas gifts. I had to explain to her the real bummer of having a December birthday, I know there are those who know my pain. I am a January baby myself and people still forget my birthday because it’s so close to the holidays. Still it’s crazy to think it’s been 4 years since we brought this beautiful baby girl home.
I am so very very excited for Christmas, my mother in law will be here. She makes a trip out two times a year to see us and the girls. Aryn was doing a lot better the last time she was here. But now OMG I think she’ll be floored to see how much better Aryn is talking. Even if that came with the sudden ability to whine. *hangs head*. I could of lived without the whining I really could of. Aryn just learned to say grandma after she had left last time. The closer we get to her birthday and Christmas she asks me where is grandma. Or grandma needs to come home. To which I have to explain that grandma’s home is in California. But still its so very cute. I just can’t wait for grandma to hear her talk. Plus we really love having family out for the holidays. Being military and Matthew job being as such it’s really hard to take a vacation we only make it home about every three years. So having family come out is the closest to home we get. It gives us a little bit of normal in our very crazy life. Plus it allows Matthew and I a chance to take a mini vacation when they are here.
In other news =/ Aryn has her first ear infection. A complication from her measles a few weeks back. Aryn has never had a ear infection in her life. It was so very very scary how sick and how fast she got sick from it. Even her doctor was shocked how out of it she was when I brought her in. Even more so when he found nothing wrong but a very very minor ear infection in her right ear. The really bad thing about this, she’s not sleeping well. We were doing so good with sleep. But it’s understandable, it’s hard to sleep when you’re so uncomfortable. It’ll take time and antibiotics to kick this. I’m praying this is an isolated indecent, because I hard horrible and recurring ear infections well into my adult years. I was 30 the last time I had an ear infection, and has left me with some hearing loss. We got very lucky with Jayde and hopefully Aryn will be the same.
I hope the holidays find everyone well. And we all survive… LOL… since this can be a really hard time for our SPD kiddos.
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.