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.
I was finally able to make it down to the school district this week. And as much as this school district makes me want to tear my hair out, I have to give credit where credit is due. I was able to speak with the resource director, and she even push back an appointment to speak to me. Which impressed me quiet a bit. We sat and talked and I explained Aryn’s situation and how I felt that she wouldn’t be ready to go into a normal Pre K classroom. After filling out an assessment with her, it was decided that we’d go with developmental delays. The speech delay she has will more then likely be enough to get her into the special needs preschool. But the director felt that going with a developmental delay DX would work out in her favor and grant her access to all the services the district has.
I know once they reach school age the schools are suppose to take over the therapies. But in Aryn’s case I feel as long as our insurance pays for it, she’d be better over sticking with The therapist she has now. I have a feeling I might have to fight with them on this. I don’t want the progress she has made with Dana go down the drain because of Speech therapy done by the school. But I suppose that is a bridge we’ll cross when we get to it. In a few weeks we’ll begin the process of all the evals with the school district to see where she is at and what services the district wants to provide her. It’s kind of scary to think she’ll be in Pre K next year. But at least now I feel like she’ll be able to attend school and still have her needs met.
Her nero appointment is Wednesday, I hope and pray the doctor will be able to give her a DX once and for all. So we can move forward in the best way possible for her. I hope the new year is treating everyone well.
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.