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.
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.
I promise I didn’t fall of the face of the earth. Though there were a few times I wish I had. The holidays are saftly behind us and Grandma is on her way back to California. which by the way is about 70 right now.
Let me start off by saying how unbelievably greatful I am to my Mother in law for coming out this winter. One because both of my parents passed away long before Jayde and Aryn were born. Matt’s parents are the only grandparents my girls have ever known. And it means a lot to us that his mom makes the trip two times a year to see us and the girls. It’s a pretty crappy trip from Cali to here, with lots of layovers. It take just a whole day of flying to get here. Plus it’s a little bit of home for us, when we live so far away. It does make me terribily home sick. But I love having her here. But most importantly I had surgery on the 26th and she was a big big help. Matt still had to work while she was here. Something that can’t be avoided and without her help I don’t know what I would of done. She was able to keep the house running while I recovered. And trust me if you’re a SAHM you know that without you the whole house would fall to pieces.
We did have a lot of Sensory melt downs. Which was to be expected because Aryn’s whole scheduled was thrown out the window. Only one that really was so bad that it took a lot of help from me to stop. Poor Aryn started to get sick on Christmas and by the time I was able to function on the 26th she was in full blown snot rocket mode. Which ment Myself and my mother in law having to take her to the doc the day after surgery. The doc claim she had a cold, but her cough was horribly croupy. I have a feeling it is more like a UPI or perhaps bronchitis. She’s doing much better now but still so very worn out most days. So my poor MIL was not only taking care of me most days but her as well. But what’s winter vacation without at least one kiddo being sick. Matt’s mother was so very surprised and happy to hear and see how much better Aryn was doing. The last time she was out here, Aryn was barely talking or interacting with everyone. This time around she was able to see how far Aryn had come and got to really hear her talk and see her play like a “normal” kiddo. My MIL is a Early Childhood educator, she runs one of the best preschools and Pre K programs back in Cali. My youngest was very lucky to go there, and I wish we were home so Aryn could do the same. So she’s very helpful when it comes to these kind of issues and things to help Aryn do better. I wont lie I am in for a horrible week with Aryn. Once she realizes grandma is gone and wont see her till next summer.
To add to that we have winter storm Hercules Baring down on us, and it looks like we’ll be getting up to a half foot of snow maybe more. We already have at least 5 inchs of snow on the ground from the storm we got yesterday. And as luck would have it. After the storm it is likely we wont see anything over zero with wind chills down to -40 at some point. Jayde my oldest is suppose to head back to school on monday and to be honest I am considering letting her stay home till the cold snap is over. I am sure you are thinking to yourself, surely they would delay or cancel school, but you would be wrong. Because our district is mostly people who live in the city it’s very rare that we get snow days or delays. Even if it’s very cold or snowy or foggy. This bothers me on so many levels but mostly because we have so many kids whom are impoverished in our district that may not have the proper gear to even stand out in the weather for the whole 10 mins it takes to wait for the bus. Especially because the sun doesn’t come up to well after they are picked up. I think I am gonna cancel speech as well for Aryn. Since Tuesday is gonna be the coldest of the days. I really don’t like the idea of bringing her out into the cold like that. As important as therapies are, some things are just not worth the risk.
This also brings into question Aryn’s Nero appointment on Tuesday. I hate for her to miss it especially since it’s gonna be at least a month before we could get her in again. But like I said before I don’t know if it’s worth the risk to bring her out in that kind of cold. The last thing I need to do is subject her to the possibity of Hypothermia just for a answer to a question that could wait a little bit longer. There are a lot of phone calls in my future, concerning making decisions on weather or not she’ll be attending anything this week.
I hope you all are doing well and staying warm.
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
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.