Monthly Archives: January 2014

Neuro.. When momma looses her mind.

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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.

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Pre K is just around the corner.

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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.

The Great White Death ( the big ass snow storm)

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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.

Celebrities and Autism

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Another good read.

Simple. I Just Do.

Jenny McCarthy was all over social media this weekend, because somebody reprinted an old interview, and everyone had something to say about it.  I haven’t touched this issue on this blog, and I call it an “issue” because just the mention of Jenny McCarthy divides people in the autism community into very disparate camps.  I’ve said before that I think this kind of division can not only hurt our kids, but also any progress we are making in enlightening society, and changing the world for our kiddos.

And truthfully, celebrities can say whatever they choose, not because it’s a first amendment right (because that is not what the first amendment is actually about), but because media and all of society expect them to have something to say on everything, and even if they don’t seek it out (although I’m pretty sure Ms. McCarthy did), sometimes they are pushed to…

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Confusion about gluten-free

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good info here. We don’t do Gluten free but we do try to avoid it.

The Mom Odyssey

thIt is interesting to me as to me that with so much information out there about going gluten-free that there is still so much confusion about it. Then again it shouldn’t surprise me because there’s even more information out there about processed foods, MSG’s and fast food yet it mostly gets ignored.

Last year around the beginning of April we cut out gluten. Within two weeks Jimmi dropped about 15 pounds and I dropped a few. Not only that but Jimmi’s previous digestive issues were practically gone. My Dad and step-mom went through the same thing. Actually, that’s the whole reason this blog was started. When I found out in June I was pregnant, being that I was tired all the time and throwing up all the time, we kind of resorted to our old eating habits. I’m 35 weeks pregnant now and we’re just now slowly coming out of…

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A couple of things I came by today that I want to pass along.

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I came across these during my wondering on face book.  Interesting and eye opening.

http://sheridacon.com/2013/12/17/unique-grief-special-needs-parents/

http://tdalexander.hubpages.com/hub/Autism-and-the-Senses-What-is-Sensory-Integration-Disorder-and-How-do-People-on-the-Spectrum-Cope-with-It

Take some time to read over and share if you see fit.

Hello 2014!

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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.

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