FIGHT!!

Well, today is the day that Aeryn's hair can not wait ONE MORE DAY before it has to be washed. Of course, she HATES getting her hair washed and combed out. I don't know what to do to desensitize her from this because her hair HAS to be combed regularly. 

If you have ANY ideas or any pointers... HELP!!! 

HEART ATTACK!!!

This morning started out like any other day. I wake up, get dressed, wake the twins, get them dressed... you know.

Things took a COMPLETELY wrong turn after I dropped the twins off at the daycare. I walked across the street to the mailbox to drop off a netflix movie and walked back to the bus stop. The bus stop is DIRECTLY in front of the daycare. (busy street, bus stop,huge wall, parking lot, daycare door)

I sit down at the bus stop and put my headphones in as I prepare for my "relaxing" ride to work. I turn on my music on blast because I'm trying to remove EVERYTHING from my thoughts. Suddenly I hear screaming! An ADULT WOMAN screaming!! It's coming from behind me. All I could think was "she has to be screaming really loudly if I can hear her over this music.". So I turn so see what the commotion is and all I see is AERYN RUNNING FULL SPEED TOWARD THE BUSY STREET! My heart STOPPED but my body lurched into action. It was like I was holding my breath and EVERYTHING was moving in slow motion (until my fingertips touched her arm).

The lady was about to pass out (from running AND panic), I was about to call off work (because I was so frazzled), and Aeryn was just fine. SCARED THE CRAP OUT OF ME! In the (almost) 2 years that Aeryn has been going to this daycare, she has NEVER EVER EVER EVER EVER EVER EVER touched the door to go out without permission!!! I don't know WHAT happened today but I hope it NEVER happens again.

While I was at work, as if I wasn't feeling bad enough, I get a call from the daycare. I didnt see the call but there was a voicemail. My heart AGAIN hit the floor at the thought of the daycare even calling. The message is from the new director (I SO MISS KIM!!!!) basically informing me that Aeryn is no longer allowed at the daycare before 8:30 am because her teacher doesn't come in until around that time and that we need to have a talk in the morning. WOW! You let my child run out of the daycare while you are standing right by the door and now its HER fault? REALLY??? **grumble grumble groan groan**

I will be SO grateful when school starts back on August 8th. Aeryn will be entering full day kindergarten and if the bus is anything like it was last year, we wont need daycare at all.

Thanks for reading...

Let the madness begin!

So, today is the first weekday back after school ends for summer break. **insert extremely sarcastic undertone** yay...

Aeryn absolutely REFUSES to go to the daycare even with the phone. I didn't send her with the back pack because I was afraid she would spazz out around time for the bus to come (around 12:30pm). Guess I'll have to try it tomorrow since I have to be at work and dont have time for the drama.

WHY IS THERE ALWAYS SOMETHING??

There should be SOMEplace that I can send her for the summer. She didnt "qualify" for the summer program at the school so now its just daycare until August. I have have to find SOMETHING to entice her to go!

Well, you all enjoy your day while I figure this out.

(I wish for a simple life)

Pool fun due to missed appt

posted from Bloggeroid

**rolls eyes**

SOOOOOO... The transportation guy finally showed up at 3pm. FOR WHAT? Her appointment was at 2pm. This is her first missed therapy session that was not the THERAPISTS fault. I feel horrible even though it wasnt my fault.

Even though she missed therapy, and I was frustrated that she missed therapy, we still had a decent afternoon.

WE WENT SWIMMING!! LOL

Here we go a-FREAKING-gain!

Things were going SO well with the therapy transportation TO the therapist. It was coming home that we were having the problems. Well, today has ended THAT streak. GRRRRRRRRRRRRRRRRRR!!!!

It is 1:40 and there has been no one sent out to pick us up. Her appointment is across town at 2. We are going to be SO late because they NEVER show up on time. I can't even cancel the dang appointment because it will throw her "schedule" all off to not go.

Talk about a no win situation. **rolls eyes** They had better hurrup!

I'm done ranting.

At 5:30am... Really?

We've both been up since about 5. Just laying here quietly in my bed. She gets up storms off to MY bathroom and just stays there. Any longer than 5-10 mins and something is wrong. We were pushing the 10 min mark when I got up and went to see what she was so quietly doing.

GROSS! Shes on her knees in front of the toilet like she's puking... only she's not puking. She's just looking in it. My initial thought was that she was playing in it but her hands were dry. What the what is she doing? I.dont know. But there was poop on her leg, her foot, her panties, AND MY FLOOR (well the bath mat)!!

She was immediately banished to the shower (where she remains playing in the water). As for the other things... OUTSIDE IN THE GARBAGE!

I just hope this isnt setting the tone for the rest of my day. "Shitty" days are NOT whats up. LOL!

Gotta wake the other hoodlums. TTYL!

posted from Bloggeroid

Sleeping habits

I'm kinda grateful that Aeryn has started going to bed before midnight but I'm not sure of how I feel about her going to bed at 6:45pm.

I guess I should go to be too because I know she will be up around 3 am trying to watch tv or eat something.

**deep sigh**

The joy or mothering an autistic child. There is NEVER a dull moment.

Sick kid

I really wish they'd invent all medicines that autistic children need IN A PATCH or nasal spray! I cant get her to take anything. I end up wearing it all. Ive tried thin strips, chewables, fast melts, liquids, open capsules in EVERYTHING nothing works! I can fight a fever but nothing else. Oh and she doesnt mind her nasal spray. Thank goodness for Feverall suppositories. No I dont like shoving things up her butt but it works!

Any insight or ideas are welcomed!

posted from Bloggeroid

posted from Bloggeroid

TODAY IS WEDNESDAY!!

I know it has been a while but I ran out of things to talk about AND my Blogger app on my phone has been out of sorts lately.

Ok, this rant goes back pretty far (to the beginning of the communication device escapade).

Aeryn's DDD worker was supposed to have mailed me out a packet to fill out in order to get her evaluated for the device. She never did. I emailed her this past Friday and asked what ever happened to the information I requested and she was "shocked and apologetic" that I hadn't received it yet. WOMAN! YOU NEVER MAILED IT! She then asks me when she can come out and bring it to me so that we can fill it out together. I tell her that ANY time on Wednesday would work fine for me because I have the day off from work and no other appointments scheduled. End of discussion...

YESTERDAY (Tuesday) I come home and there are some papers rolled up and stuck beside my door knob. I open them and have NO clue what they are or what they are for or who left them. I read through them about 4 times before it hit me that they were the papers for the device. O_o ON TUESDAY??

So I email her AGAIN and ask if she is still planning to come out today (Wednesday) to show me what to do even though she dropped the paperwork off yesterday (Tuesday). She just proceeds to explain to me what to do through email as if I was the one in the wrong. Of course, me being me, I sent the email as just a reply from her last email where we made the arrangement for Wednesday so she could see it. Yes, I'm mean but don't try to make ME look unorganized and unaccountable!

Now of course you can't sense a tone via email (according to some people) but I CAN! If you usually respond to be in detailed sentences and now all or a sudden your sentences are short and hollow, you have SOME kind of issue. LOL!

Anywho... Today is Wednesday and I'm sitting here looking crazy with nothing to do because I shifted EVERYTHING around to have today free to meet with her. Guess I'll go make me some breakfast, make my bed, shower, and RELAX (something I never get to do) while watching The Whole Nine Yards. I may watch My Girl too because I want to see the part when she starts her cycle and flips out and screams that she is hemorrhaging! I LOVE THAT PART!! I feel like that too, Veda!

Talk to you all later!

Today is the Day!

Good day everyone! Today is the day to wear your blue in support of World Autism Awareness day! YAY!! We have our blue! Everyone in my household has on blue shirts today and my fingernails and toenails are polished blue!

Go get your blue and DRESS FOR THE CAUSE!

Don't forget to get your blue lightbulbs for your outdoor fixtures so that you can LIGHT IT UP BLUE tonight and tomorrow night.

www.lightitupblue.org

Been a While

Ok ok ok! I know it has been a while since I have been here but I have been VERY busy taking care of business. I have a few things done and a few other things that just seem as if they will NEVER be done!

During that time, I found out that ABA therapy and habilitation is most for children UNDER 4 (Aeryn will be 5 in a couple of weeks). So, we will have to figure out something else as far as that goes. As for the communication device... grrrr... talk about a run around. The DP (developmental pediatrician) says I should give the prescription directly to the speech therapist. The speech therapist says give it to Aeryn's DDD worker. DDD worker says there is a form that needs to be filled out... blah blah mother freaking BLAH! JUST GIVE HER THE DANG DEVICE ALREADY!!!

WOOSAH...

Since I started sending the music/videos to daycare, we have had ZERO problems (since spring break has been over). I am SO thrilled about that!

Well, I need to go wash this conditioner out of my hair and post a few things on facebook. LOL!

TTYL!

LONG DAY!

WHEW! So glad this day is AL-MOST over! I have been on the run since about 7am. First I went to the hand specialist again (not for me although I DO need to reschedule my appointment). Then I had to RUSH home to get Aeryn so that we could make it to the Developmental Pediatrician's office in time. I did ok with the timing, I think.

Well, Aeryn hasn't been to the daycare since Friday. I forgot that PART of her problem is that there is no school this week (Spring Break...yay). No school means no backpack. No backpack means no daycare. I can't do the obvious (put the backpack on her anyways to trick her into staying at the daycare). That is only going to start problems around the time that they are to head out to get the bus in the afternoon. It's a no win situation (to an extent). My older 2 girls are home on Spring Break as well, so I dont have to put my life on hold because I can just drop her back off at home and carry on about my day! YAY! (sucks for them though)

Lets see, Dr. Jordan says that she seems to be progressing very well. He loves her diet (fruit and cheese). He likes that she doesnt need meds to sleep. I asked him about the compression vest and he looked at me like I had a nipple in the middle of my forehead! He said, "why would you want that? It doesnt have any REAL evidence to support that it works. I dont prescribe those so NO, she can't have one. all it does is weigh them down and make them drag around even when they aren't wearing it."

We DID get a prescription for ABA (applied behavioral analysis). I'm not really sure what its for yet though... RESEARCH TIME!!! Dr. Jordan seems to think that it is a GREAT thing and that ALL children that are eligible for it should get it (so we are going). Even more full Fridays... GOODNESS! He also gave her a prescription for an electronic communication device (they use Ipads at the therapists office and all we needed to get her one was the prescription). We will be discussing that this Friday when we go to therapy. 

Complete change of subject...

Aeryn has eaten AT LEAST 2 lbs of strawberries today! And she is STILL going strong on them. If only she knew the heartache that is PROBABLY gonna happen when they are ready to get out! LOL! Gotta love her!

I did this post RATHER late. I'll be back in the morning. 

Sleep well!

Oh No!

Well, the miracle working MP4 player was killed over the weekend by 3 four yr olds! No daycare for Aeryn today! DAMMIT! We were doing SO well. More money that I dont have that has ti be spent. yay...

Long day yesterday. I allowed my stupid, ignorant, ghetto, dick of a neighbor drag me down to his level of acting an ass in public! Stupid on MY part. All because I wanted to use MY parking space! Lets not forget that he got MAD (he wasnt angry) because I tell the apartment managers when I have a problem with things that they do. Ummm... Isnt that how it works, isnt that whae mgrs are for?? Correct me if im wrong. If im having an issue with you and its serious enough fir me to have something to say about it (knowing that my kids are LOUD) then it must be BAD! You dont want me to say ANYTHING to you at that point.

Im glad I was already in the process of looking for another place (preferably a house) closer to the kids' schools. I cant deal with the nit picking all summer.

Well, headed to work for a LONG day (for my job).

Have a blessed day all!

My life WILL change for the better soon. I have so much good and so many good people on my side. We'll be A-OK!

Later Gators! HAPPY MONDAY!

posted from Bloggeroid

Leaving therapy

Those Chipmunks have her in a zone!

posted from Bloggeroid

GRRRRRR...

So, we use medical transportation which is covered by the medical insurance that we have, right? I called FOUR weeks ago to set up a "blanket" for pick up and drop off. This means that a taxi is supposed to show up HERE around 1pm EVERY Friday without me having to call. GUESS WHAT??? It hasnt happened like that yet. I have had to call them every single week and we have STILL been late to her therapies.

2pm appointment about 20 mins or so away depending on traffic and we are still at home at 1:40pm. GO FIGURE! I cant win, people... I cant win!

FRUSTRATION AT ITS FINEST!!!!

posted from Bloggeroid

It's FRIDAY!

No, I'm not excited about it. This is my day to run around like a maniac. Therapy day, Aeryn with me all day, trying to squeeze in ALL other appointments for the week... SHEEESH can I breathe?

First thing this morning (8:30 am) Aeryn and I had to go visit the school, classroom, and teacher that she will have to adjust to in the fall when she goes to kindergarten. YIKES! All she said the WHOOOOOLE time we were in there was "BYE!!". She was serious too. She even took MY hand and made ME wave bye and dragged me to the door. LOL! I'm going to take that as a sign that she wasn't really feeling it.

We stopped at the store on the way home to grab our favorite thing to eat... ORANGES! As we were walking past the rest of the fruit heading toward the checkout, Aeryn spotted the strawberries and said "OOOOOOOOOOOOOOOOOOOOOOOOH... ber-berries" so I HAD to buy some. LOL! I try to always reward her for using her words (within reason of course).

Ok, now I have to get "refresh" her from being outside so that we can be ready to head out to speech and occupational therapy at 2.

Have a great day all!

Social Security

I just contacted the Social Security Disability office, where I applied back in December, to see if Aeryn qualifies for benefits. I was told that her benefits are "allowed". Who know what THAT means. LOL! I guess its a good thing so I won't complain (too much).

I was then told to call the field office (downtown) to see what to do next. The lady that answered the phone again stated that her benefits were "allowed" and that I need to come into the office to bring in more information (ANOTHER appointment... yay). When I asked her WHAT information I needed to bring in... SHE DOESNT KNOW!! Really? Don't you work there? Why are you answering the phones if you don't have the information that people need when they call? She says that I can either wait for a letter in the mail (up to 30 MORE days) or I can come into the office to find out what I need to bring BACK (that means TWO appointments). I can't win!

Well, I guess I see where my next off days will be spent. Can't do it this week because tomorrow we have to go to the school where Aeryn will be attending Kindergarten in the Fall to meet with the teachers and set up her new IEPs and things. Then after that we have our usual Friday events (speech and occupational therapies from 2pm to 3:30pm). I'm not off again until Wednesday and Thursday of next week. **in my Kevin Hart voice** SOOOOOOOO... I guess we know where I will be!

I think I'm glad my life is hectic. I don't have time to get into any trouble lately it seems.

PLAY ON PLAYETTE (not sure where that came from... it has been stuck in my head for days. Anybody remember the name of the song that it came from?? LOL)

Problem solved

I think I have finally solved the problem of the daycare meltdowns! The MP4 player as had an awesome effect. She no longer wishes to sit in Kim's office in the mornings. She goes straight to class and doesn't even look back.

I guess now this is giving me time to focus on and stress out about the other issues that single parenthood has to offer. Dealing with Aeryn and autism has slowly made me forget that I am doing this all alone (some days). Other days it hits me like a ton of bricks that everything that has to be done for this family has to be done by me or it will never get done because there is no one else there to pick up the slack where I leave off. Therefore, I am always on duty. Luckily I have somewhat of a support system all around. People that are willing to go out of their way to help me do certain things because they know that it will lift a little bit of the burden off of me.

I have a few (very few) friends online that I can talk to about ANYTHING and they are always there to listen. My sister has no problem spending her off days from work taking me to do my grocery shopping (WE LOVE YOU FOR THAT). The apartment complex manager and his wife have given my 14 yr old a job in the front office to help me keep her out of trouble and also help build responsibility and money management. The daycare director and the other workers over there take the time out of their day to walk the twins back and forth across the street to my apartment complex in time for the school bus everyday so I wouldn't have to switch daycares due to the school districts strict bus pickup and drop off boundaries.

So even though my life feels like one huge game of tug of war after another (to me). It's really not so bad.

I have 4 children who love me to death, a sister that is willing to help any way possible (when time permits), a daycare staff that cares more about my children than the money, apartment managers that are willing to help me keep my children out of trouble, and a bunch of friends that are always open to listening to me have my breakdowns and conniptions no matter how big or small!

I got WAAAAY off topic with this one but OH WELL! It's MY blog. I can say what I want. LOL!

Have a good day everyone. I'm gonna go try to find something to get into that won't get me into any trouble...

Uneventful

This morning was SMOOTH! Not too much to say. Left the music player at the daycare so transition from me to them was seamless!

Yesterday afternoon the therapist office (speech and occupational are done at the same place) called to inform me that Phoenix Health Plan doesnt cover her occupational therapy but she can still do speech. in my minion voice WHAAAAAT???

Im confused because when Aeryn was approved for DDD, we had to switch health plans and PHP was no longer an option. So I inform her that Aeryn isnt covered under PHP anymore and all billing SHOULD be forwarded to APIPA. Now she says they dont accept APIPA ans Aeryn cant come back. LADY! STOP TALKING AND RESEARCH WHAT YOURE TALKING ABOUT BECAUSE YOU ARE ABOUT TO UPSET ME!
She tells me she'll check into it and call me back. About three or four hours go by and she calls back... "you were right. Aeryn is with APIPA and since its through DDD, we still accept it. So she is fine for speech and occupational therapy on Fridays at your usual time." All I can THINK to say (nicely) is ok. LOL! Dont disrupt my life any more than necessary until you have looked at the whole picture. (didnt say that but I wanted to).

Im still trying to figure out where Aeryn gets all this energy in the evenings. Everyone else is slowing down and she is speeding up! Its like she is zapping our energy like in cartoons!

Anyway, today seems as if it may be a good one.

Im off to work... yay

Thanks for reading!

posted from Bloggeroid

Aeryn doing one of her favorite things... looking out of the window on the light rail!

When she is looking forward, she is looking at the scrolling marquee thing that has the date, time, and the name of the stop. So funny! She looks at that thing like she can read!

Meltdown Avoided!

We had a nice start to the morning but that is nothing new. The walk across the street to the daycare is where the drama usually starts to unfold... slowly. If there will be drama, she won't step off of the sidewalk onto the asphalt of the parking lot. All is well here. She is actually walking rather briskly this morning. In my mind I'm wondering if she is planning to rush to the daycare to show out or is she REALLY in a good mood today (sometimes its hard to detect her mood due to lack of constant eye contact).

Anywho, we make it to the daycare unscathed! I'm feeling pretty good about this morning. Then, the inevitable! Kim, the daycare director, needs to talk to me about her visit to the school yesterday to observe Aeryn in THAT setting. I have a set length of time that I am "allowed" to be inside the daycare before Aeryn gets the impression that she is to leave WITH me. UH OH!!! As I turn to walk out the door, Aeryn comes out of nowhere and jumps in front of me and starts out the door... and here come the tears. No sound yet, just these HUGE crocodile tears falling from those HUGE puppy dog eyes. She knows how to get you. Seeing her do the "silent" cry is so heart wrenching! BUT!!!!! yes, there is a BUT! I expected something like this or even a replay of yesterday to happen so I was PREPARED!!!! GO ME!! LOL!

In the anticipation of SOMETHING going down today, I had her completely charged MP4 player WITH headphones in my pocket! YES! What is on this MP4 player you ask...? CHIPMUNKS! Nothing but hours and hours of Alvin and the Chipmunks singing. I handed the player to Kim so that she could give it to Aeryn. Aeryn takes the player turns it on and walks away from the both of us toward her classroom.

THE JOY OF PREPARATION!!!

Now, down to the nitty gritty...

Aeryn doesn't eat many things (much like her mother) but what she does eat, she eats a lot of it! I will now be baking biscuits at home and taking them to the daycare so that they can freeze them and have then for Aeryn's breakfast every morning. I will also be taking over a few other things that I know that she will eat. Just to see if maybe part of her morning problem is her picky palette!

I am going to make a call to the DDD (Department of Developmental Disabilities) office to see if there is a way that I can obtain a compression vest (or whatever the hell they call them) for when she is on the road to spazzing out since the daycare doesn't have the staffing necessary to have someone put her in "the hold" until she calms down.

That is all I can think to tell you right now. I'll be back with more as it comes to me. Guess I'll go take advantage of my off day and do something productive. LIBRARY HERE I COME (I need your printer). LOL! Then I have to go buy soap (one of my addictions). Wait... this isn't about me! It's about Aeryn! Go away now... I'll be back later!!! LOL!

My First Post

What a better day to start than today? Its a Monday and the craziness has began!

Back in August 2010, one of my 4 year old identical twins was diagnosed with autism 299.00. That basically means that she is just SOMEWHERE on the spectrum and they haven't made a specific diagnosis as of yet. I do, however, know that there will eventually be a more in-depth diagnosis because she is much too high functioning to just be a 299.00. She is non-verbal and has always been. She never said more than the run of the mill "da-da" at about 6 months or so.

Fast forward to today... She screams and has tantrums and the new thing... peeing on the floor at the daycare. For the past 2 weeks or so, she has been stripping down completely naked AT THE DAYCARE and peeing on the floor. Last week, she peed on her clothes and had to be sent home. She does NOT do this at home NOR at school. I don't know WHAT has set her off to the point that she is doing this but I REALLY want it to stop! It has gotten to the point that the daycare director calls me and has me come and get her because she has gotten too out of control for them to handle that day.

I have 3 other children in the home that I feel are becoming resentful of her and her constant need for attention. We are still new to this so I haven't worked out ALL the kinks in her schedule. We are still running around like we have our pants on fire going back and forth to appointments and therapies.

I and physically, mentally, emotionally, and financially EXHAUSTED!! Who knew one little diagnosis could flip the lives of so many people upside down so quickly? Some days she is the "average" child behaviorally and other days I just want to cry because of the stress and strain that her actions put on me. I have NOT had a break away from my children (for longer than a work shift or school day) since Thanksgiving 2009. I can't afford a vacation, I can't afford a nanny, I can't afford to do ANYTHING but sit and suffer because I am so drained but I am all my children have. I don't have anyone that I can send them to for the summer (mainly because of my Autie's (autistic child's) behavior). I don't even have anyone that will take them for the weekend. I NEED A BREAK BUT DON'T HAVE THE MEANS OF GETTING ONE!!!!

Being a single mother is hard enough on its own. Adding the stress of a special needs child to the mix has me teetering on the edge of insanity most days...