Did she really just say that?

I had just picked up the little one from her new speech therapy place. She LOVES the place, her new therapist. It's been wonderful. In the five minutes I took to go from my car, get Avery, get back in the car I missed a call from the school nurse at my older daughters school. School lets out in 40 minutes so I couldn't imagine they were calling me to pick her up.

When I got the nurse on the phone she started to ask me if I knew about my daughters .... dandruff.
Yes.
Oh ok you checked and she doesn't have lice just dandruff.
Oh ok so it's all good? Yes ok.
She has a special shampoo that we use.
No I don't do it every night.
She HATES to have her hair combed/brushed.
It's a hard thing to deal with.
Her hair is long and thick. We've made two donations of her hair already and she's not even 6 yet. 
Oh she let you pick through her hair?
Oh ok.
Yeah because you are a nurse and she get's that nurses and doctors do that stuff.
She does have a sensory issue with her hair.
NO she doesn't have a full blown sensory processing disorder.
Everyone has some type of sensory issue and that doesn't mean they are going to be diagnosed with the disorder. 
NO she doesn't have Autism.
Her little sister has Autism.
Really? There are different types of things that fall under the Autism spectrum? 
Why YES I do know about the different kinds of Autism.
No she just hates having her hair combed/brushed.
I pick my battles and this is not one of them.
Yes she get's OT at school.
Again she does not have Autism her little sister does.
Again she does not have sensory processing integration her little sister does.
This is not one of the things that is a make or break daily routine.
NO she doesn't have Autism or SPD she just hates to have her hair combed/brushed.
I am a pick my battles type of parent.
Ok thanks we'll work on it.

My look yesterday as well with more of a pissed off expression to add to it.

And when I went to go pick up my daughter the teacher didn't say a damn thing to me.  Not a "she really can't sit still, it's itchy, distracting to her and the other kids." NOPE. Not a damn thing. There was no nurse there either. I've seen the nurse in action with other parents so the phone call didn't really surprise me but if she had tried to educate me about Autism and SPD (Sensory Processing Disorder) in front of other parents I probably would have lost my shit.

Now I understand dandruff is gross. The scene with Ally Sheedy in The Breakfast Club usually makes me want to hurl but it's not that bad. But we are working on it. When she was a little baby she had cradle cap ie. dandruff and on a baby that's much easier to take care of than 5.5 year old who will scream bloody murder when you are trying to comb out their hair. If she was a boy her head would be shaved but that is not an option here yet.

If I thought cutting her hair short would help with the "I don't want you to comb my hair freakouts" than I would do it but we've gone down that path before and it didn't change anything.

Who knows maybe I'll get a bug up my butt this weekend and take her for a cut but I doubt she would want her hair cut now. grrr.

It didn't suck and that was awesome

Life has been pretty crazy the past week. After what was suppose to be a quick faucet replacement turned into a mini renovation. By the weekend we finally had a working shower and flushing toilet. Ugh. I don't want to go through that again. It pretty much sucked any and all available funds and some not so available to take care of this problem. Ugh. Which has led me to have the worst attitude ever. It's just not a great situation especially with Christmas this week.

With it being Christmas we have a few things to get out of the way before the big day. The oldest this morning had her holiday school program. She had to learn the song  32 feet and Eight little tails by Gene Autry. Thank goodness it was on ITunes or she would have not learned it. "Mommy I have to hear the music to sing it" she would say.  Our paperwork said the program started at 9:30am and unlike most of the parents we were early. The thing about school productions is it brings out people you had no idea lived in your neighborhood. I also now know the woman next to me lost a bunch of weight because they took out a 30lb mass from her abdomen. People left and right were asking her about it and I was just amazed by all of this. 


All the kids were so well behaved (better than the adults!) and put on a great show.

They sang it all very well and though she doesn't look like she's singing she was opening her mouth at least. LoL. My husband was able to take off this morning to see it but with the bathroom b.s. last week he had to go back into work so the afternoon shenanigans were up to me by myself.


The next thing on our list was to go see Santa and it was up to me to take them on my own.


The last couple of years we have gone to see Santa at the local Bass Pro Shop. Santa's free and he's got the real beard and all that jazz. I was worried as we were heading out that way that it would be crowded since it seemed that people were everywhere. When I pulled into the parking lot I saw a bunch of school buses. Seriously? The reason I was getting worried is that with Avery it's just hard for her to wait, and to take turns. Paige can be helpful at times but I didn't tell her we were seeing Santa just going for a surprise. She realized it was Santa when we pulled into the parking lot. Then her excitement went into over drive and I had no idea if she still had her listening ears on.


As we walked through the parking lot I saw who the school buses belonged to. It was like it was a sign. The buses belonged to a local Christian special needs school. They range from elementary to high school children. They also have a specialized Autism program. I knew when I saw that that maybe I picked the right time to come to see Santa and God was giving me a break today. 


And by the grace of God the Santa area was practically empty. No line. We walked right up and waited for a screaming/terrified baby and laughing parents (it seriously was one of those funny moments!) to be done and we took our turn.

Waiting patiently!

The Smurfs had to come along to see Santa too.

Excitement in overdrive.

Personally I love these. They turned out awesome. The girls were so well behaved. Avery is looking at the camera in almost all of the pictures I took.


No meltdowns, no waiting in line, everybody was awesome.  This was certainly a highlight to my holiday so far!

Supplemental insurance policy for your child with Autism?

I had a phone conversation today with an intake/insurance specialist about setting Avery up with a speech therapist starting in January for when our insurance starts over. See way back in July we learned that we maxed out of Avery's insurance for therapy. She is only allowed 60 1- hour sessions. My husbands company does not have to abide by the Illinois Autism Insurance Mandate because they are a self funded policy. See this post for when we found out: bad news.

So the clinic I talked to today asked me if we had ever thought of getting a supplemental insurance policy for Avery that would be covered by the state mandate. Um say what? No I never thought of it. Plus no, nobody ever, ever mentioned it to us that that could be or should be a possibility.

The guy on the phone basically said well if you end up paying a larger amount of money for out of pocket expenses it could be worth it to  spend the money on a policy so that the mandate picks up the big bulk of it. Make sense? In the long run if you have to have a deductible of a couple thousand it would be worth it to get up to 36K in other benefits.

For Avery we are thinking it would be worth it. We really want her to have more speech therapy than what she is getting at school and more diverse therapies such as to try ABA out for awhile and see what happens. Majority of the time we feel we aren't doing enough for her and if this gives her more of a chance than what's the problem with at least trying right?

So what I am asking you my small amount of readers is, have you gone that route to bypass a crappy work supplied insurance situation? If you have gone this route what has been your experience? Was the out of pocket cost per month worth the therapies you received?

If you have a blog and think this might interest others who might have more experience with insurance and Autism would you please share so I can see what others might say? Thank you! 

One day with a kid with Autism is just One day

You know that saying "you meet one kid with Autism you've just met one kid with Autism". Well life with a kid with Autism can be described like that day to day.

Avery's been sick this week. She missed school Monday and Tuesday. When she got ready to go to school yesterday she was in a good mood, ready to go. She didn't fight getting on the bus (this is a hassle now these days) and I even got a great report from school. When they write that she said "Thank you!" in the right context it makes your heart beam with joy.

So what happens in the 12 hours she's been asleep to change her into a Tasmanian devil? Hell if I know. She was crabby. She didn't want to get out of bed. She was whiny when I put her down at her seat for breakfast. Which when you wake up early to make blueberry muffins that she loves you would expect a happy kid. No not so much with her. Whine. Whine. Whine. Wine oops I mean Whine. She didn't fight getting her coat on, and didn't fight standing at the door to leave. What set her off and this is where I don't have control over it is her sister was refusing to get in the truck to leave for school.  Like literally standing there with arms folded yelling at me. So when I lost it this am and said "get your ass in the truck" (fine parenting skills right there I tell ya!) that's when Avery started to get upset.

When Avery realized she wasn't getting in the truck is when she started to throw herself on the ground in the driveway. Which of course every parent driving their kid to our oldest kids school could witness. All the while the oldest is standing there yelling at me. FML.

I feel bad for the bus driver. She pulled up and saw me chasing Avery in the driveway and throwing her over my shoulder so I could get her on the bus because she was going all "no bones" on me. Since I now help get Avery on the bus the meltdowns are not that bad. So she cooperated on the bus (seriously?) and she was off.

When I got the other one to school she actually stopped to give me a kiss and actually said, "have a good day Mama!" LOL. One day little one, one day!

Avery school pics 2011

Lynn over at Autism Army Mom is hosting a Blog Hop of all those wonderful disastrous professional school pics.

Here is Avery's submission:

We never took her back for her retakes either. The retakes were on a Saturday which is like unheard of in my circle of friends. Her older sisters picture wasn't much better.

Now some may say why critique if you know how hard it is at home to get a good picture? Well I'll tell you why I can critique. I used to do school photography. For a wonderful craptastic 8 months I got to travel through out the Chicago land area and make $80 a DAY. Now on days when I worked about 4 hours it was sweet. But on days where I had to drive 1.5 hours to get to a local high school at 5am to set up for 6am photos with a bunch of asshole teenagers it wasn't worth the money.

I had to do a lot of special education kids pictures during my few months taking pictures. Hard is understatement. But I tried to be patient. The aide's were helping to get the pictures as best as they could. Except for the one time I was at a school and the aide and another adult were muttering under their breath about how much of a little bitch this girl in a wheel chair was being. That pretty much was my breaking point of that craptastic job. I can not take adults calling little kids names like that. Especially those who are suppose to be helping them.

Sigh. Anyways all those days of good/bad days with taking pictures of kids came screeching back when I saw those pictures of Avery. Yes there could be some cropping that could work but it's still upsetting. It's one of those things were I think "fucking great. is this how they are all going to look?" I thought "was someone muttering names under their breath about Avery?" and "why didn't someone get some damn fucking bubbles! she loves bubbles! She would have smiled her little ass off!" I could have had a picture of Avery and a bunch of tiny bubbles hanging in my living room. Now that would have been great!

Halloween 2011

I wholeheartedly thought I was going to start this post out with "Halloween was a big fat fail". I can honestly say I was so very surprised today!

The older one had said she was wanted to be Jessie from Toy Story for the longest time for Halloween. We even went to the store to get a costume a few weeks back and as I looked at the costume I truly felt there was no way I could spend a good $25 on a flimsy ass piece of plastic for her costume. I had already thought of how I wanted to do a cow girl costume for her just in case. So after that trip to the store I decided to fore go the store bought costume for a home made one. I'm so glad I did!!

I hit up a resale shop to look for a plaid shirt ($3) for her. We had extra jeans (free) that were hand me downs from a friend for her pants. I got her a pair of black boots ($16) from Payless she can wear for a long time.  My cowboy hat that we didn't have to spend extra money on. I then used some extra cow fleece (free) that I had from old projects for the chaps for her pants. Here she was today:

A little blurry but cute as hell!

We thought she might freak out because it wasn't a real "Jessie" costume but she was so excited to wear it! She was the only little girl in her class who had a home made costume. Pretty darn proud of myself if I do say so!

Then there was Avery. I couldn't find her a cow costume for the life of me. As long as I can I will want them to be matchy match. Then I debated about making a costume for her. I had thought of doing a flamingo or any other type of bird since she LOVES them so much. Then I thought well it might just be a crap shoot if she even wants to wear a costume. I pulled out one of Paige's old costumes instead and I put it on her and she was great with it. It was a really cute pirate costume she did not like. I added a tutu to her bottom. I also put on one of her regular hats she loves and put the head wrap on that and she kept it on. I wish I could have gotten a really good picture of her in it. All I could get was a pic of her sitting at home waiting for Daddy to go through her loot.

Awesome day!

The first house we always hit up for Halloween is my Dad's of course since he is right across from us. As we were leaving there Avery had a mini meltdown and we thought oh no this is not going to go well today. The next house she was still kinda of confused of what was going on. The third house she was getting it. By the fourth house all I had to do was go up with her and just explain a little bit that she doesn't talk so she can't say "trick or treat" and everyone was very understanding. She held out her hand or her bag and got a boat load of candy. She even held onto a bag of goldfish crackers for the entire time we were out there. We were so proud of her and her big sister who was a gracious little trick and treater today! Great day!

Fall progress meeting update

This morning we had our first progress meeting with little one's current teacher, all of her therapists, social worker, the assisted technology professional and the special ed directors. This meeting was something we had asked for back at her initial evaluation since she is nonverbal and we really can't get an idea of how she is progressing at school.

To sum it all up she basically is a little rock star for everyone at school. Like she amazes them every day with what she does. We even asked at one time if we were all still talking about the same kid because the stuff she does is stuff she doesn't do at home. She also has been accepting of a new schedule they implemented at school in the past week. She went from periods of instruction that were 15 mins long to new periods of 4 min tasks and then 4 min breaks. She seemed to have accepted the "first, then" routine very well. They also said she has made leaps and bounds improvement from how she was in the summer school program, then to the beginning of the regular school year until now. Lot's of eye contact from her. Lot's more easier transitioning. She does still have her not so great days but they've said it's a big difference from the before. 

So all pretty amazing right? It was sounding pretty good. We got to a main sticking point that has been irritating us and that was the issue of having a communication device for her. We even brought paperwork for simpler. For the last few months it's been sounding like they didn't want to give her one until she was able to show them that she could point at things for choosing. While we understood that we also knew that what ever you gave her she could learn very fast. She has an IPad that she has picked up very quickly. What happened when we got to this meeting today? The assisted technology personnel said "research indicates that there should be no qualifications required for the use of assisted technology." Ok. So now it was basically well what do you (her parents) want to do? Um get her something to start trying. I almost felt like they wasted her time for the last couple of months and needlessly pushed off our requests for starting the trial and error process of what will work best with her.

I also brought up whether or not she should have an ABA therapy plan implemented. They basically feel that what they are doing with her is working. The social worker went on a long tangent about how ABA is very time consuming and leaves the child isolated from other kids and they don't get the socialization that they need. They do have a consultant from another institution who came to the school to observe and give some tips at the beginning of the year because the school felt they needed to have someone look at their Autism program and give them some ideas. The consultant will be back next week and the team will revisit it when she is back.

The social worker at the end said she has the numbers for a few ABA therapists she could give us. I said that would be great BUT we have already maxed out of our insurance in July so it wasn't something viable for us now.  Considering we will have to figure out a program for her next year to maximize her needs and the available therapy she will have it's going to be a game of what will be the priority. Insurance blows.

All in all it was a good meeting. I just wished I could see her doing all these wonderful things for her teacher and therapists. Seeing is believing right? Sigh. Hopefully soon she'll be doing these things at home.