"Woo Hoo!"

Something pretty cool happened today...Rachel, other than baby babble is totally non-verbal. She has never said her first word or anything like that. When I say that people usually say "Not even Mama or Daddy?" No. Not even those...last time I checked those were words (sarcasm) and she has not said a word.

Anyway, she has a few of her own words and those are the only sounds she will imitate, so in addition to trying to get her to imitate basic sounds that we say to her, we also talk to her in her own words that way she at least successfully imitates something and realizes it's a good thing.

I had a friend over this morning, she and Rachel have become good friends thanks to fudge covered Oreos and Ghirardelli Peppermint Bark...it only took a year for Rachel not to run screaming from the room every time she came over. My friend kept saying "Woo hoo!" to Rachel and Rachel suddenly imitated her! More than once!!

Of course the first time she did it I was out of the damn room (figures.) My friend started yelling "She did it!" so I ran out of the room I was in and I heard her do it twice. We even got it on video but as most kids do, Rachel knows when the camera is on and she stops performing. She did do it once though in the very first second of the video and then she wouldn't do it again. Sad mommy....

At the end of the day (I hate that saying but it seems appropriate here) it's not actual words but she imitated sounds that were not part of "Rachel speak" and that is amazing.

Aaron has severe apraxia, there is no question about that, but Rachel's actual speech disorder is a mystery so I am and have been very eager for her to start trying to imitate anything other than her own stuff to see what comes out. Hopefully there is more to come in that area. I'll try to get it on video again where it's not half a second long.

Awesome Mommy and Roo Day

Today was Roo's first dental appointment.

My husband and I have 2 things going for us in this autism packed world in which we live that most others do not, in that our children both sleep well, (mostly) and they let us brush their teeth every day without (much) complaint. Their tolerance levels for it are finite though, especially with Aaron. We have to move fast or the inevitable freakout will happen. According to the dentist though who specializes in special needs children Aaron's teeth looked fantastic. I went in there with him a couple months ago fully expecting him to say they wanted to sedate him and do a full dental exam. He just had to look in there with a mirror while Aaron screamed bloody murder and we were all done. Simple as that!

Roo's appointment this morning was the same way. In and out...literally! She was easier than Aaron which I expected although she still isn't cooperative at all and it's difficult if not impossible to explain to her what you are trying to do. Part of that is her age, part of that is autism.

The hardest part of the appointment was getting there. We live 90 miles from the city where the dentist is. It is all rural highways of nothingness and three days ago it was 70 degrees and my air conditioner in my house was on. Today it is snowing and the temperature is 9. NINE.

The snow sitting all over the highway today was all light and airy so every time a tractor trailer blew past us at a million miles per hour I couldn't see the road for like 30 seconds. That sure was fun.

On any given day Roo...okay...I will inevitably type her name by accident at some point since now the blog is also about her. I gave her a nickname before because the blog originally was only about Aaron (and me and my issues...haha.) I am too scatterbrained to remember to do the Roo thing every time. I have put her real name in a blog post before by accident and had to go back and edit it out. It is pointless to keep trying. Even though Roo really is her nickname around here I still won't be able to be perfect with it so why even try....I use Aaron's real name after all. Her real name is Rachel. We call her Rachel Roo.

So anyway.... On any given day Rachel tries my patience for a good 70% of the time she is awake. She is a complete spaz. I'm not complaining right now, just giving background information for the point of this story. And it's kind of an interesting side by side to Aaron because they are complete opposites as far as autism is concerned. She bangs in to everything on purpose, throws everything she can, (food, loudest things possible, etc.) is defiant in every way possible, when people cry she laughs, she will not eat even though she is starving so feeding her takes hours or she holds food in her mouth for hours, she does every dangerous thing imaginable without blinking an eye and she will not sit and play with anything for longer than a couple minutes and she definitely will not play with us unless it is rowdy play (chasing, swinging,etc.)

People sometimes ask me what to get her for gifts. I don't even know the answer. I don't even know what she really likes. That is how often she plays with stuff. She likes to jump and do things that are dangerous. Maybe for Christmas someone can pay her tuition to stunt man school. There. That's a gift idea.

One of her biggest issues is communication obviously. She's too young for an AAC device and even though she has taught herself all of Aaron's sign language signs she isn't very good at communicating otherwise and it is frustrating for all of us. Especially for her.

I guess a big difference between Aaron and Rachel communication wise is Aaron is very good at communicating what he wants non-verbally because he knows he cannot get it himself. His gross motor skills are not the greatest and he is pretty scared to try and do a lot of things. Rachel is pretty bad at communicating what she wants because in her heart of hearts (I believe) she thinks she can get it herself if we don't understand. So she will use minimal effort to ask for help and when we don't understand she will just try to do it herself. That is sometimes/usually where the danger, chaos, and destruction comes in to play. And even if you offer to help her after she has started the process she wants nothing to do with you because she enjoys danger, chaos and destruction.

That's just a glimpse of her but you get the drift.

Anyway, she's difficult to say the least but she is spectacularly adorable and cute and silly. I have to resist the urge to hug her every second which is hard to do because she is not affectionate at all and has to initiate the affection herself or she'll straight up kick your ass. Everything she does, it doesn't matter about 2 seconds later because she is so f'ing cute. My husband all the time says to me after she does all this terrible stuff, "But look how cute she is!" And you know what? He is right. She still gets in a reasonable amount of trouble, we do have consistent rules around here (we have to or it would be complete chaos) but I find it very hard not to immediately smile when I look at her one second later because she will always be doing something adorable.

When I take her out in public people say it to me too. People stopped us in Sam's Club and Target a bunch of times today because they wanted to say hi to her because she is so cute. I'm not trying to brag, I'm just sayin....with her behavior it's a good thing for her she's so cute. Plus even though her affect is very flat most of the time when she gets in to a silly mood she is really hilarious. She's one of those people where you really appreciate the little moments. I love her so so much.

We had a lot of errands to run today after the dentist and I was (sort of) dreading it because of the cold and because traditionally Rachel isn't cooperative. Aaron has his iPad and can be distracted for a good amount of time with that. Not Rachel. There is nothing to distract her. Plus we were getting close to her nap time. And for the record I don't take them out together. It's one or the other. That is just straight up insanity when it's both of them.

We went to 5 different places today for over 3 hours and Rachel was a perfect angel! She was smiling and happy and looking around, she wasn't fighting to get out of the carts like she usually is (she is not allowed out of the carts at any time...that would be a disaster.) If she tried to grab things and I told her to stop she actually stopped! The only time she got a little squirmy was in Sam's Club but it was because she was getting tired. I did however, have a secret weapon and had a couple squares of that Ghirardelli Peppermint Christmas Bark in my pocket. Thanks to a friend of mine who came with us last week while we got Rachel a vaccination and a flu shot she figured out that Rachel loves that stuff, so I had a couple of those at the ready just in case. It worked like a charm. Sort of like Aaron's magic Halloween Tootsie Rolls (he managed to get through his class trick or treat parade for the very first time because I was constantly feeding him Tootsie Rolls.)

We are of course home now, and while I'm typing this she's throwing sippy cups on our bamboo floor so hard it makes dents in the floor and gives me a heart attack, she's taking the string cheese she's supposed to be eating and smashing it in to the carpet, taking Aaron's Chuggington trains and throwing them around....etc....etc....etc.

It was just a really nice day though. It was freezing and just a day of running errands, but I felt like I got to just spend the day with my little girl, not my little girl with autism.

It has taken two and a half months to get here but the report from Rachel's doctor finally arrived which is the detailed report about her autism diagnosis. It is sitting in front of me right now in a giant envelope. I have been dying to read it for two and a half months. I don't even want to open it today though because I know it will depress me so I will open it tomorrow and just enjoy the rest of the great day Rachel and I had together....while she throws stuff around behind me... ;)

My Baby Will Have a Voice Soon :)

Something so wonderful happened today and I'm finding it hard to even put in to words how grateful we are for it.

As is par for the course with me I have to lead up to the big news with the stuff that led up to the big news...that makes it better...you all know it does....

Sooooo.....

Part 1 of 2 of the lead up:

We had Aaron's IEP meeting today which went really well. I got to meet the teachers from the "big kid's school" that Aaron will be attending next year. They were there because Aaron's IEP that he got today will carry over in to the next school year for a few months. I have wanted to meet them and find out more about the kindergarten class Aaron will be in. It's called "Developmental Kindergarten" it's basically kindergarten for those who aren't ready for regular kindergarten. I'm so glad something like this exists.

Anyway, Aaron's IEP focused on all the usual things, speech, OT, PT, social/emotional therapy etc. and there was a lot of focus on communication because of his mood lately, (which is still a mystery) and the success with the iPad we had for a while on loan.

I told the 10 or so people that were there about the iPad my husband and I won on our business trip and that all we needed now was the app. Everyone thought that was great but we still had no plan in place for the app or who was going to get it or how long it would be before Aaron could get this thing going. It was in the works but every day without this thing is another day Aaron is frustrated at not being able to communicate.

Part 2 of 2 of the lead up:

Last month Aaron's school did a fundraiser where we sold these cool 3D cups with sports logos on them from professional sports teams. I sent out an email to family and friends to ask if they wanted to participate.

I have this amazing friend who I met about 15 years ago, she was a bridesmaid in my wedding, we have done so much together, we worked together forever, we even worked together with my husband at one point. Those were some fun times. She has an amazing husband and an amazing family. Her parents are amazing, her sisters are adorable, (they are adults but still adorable) and she and her husband have the cutest daughter ever who is only 3 months younger than Roo...they are BFF's even if they don't see each other very often....and maybe don't know it.

So my friend, we will call her "JJ" (heh) wanted to participate in the fundraiser and so did her parents but they live about 4 hours away from us and we are all busy, so when we finally got in touch with one another there wasn't enough time to get her order in before the turn in deadline. She and her parents decided they wanted to donate money anyway...super nice of them. That's just the kind of people they are.

Okay, here's the BIG NEWS:

JJ's husband read my blog post from the other day about Aaron's AAC device and that we didn't have the app yet. While this was certainly not my intention with that post because I did not expect this at all, I was just excited that we won an iPad, I got a text from JJ today asking if I had time to chat. I did have time to chat, so she called me and said that she and her husband had the same idea without really even talking about it and that they and her parents wanted to gift Aaron his AAC app...

Even as I am typing this I am shaking my head because I am trying and failing to come up with words that express how amazing these people are, but there are really no words for how wonderful a gift this is. Seriously...no words. How do you tell people thank you for giving your child the gift of a voice? You really can't....

It is noteworthy that people who aren't even related to Aaron (although we do consider every one of them family) have been there for him in the past for so many major things and now for this. They let us stay with them every time we have to go to Denver for something Aaron related so we won't have to pay for a hotel, they participated in the Autism Speaks walk with us, they do research on sensory toys for him, they do more for Aaron than some of his own blood relatives. And now this....

I only wish Aaron could understand what a wonderful gift he has been given! I will find a way for him to say "thank you" with his new app though...I can't wait!! I called his speech therapist and she was super excited too...

The shock proof case is on it's way from Amazon so there will be no Aaron/iPad interaction until that gets here...but I can plug it in to the charger and download the app! haha

Thank you thank you thank you times infiniti!!!!! We love you guys!!!!

AAC Device for Aaron…We’re halfway there!

About 6 months ago a friend of mine became the speech pathologist at Aaron’s school.  Prior to the start of the school year she and I went to a conference for an organization here in my state that lends iPads and a few other devices out to people and schools loaded with all the AAC apps that are available to people with communication needs. They let you keep them for a few weeks so you can play around with them before you go spend hundreds (sometimes thousands) of dollars on something. That way you don’t have to do it sight unseen.  The conference was great, I learned a lot and saw a lot of different devices and apps I never knew about.

I also saw the DynaVox which I have blogged and talked about before.  I knew about it from the Kreed’s World blog.  Kreed is 17 and communicates with a DynaVox and does it really well! I think the one we saw is the one Kreed has and it seems the right size for someone his age. I liked it when I saw it in person however it is big and Aaron is still pretty young…I think he would drop it a lot…and it is super expensive.

About a month ago my friend/Aaron’s speech therapist (and Roo’s too) got on loan, an iPad from this organization loaded with a bunch of AAC apps. We ended up using Proloquo2go. She set it up for Aaron to use in his class for a couple weeks and although I didn't get to see it in action he apparently used it quite a bit and it went really well!! We do a photo collage for the kids every year so they can show photos of their family to their classmates. I have to caption Aaron's photos because he is non-verbal but this year he got to sit with the therapist in front of the class and tell them with his device who each member of his family is. That must have been so great...that is one thing I wish I had seen.

I got to take the iPad home for about 4 days and I didn't get a lot of opportunity to play with it, but from what I did see I liked it. I also like the face that all the people at the school liked it and especially that Aaron liked it and was receptive to using it.

So, everyone was bummed when we had to send the iPad back. Aaron has his own iPad but it has all his own stuff on it and he would never be able to use it as his AAC device. He needs a separate iPad to use as a dedicated AAC device.

Enter the business trip my husband and I just went on.

Every year my husband and I go for 3 days to a conference/market for our business. Long story short, there are hundreds of vendors there wanting us to sell their products in our store so to get us to their booth location in one of the largest convention centers in the USA they lure us over there with drawings for prizes.

One of these booths (which we actually went to because we were buying something anyway) was giving away an iPad mini. Well lo and behold, of all of the things we entered to win at this market we won that iPad mini!

Actually, Aaron won the iPad mini! Before we even arrived we had talked about what we would do if we won another iPad (we won an iPad the year before too...it's my husband's iPad now) and we said we would make it Aaron's dedicated AAC device. So now we have the device, we just need the app which is a lot of money but supposedly the school district will pay for a communication device for Aaron but I don’t know if that’s while he’s in preschool or if he has to wait until next year when he's in the big kid school.  Maybe they’ll go “halfsies” with us on the app…haha.  He’s on a waiting list for state assistance that will pay for a device but I don’t know how long that will take.  It could take years.

He has been really out of sorts since we got back from our trip. Very moody and upset, stimming a lot, chewing on everything, hitting/kicking, etc. I can’t imagine how valuable it would be to have a communication device right now that Aaron was already adept at using so he could tell us what’s wrong. I haven’t the foggiest idea to be honest and it’s very frustrating.

But…we’re halfway there…how awesome is that!? If we have to fork over our own money for the whole app we will, we just want for Aaron to be able to communicate but some help from the school would be nice and it would certainly speed this process along. We shall see....

I really want to write a letter to the company that gave us this iPad and tell them what a gift they have given us. They have accelerated our child’s potential ability to communicate by a huge amount of time and that is worth everything. And it was all literally luck of the draw….