Friday, December 21, 2012

Our Year in Review 2012!

Wow!! Are we really coming to the end of 2012? This year has been such a whirlwind of emotions, ups and downs, and many triumphs - I can't wait to see what 2013 has in store for us and Mr. Cade! 

As a mother of a child who has Autism or any delays your heart sinks a little bit every time you see a neurotypical child around the same age or even younger  doing and saying things your child should have done months ago. The older my child gets the more painfully obvious his gaps become. Don't get me wrong, therapy has helped us so much and who knows where he would be without it -- but I'm not going to lie and say it doesn't make me feel a little sad when I see kids much much younger doing so much more. It makes all of our hard work and progress seem insignificant! Oh Cade can do this, this, and this now. "Oh myyyy child was doing that a year ago." Yeah well walk a day in my shoes and you'll understand why I work SO dang hard for every word, sign, piece of progress we make -- and drill it over and over again so it sticks! I have to remind myself of this too, even when parents are sweet and say things like he's made a lot of progress, your doing a good job, any progress still puts him behind where he should be and makes me feel like I'm not doing enough for him. Thats just a leo mommy thing I think! Thankfully Cade is still young enough where a lot of people see him and say oh he seems normal to me? (Thanks, I didn't know my child wasn't normal by the way.) But then get strange looks when we have a melt down at sears because I wont let him play with the display carseats and strollers and the huge meltdown it becomes. (Trust me, the times we've let him play with them no time limit is enough, its easier to walk away or avoid it all together!) This is acceptable behavior being a little under three but what about when he's four, five, six... or god forbid that 8 year old I saw wailing on the floor because he was too tired to walk -- is that what we have to look forward to?

Anyways, This post is supposed to really be about how far we've come and a wrap up of our year. It's easy to get caught up in the frustrations and struggles of the autism roller coaster but we really do have things to be thankful for this year. At the beginning of 2012 when we were first getting our diagnosis and undergoing all of the medical testing Cade could only say mama, would really only play with thomas the train, couldn't make a mark on a piece of paper with a crayon, anything involving fine motor activities seemed impossible to accomplish. (Even stacking more than 2 blocks, doing simple shape puzzles, or being ale to communicate when he was hungry were all daily challenges!)

Now Mr Cade has 24 signs and can communicate WHAT he wants with us and trust me he knows what he wants! While he still really does like thomas the train, he is beginning to love other things. He is really into calliou and zooboomafo, and even starting to really like bob the builder! He can color and is begining to try and trace, and even use scissors. (He's not great but even knowing what scissors do and trying to find a way to get them to work is progress!) He LOVES playing baseball and hockey which is irritating to my husband who has a collection of hockey sticks on the walls in the basement that "aren't toys!" One of his therapists at the center must be playing baseball with him because he has this cutest little baseball stance! I see t-ball in our future! :)

He is also adapting so well to all of his new found wooden toys that we've gotten him and will play endlessly with them! We trying to focus more on toys that he has to manipulate to get to work -- because lets be honest hot wheels, trains, and trucks are super cool and we still love those, but all you really have to do is move them back and forth and occasionally crash them! We got him a whole bunch of new toys that really inspire imagination, creativity, or that you have to interact with to get to work (some melissa and doug food cutting sets where they stick together with velcro and you have to chop them apart really working on that fine motor and muscle control, some new chef toys, a wooden castle "dollhouse", interactive drill toys that will actually design a picture when you drill in the pegs, snap matching toys that you really have to press to get into place, ect. The one battery operated toy that santa told me he was bringing him is this glow in the dark race track that you can build SO many different ways. I see countless hours of building and creativity ahead! He must be playing with similar toys at ABA therapy because at his occupational therapy appointment she had a new puzzle for him that had 3 large shapes and he did that puzzle so DANG fast I did a double take. That is definitely a new skill. Matching objects and shapes is super challenging for him due to some visual processing issues he has. Thankfully this looks like its getting MUCH MUCH better!  

He has been doing so incredibly well since he has started ABA therapy he really needs that structure. While a lot of people don't understand how matching puzzle shapes, similar color bears, and signing can shape and impact his future its been clearly obvious to us. As soon as he has some of those basic skills down it makes everything else so much simpler! It's like trying to do algebra before you know how to subtract, minus, and multiply. Math makes a lot more sense when you have those basic skills down! Two months of ABA therapy has made SO much progress with what he is able to do and how he is able to communicate with us -- his vocalization is getting so much better too! He still can't say a whole lot for actual words but you can start to tell yep he's trying to say ball, spoon, bowl, ect. I can't wait to see where we are after 6 more months of therapy! 

In the new year his schedule will look something like this:
Monday 8:30-2 therapy
Tuesday 8:30-12 therapy 12:15-1:15 occupational therapy
Weds 8:30-12 therapy, 2:00-3:00 early childhood therapies
Thursday 9-12 therapy 1:15-2:15 speech therapy
Friday 9-2 therapy

Come summer, I am going to have to figure out where to fit preschool into this schedule. It is a lot for a little boy but the progress he's made is so worth it!

Sunday, December 9, 2012

Cades Quirks

People always ask me how we knew that Cade was autistic. I mean, its not completely out of the realm of normal neurological development for a child to be under the age of 3 or even over the age of 3 and not be talking. Cade can seem perfectly neurotypical in one moment and autistic in the next. So how did we know?

 Routines

* Cade co-sleeps with us. Usually my husband lays on one side of the bed, I lay on the other, and Cade is sandwiched between us. Well one night I wanted a backrub and put Cade on the other side of me and he kept shaking his head, crying, and pointing. The minute I moved back to my "spot" he smiled and was fine.

* My husband took my car to work with him one day so he could get the oil changed in it leaving us his vehicle. This led to a 45 minute crying/tantrum in the car because it wasn't "my" car. No amount of consoling helped him. He still gets very upset if we do not take the same car or if his driver that takes him to school has a different color van that day. 

Obsessions

* Cade has several obsessions. I thought how much he liked thomas the train was an obsession. Having to carry them constnatly around the house, playing in back and forth motions for hours. Well thomas has nothin' on the garage door, the carseat, or my car keys. Cade is our reserved garage door opener person. Anytime we leave or come home he has to be the one to open the garage door so the garage door opener pretty much permanently lives in his cup holder. When we get home opening it and closing it once isn't enough he has to do it as many times as possible and no matter how many times we let him do it, it still results in a huge melt down and head banging because we don't want the motor to burn out. This is the same case with my car keys or carseat strap buckles, stroller buckles (or purse buckles, ect) He could sit there for hours and hours buckling and unbuckling the carseat or straps. If we take them away or re-direct him from messing with someones poor stroller at the mall it ends with a huge inconsolable melt down.

Quirks

* Even from infancy cade wouldn't touch a fruit or a vegetable period. I know I know, most kids like veggies or fruit its normal, ect -- but when I mean not one -- I mean not one. We got him to taste a strawberry one time and even eat pineapple when he had a cold once but never again did that happen. The only way I can get him to consume any fruit or veggie is to physically hide it in a smoothie or shake but his ability to spot it is pretty amazing he can taste it the gagging, and heaving starts. The only meat he will eat is hot dogs and processed chicken nuggets which I'm pretty sure has no to little actual meat ingredient in it.

* Cade has super sensitive hearing. He is to the door before I even know that anyone had even pulled in the driveway. He covers his ears in the shopping cart if the store is too loud, and public restrooms are a nightmare because the echo so badly, but at home he tunes out a lot of the middle sounds. If its not super quiet or super loud he's not as responsive. 

Never Complains

* This sounds like a silly "symptom" but even when he was a baby and we were past the horrifying colic stage Cade never complained or would cry for anything if we were out of the house. We could be in the car for 5 hours and not once would he cry or make a peep for a diaper change, bottle, ect. If we were outside you wouldn't know that I had a kid with me he was so quiet taking everything in. Now that he's older he will occasionally make some noise if he sees something really cool or if he sees his sister have something he wants but otherwise he could still go all day without making a peep for anything.

Mommy Insticts

*There are many more little things that I could list that tipped us off that there may be a problem but the main thing was my mommy instict and that is worth its weight in gold. There is nothing more powerful than the knowledge a mother has in her gut for her child. Don't settle for drs who say lets wait and see, or drs who try and belittle that instict. You are that childs' mother and you know best.

Tuesday, November 27, 2012

Signs :)

Cade has been in therapy for 17 days now at the center and he's really started to pick up signing. The therapists are great at making him request everything and if he doesn't know the sign they hand over hand prompt him and then try and get him to do it again and again. When he first started ABA therapy he had the following 10 signs: 

Please, more, eat, all done, baby, love, go, stop, dog, and horse
In just the little time that he has been there he now knows 23 signs! 

The new ones that he has learned are: 
Swing, crackers, drink, train, tree, ornament, car, game, up, sorry, wagon, and push! 

I am sure there are more that he is capable of just have to keep working on getting him to do them. We are renewing his IFSP plan tomorrow through early intervention and it sounds like getting sign language added to his goals is not going to be an issue! YAY! :) 

Friday, November 16, 2012

A little update :)

      I think that we are at a point where I finally have Cade in every service that is available to him. Which is great but now what am I supposed to do? Where are my instant soup results? Being a Leo mama lion I'm not one that can just sit back and watch easily. I want to be doing something, and when theres nothing else to do I want to find more to do. He just finished his second week of ABA therapy, we do the early intervention services, additional OT, PT, ST. We're getting him into see the chiro to have some nutrition testing and a crainal adjustment but aside from making sure he gets to all of his appointments now I'm limited in what I can physically do. I try to work on what I can at home with him (puzzles to work on fine motor skills, matching, number, and letters, ect) but I don't want to branch into doing "real" aba therapy with him until I get the training and learn the proper way to do it at home. Consistency is really important with ASD kiddos! After his therapists at the center are able to finish doing the discrete trials to see where is at and develop all of the specific things he needs to work on, then mommy can learn the plan and the right ways to execute it at home too. His supervisor is also going to make us a signing book which will be such a huge help to have at home too but for now I'll have to dash my hopes of instant soup results and learn how to take things one day at a time which is way easier said than done! 

    

Tuesday, November 6, 2012

ABA Therapy FINALLY!

Shortly after my last blog post we finally got a determination in the mail from the state medical review team. In Minnesota they are the ones that review all of the social security disability benefits to determine if you really have a disability that meets certain criteria. Our income is a little too high for Cade to receive the actual social security disability income benefits but they reviewed his medical diagnosis and all of the medical testing that he has had done (which is autism and expressive and receptive language disorder.) And determined that his medical conditions are severe enough to warrant him to be certified disabled from the state. While I am over the moon happy that this means he now receives state medical insurance that is automatically given to those with disabilities to help offset the cost of higher medical treatments; it is still heart wrenching to hear that yes his medical condition really is that disabling and will likely be life long. 

Anyways now that we finally got that piece of information and his new insurance we could finally get him started with ABA services! We have personal insurance through my husbands work and getting them to approve anything that costly seems to be harder than learning how to sprout wings and fly. Since we had been on the waiting list since juneish and had all of the paperwork filled out we were able to get him started right away. His first day was TODAY! 



Cades ABA services are provided outside of our home at the center above. We just thought that getting him outside of the house to do these services would be better than having someone come into our home. Cade is VERY attached to me and if I was at home it would be nothing but a disaster -- not to mention his older sister who is always jealous of him getting to see so many fun teachers and likes to try and help when they come by. :) The center provides parent training so we can become educated to provide ABA services with him at home and that is something that we are definitely going to be doing after they get to know him and develop their plan of action. The more hours that he can get the better off his future will look. 

As I mentioned he is very attached to mommy and no one but immediate family has ever watched him before so I was really nervous on how he would do at his first day. He must have remembered coming here last week when we met some of the therapists that would be working with him because as soon as we walked in the door he started crying and hiding behind me. I walked back with him for a few minutes and slowly edged my way out of the room when he was distracted. This would have made my daughter freak out when she was his age but with Cade really mommy being out of sight is out of mind and he did just fine the second I left. His supervisor promises that he didn't shed a single tear until I returned to pick him up and he felt like he needed to remind me how mad he was at me by shedding a few tears. Whatever they did to him they sure wore him out there. This was at the first set of stoplights I hit on our way home. 



Cade is going to the center 21 hours a week for therapy, and then receives weekly speech and occupational therapy and bi weekly physical therapy now that his physical therapist is back from maternity leave. The first week or two (longer if needed) will be spent with them just getting to know Cade and get him comfortable to coming there. They want him to be happy there and enjoy it or he isn't going to want to be compliant in doing what they ask/want him to do. After that point they will start actually implementing more of the therapy where he is sitting at the work table or the floor working with the therapists. ABA is kind of confusing and its hard to put into words exactly what they do because a lot of it really looks like play but really they are teaching him SO much. Alot of it is based on communication and attention. Teaching him signs/pecs/talking. But some of it is listening skills, helping his OT stuff, playing with him, physical coordination and balance it really doesn't just stop at behavior modification or repeating flashcards as it appeared when I first started researching. After the center gets to know him and develops a plan for him they provide parent training so we will be-able to implement this with him at home too. I am really so excited to get to see this little boy blossom with all of the wonderful therapies that he is receiving. I am so thankful to live in a state that has so many wonderful resources for special needs kids. While this isn't a diagnosis or a path I would have chosen for him his future is BRIGHT with everything that is available!

Friday, October 26, 2012

Medically Necessary. Is this a joke?

When you have a child with a medical condition or a disability you aren't prepared for a lot of things on your road ahead. One thing I never thought I would have to worry about is waiting for insurance to approve medical care that is clearly covered under our plan. After all, you go to the doctor to get a diagnosis and get recommendations. If the doctor prescribes a medication or service it should be common sense that it is in the best interest of the child or patient right?

Our private insurance came with a book that goes over things they cover and things they don't. Right there in the book it clearly states that they will cover $42,000 a year of ABA therapy services from a licensed agency/therapist. Sounds simple enough right? Well imagine my surprise when I go out to my mailbox and pull out a letter from our insurance company denying ABA services. Their reasoning was that they didn't get a comprehensive background check from the lead therapists that would be working with my son that the center sent FIVE times! This is private insurance we are talking about why exactly does their background check matter seeing that this is a licensed center? Why can't I get anyone to give me answers or return a call?  You take our $400 a month without batting an eye shouldn't that entitle me to a phone call.

To top it off the letter says at the end you can appeal this decision or send in the requested information upon receiving it we can then determine if these services are medically necessary. WHAT? First, our doctor prescribed these services -- they are proven to work and are recommend for children who have our diagnosis. Second, couldn't you find out if it would be qualified as a medically necessary service before you go as far to deny him for something as simple as a background check? Third, its written in black and white that it IS covered so obviously your company is aware that its a medically necessary service! Gah!

Don't even get me started on trying to get him disability insurance through the state! I applied in May its nearly November and we're still waiting. Maybe by the time he starts kindergarten he'll be approved for ABA therapy services. Sheesh!

Sunday, October 21, 2012

Vacations!

The word vacation can make any parent tremble. Most anyone who you ask (that will speak the truth or didn't have an amazing babysitter with them) will tell you that when they got back from their vacation they needed a vacation to recover from their vacation! When you add an Autistic child into the equation it can become even more of a stressful thing. This past weekend we stayed at a hotel a couple hours away with family which was hardly a vacation, but it was a trip away and hey who would say no to that!

Many if not most days, I completely forget that Cade has Autism. My daughter had no problem running into the hotel room and greeting her grandpa that she hadn't seen in months. My son on the other hand clung with a death grip to my husband until he felt comfortable that we weren't going anywhere. Any trip to the bathroom would make him burst into tears. Eventually he became comfortable enough to relax and have fun!

The pool was a whole other experience. I should say that my son loves water. If you say the word bath he will RUN to the bathtub before you can turn the water on. The pool through his eyes must have looked like a huge ocean with sharks swimming in circles around you. He looked at us like we were nuts for being in the water and he was not coming in under any circumstances. Being the mean mommy that I am I grabbed him and held tightly and started swinging him through the water trying to get him to see that it was okay and that the sharks wouldn't bite! (Yes he actually likes being swung around.) He was fine being in my arms but the look on his face when I tried to pass him off to my husband you would have thought I was feeding him to a shark. Eventually he realized that both mommy and daddy weren't going to let anything happen to him. For a little boy who was SO scared of the water he sure did have a great time -- even jumping off of the edge of the pool 10 million times! As much as he ended up liking the pool he loved the hot tub even more. He said bubble a few weeks ago and I completely forgot about it until the jets turned on and he started squealing bubble bubble!

We could only be in the pool and hot tub for so many hours before we would have shriveled up completely and we wanted to pack in as much fun as possible so we took the kids to this huge indoor bowling center/arcade place. We take Cade out all the time and he usually is an awesome little boy but in retrospect I think he probably could have used a nap before we went anywhere else! (Heck we could have all used a nap!) He crawled up the ski-ball machine, clung onto another parents leg (not every man with a beard is daddy LOL), tried to "help" the other kids who were playing their games, and then ran half way down the bowling lane as my husband rushed after him and mean mom made him go in time out. It was about this point that I was reminded that my son has Autism. The lady behind the counter where you get your shoes looked horrified. I'm not sure if she was horrified that I let him run around when he was so naughty, was mean to him and instead of immediately leaving made him sit in time out so his sister could finish, or what exactly her thoughts were but if looks could talk YIKES! As soon as my daughter finished her turns we did leave but unless if he was uncontrollable or didn't calm down I am not going to make her miss out completely on his behavior, and Autism or not he needs a consequence for his decisions because he does understand the word NO, and if we had waited until we got to the car or back "home" he would have no idea what we were scolding him about. It was about this point that I started thinking about the kids who throw tantrums while their parents are trying to shop and you know we've all thought it in our heads. Oh give the kid that candy bar, or let them ride that ride, gosh those parents should control their kid -- if that was my kid they wouldn't be acting like that. You know what sometimes its not that easy and unless you've walked a mile in that persons shoes you have no idea. Plus if everyone who had a child that has ever acted up in public stayed home out of fear their child would misbehave, I can guarantee not too many people would be outside of their house!

After a much needed nap (for all of us) we had a great dinner in public tantrum free, a great mini vacation, and while I'm not booking tickets to Disney World quite yet, we're not taking it off the bucket list either!