Carly

I watched this 20/20 episode on Friday and couldn’t believe what I was seeing! This young girl Carly is severely autistic and somehow starts communicating through typing. The things she starts to reveil are AMAZING! PLEASE watch!

Warning; video may cause tearing up.

Autistic Teen Finds Inner Voice

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Exciting news!

We got some very exciting news this week that I wanted to share! As I have mentioned before Jonas will be going to school in September once he turns 3. He is currently getting services through early steps which has been GREAT however it ends once they turn 3 because the school systems take over at that point. Anyway we had two options for school one is the public school which offers a program for all children with special needs. Every child with any kind of developmental delay is accepted no matter what. This would have been fine but not ideal. The other option was Renaissance Learning Center which is a school specifically for autism. The classroom’s have 2 teachers (special education teacher and a speech therapist) for a classroom of 5 kids total. This was by far what we wanted for Jonas. However, they have a year long waiting list and they choose children through a lottery system. This year they only had 3 spots available! I was sure it wasn’t going to happen. GUESS WHAT??!! He got in! I received the call the other day while I was grocery shopping. I screamed, got a bunch of crazy looks, but could not have cared less because I was SO EXCITED!!! Praise Jesus!!!!! I was however a little sad to think of the countless moms in this area that did not get that call. My heart goes out to them because honestly it would have been so difficult for me to send Jonas to the public school knowing he wasn’t getting the best education available. I think it is so WRONG that there aren’t more programs available to accommodate the growing population of children with Autism.

Autism, its not what you think

This is a common saying amongst the autism community. The first time I heard it, I was immediately struck by how true this statement really IS. For me I think this statement has more meaning than the intended message. I feel like Autism is misunderstood in more ways than one. Have I confused you yet?  What I am saying is that yes many people think Autism is this awful “plague” that makes your child rock in the corner or that they have “special talents” (read here for more explanation on that) which is most likely who this saying is aimed at. I think there is a definite lack of awareness out there which can be frustrating sometimes but I also think this saying also goes for an entirely different population of people out there that think its no big deal or that it will probably go away which can be just as, if not more, frustrating. Don’t get me wrong, I think there is alot of EXCELLENT resources out there and that there is SO MUCH potential for Jonas to one day function as a typical child/adult and I think that most people just like to “stay positive” and maybe this is just the pessimist in me talking but sometimes it’s just plain hard to have a child with Autism and I don’t know if he will improve…no-one does. There are soooo many stories out there of children that were autistic and are now completely normal or are autistic and still at the age of 20 do not talk. I think the saying should be Autism its not what you think…because every child is so completely different from the next. I would love it if somebody could tell me don’t worry my son looked, talked and acted EXACTLY like yours does and now he is perfectly fine but that is not going to happen. I hope I am not coming across really negative cause that is not my intention for writing this. I actually think that this whole thought process has helped me to be more accepting of Jonas’ autism. I think it is important for me to accept Jonas for who he is right now. Not for who he may or may not become. Again, don’t get me wrong I fully intend to stay focused on his therapy and whatever else he needs but I do not want to get so obsessed with “making him normal” that I end up raising a son that thinks his mother doesn’t love him for who he is. I have said it more than once on my blog that I would love nothing more than to hear my son call me mom but if he never does I HAVE to be ok with that. Believe me its a work in progress, somedays I am faced with some harsh realizations of things I may never get to do or experience with my son that literally take my breath away and I find myself fighting back tears because it is often in public or in a social situation of some kind. I am also completely aware that some people NEED to stay focused on their child’s therapy in order to deal with their child having autism and that’s ok because that’s what works for them. However, I have always been the sort of person that doesn’t like to hope because the disappointment is to difficult to bear and in most cases that isn’t good but in this case in a weird sort of way it works because even though there will most likely be some disappointment’s along the way, Jonas will never be a disappointment to me as long as I don’t get bogged down with my ideas of who I want him to be…

 

…(sigh) that felt good. 

goodnight.

Cause I felt like it…

Just some stuff I felt like writing about

I’m nervous about working nights, I don’t think my body can handle it, I am not, nor have I ever been a nap person. that’s right I don’t take naps!

I used to think those people at disney world that make their autistic children wear t-shirts that say “i’m autistic please be patient with me” were weird but lately I’ve been thinking about getting Jonas a t-shirt that says “i’m autistic and you don’t have to feel bad about it” or “i’m autistic and I like mulch so get over it!” or “i’m autistic and yes my mom is aware that there are alot of special programs available for children like me” (although i think that last one might be hard to fit on a 2T t-shirt)

I have a love/hate relationship with moving/packing. I hate cardboard. I hate newspaper ink all over my hands. I hate carrying boxes from one place to another. However, I love getting rid of things. I love organizing.  I love starting fresh.

I am so not ready for bathing suit season. sigh.

I went to the dr. the other day and she found a lump on my back that she wants to ultrasound. I am about 99% sure it’s nothing but it just made me feel old. 

I have considered getting pregnant again just for some new photography material, jk…sorta  

I had to have a root canal the other day. I hate the dentist. This might sound crazy but I have this fear that while they are working on me I will start choking on my saliva cause the assistant forgets to suction me and I will choke to death cause I can’t talk to warn them. I know…completely irrational but it goes through my head.

I started using wheat pasta this week and I can’t tell the difference at all! I totally thought I wouldn’t like it.

I am writing this instead of going to bed early which is just plain silly but I figured I would have just laid in bed and thought about what I wanted to write in this post for 20 minutes anyway so…

We’re getting there.

Jonas is doing really well these days. He continues to progress and learn each week and we are so proud of our little guys progress. One thing that he has struggled with was learning signs. He has done amazing with PECS but for some reason signing didn’t go as well. However, he has made some real progress lately with signing. He has learned the sign for open and is currently working on the sign for swing, drink and eat. I wanted to show this clip of him learning the sign for eat!

Another proud parenting moment….

….caught on tape

more about ““, posted with vodpod

If you missed parenting part 1 you can catch it HERE

Stuff we are working on.

I wanted to make a little list of the stuff we are working on in Jonas’ therapy. This is more for me because I think in a couple months it will help me gauge his progress. I know that he is learning more and more everyday but I think because I am with him everyday I start to doubt the amount of progress he is actually making.

1. Require him (using hand over hand) to use the sign for open whenever he wants to go out or use any door and when he wants his snack container opened.
2. Require him (also hand over hand) to point when he wants:  his sippy cup, to get on the swing at the park, or to have his toy containers opened (we keep his toys in clear bins separated by category: blocks, trucks, etc. to encourage him to communicate in order to get them) It started with just requiring eye contact now we are adding the pointing. This also means that once he his done I have to make sure the container is put up before moving on otherwise he will lose motivation to have them opened when he knows he can just play with something else. It’s ALL about MOTIVATION with toddlers!
3. Practice each PECS at least once a day. We are now up to 11 PECS!! Play-dough (of course), his toy piano, his ring stacker, bubbles (video of this coming soon), cookies, crackers, Maisy book, his globe toy, blocks, to watch Little Einstein, & popcorn. Some of these are done like play-dough in that he has to give you the card repeatedly during the activity others he only gives the card once and then gets the item such as the ring stacker or watching Einsteins.
4. Teaching him the concept of “first this, then that.” Jonas likes to eat fruit and yogurt but not so much the protein portion of his meal but I can’t tell him if you eat your chicken you’ll get some strawberries so we are starting to bring out the fruit when he is eating his meat and showing him that he can get it when he eats his fruit. Basically when he reaches for it we direct him to the meat and as soon (like immediately) as he eats the bite of meat he gets a bite of fruit. We will see how it goes!
5. And as for me I am trying to recognize other opportunities throughout the day to encourage him to communicate that I don’t have written down. It is so easy for me to go about my daily routine and completely miss perfectly good opportunities to have him point or make eye contact to get something he wants. I get so used to anticipating his needs but I really need to just stop that because it’s not going to help him in the long run!

That’s it for now hopefully my next report will be that he is pointing and signing without prompting and that I will have a whole new list of daily strategies to work on!

And just cause I can’t resist an opportunity to post a picture of Jonas, here he his doing his bubbles PECS.

Did that just happen?

An actual conversation I had standing in line at the supermarket the other day….

Clueless Lady: “Oh your son is so cute, beautiful eyes, how old is he?”

Me: “He’s 2 1/2″

Clueless Lady: “Oh, 2 1/2  doesn’t he talk yet?”

(at this point I could have just said that he just doesn’t yet but for some reason the lady was annoying me and since telling people the truth tends to make people feel bad, even though it shouldn’t, I decided to tell her the truth)

Me: ” Actually he is autistic”

Clueless Lady: “Oh, so does he have a special talent…don’t they have special talents” (Obviously telling the truth did not have the desired effect)

Me: “Do you mean like Rainman?” 

Clueless Lady: “Yeah”

Me: “Um, he has lots of talents”

Clueless Lady: “Oh”

I walked away thinking OMG was that lady for real!!! But then I thought well it’s great blogging material

For your viewing pleasure…

WARNING PLEASE READ BEFORE WATCHING:  This video may contain content that could be perceived as rude or insensitive but please don’t send me mean comments. I find that when you have a child with special needs you just gotta learn not to take life so seriously all the time.  I am also posting this because if you know my husband you know that this is just a classic Brian moment and I couldn’t resist!

Courage

A friend was telling me the other day that courage can be used as a synonym for resolution,  I am not sure if that’s really true but it sounded good.

So in 2009 I am going try to have the courage to:

• Let go of my need to control everything and remember WHO is really in charge.
• Let Jonas struggle (I am working on not anticipating his every need in order to help him feel motivated to communicate)
• Step out of my comfort zone by participating in things that I would normally just find a reason to stay home.
• Establish and stick to a daily routine with Jonas to stay consistent with his therapy.
• Get OUTSIDE and MOVE more!!!
• Cook healthier meals  
• Be the best nurse I can be!!!
• Pray more.
• Have more confidence in my abilities and talents.
• Forgive myself once and awhile (I think that when you become a mom you get really good at serving yourself a big old helping of guilt every morning…can I get an Amen!)
• HAVE FUN!!!!

Wishing all of you lots of COURAGE in the new year!!!!!!