2/23/09 Update

We took this picture last summer but I had forgotten about it until I found it on a thumb drive recently.. I just love that it makes Tyler look like a giant!

Ok onto the main issue this winter... health! Somehow I managed to avoid the bronchitis that affliced Ben, Tyler and Steve. Ben seems to be the one have the hardest time recovering. He was still running a slight fever on Saturday but luckily nothing yesterday. We are really hoping this is the end of it for a while, we all could use a break and would really like to get back to our normal life and enjoy family time together rather than being in survival mode.

Tyler continues to pick up new signs. Finally got a clear "all done" out of him after dinner although he does it upside down. I've sent a message to school asking if they can help us clean up this sign while he's at school too. HE also started signing for "help" this weekend. He still requires a prompt, i.e. I say "do you need help" and sign help then he signs it. I really like this sign as I hope it begins to use this rather than the handpull he uses now.

I thought I would take a moment to reflect on the last year. One of the reasons i love this blog is that I can go back and look at previous entries compared to now and see just how far Tyler has come. I looked at blogs from January/February in 08 and at that time, Tyler had no signs at all, he was resisting being put in his booster chair. he was not feeding himself or intersetd in feeding himself, he would bang his head and drop food/cups, etc. over the side of the table. He was banging his head on the floor when he was frustrated. Compared to now.. I would say Tyler has and uses at least 20 - 25 signs regularly. Example: we were playing with a train gthis weekend and I split the cars so Ben would have some and Tyler would ahve some and he wasn't happy about this at all and started signing "train" to me pretty feverishly.. I felt bad that he was asking for something I couldn't give him but this is a strong enough sign for him that I don't have to reinforce it each time to get it to stick and i figured Ben deserved turns too :) Oh I'm gettign off track. So he signs now, he willingly sits in his chair at the table. In fact, there are times that Ben and I will be at the table coloring and Tyler will be playing with something else in the living room and then he'll come to the table with a puzzle or toy and ask to be lifted in his chair (by saying 'uh" or lifing his arms in an "up" motion). it's great that he really wants to be around us now and especially that he watns to be put in his chair cause he used to hate it. He also wants to be with us in the kitchen. whenever i'm in the kitchen cooking, Tyler will bring whatever toy he wants to play with and come in and hang out with me. It
s just so wonderful that he wants to be a part of our lives as he didn't used to care who he was around.

I think that's about it for today. So our little giant has come so far and he has giant steps to take in the future but slowly/surely he's getting it. I can't even remember the last time he banged his head out of frustration.. the more he learns ways to communicate with us, the less and less frustrated he will be.

2/18/09

There isn't much new news to report. Everyone is still recovering and we are keeping Tyler home from school one more day to make sure he's not contagious so that's about all on that end.

I suscribe to google news articles so anything that has the words autism and recovery in the article is automatically emailed to me each day. Anyway, there was an article about the cost of autism and I thought it would be perfect to put in the blog. It sums up very well what I often stumble to say which is.. there is no cost to high for the difference it can make long term.

Article:

My son Max is the "million dollar man." In the ten years since he was diagnosed, he’s had one million dollars worth of therapy and treatments. One Million Dollars. Wow! Did I have a million dollars to spend on him just sitting around in the bank? No. Not even close. If you are reading this, I bet you don’t either.

When he was diagnosed, the doctor told me he’d never speak again, do math, be potty trained, have relationships and care about people, that he would injure himself and others and would never improve or be able to even live at home. I was devastated.

Thankfully, with therapy and treatment, we proved that doctor very wrong and my son is a thriving, lovely boy. These therapies and treatments have benefitted him so much and changed his outlook for a long healthy, happy, functioning life. My son deserved every dollar of it. So does your child!

Why is Treating Autism Important From the Traditional Intervention and Biomedical Perspective?

It is important because autism is diagnosed so young and CAN affect individual’s life long, but does NOT affect the life span of an individual. We know from best practices that treatment is important and is altering outcomes for individuals affected.

If we treat autism spectrum disorders based on their unique biomedical and traditional therapy needs – the life long estimated costs for an individual from $3-7 million dollars may be changed from being an expense to becoming a tax payer. There are children that recover from autism and that will go on to lead normal lives.

This data is still emerging. The CDC reports that 80% of those affected with autism are UNDER the age of 17 years. We owe it to these children, and their families, to not ignore the “problem” but to treat it like in any other disorder. These guidelines outline one responsible party (just health insurance) in what should be required by law.

Parents need to use their best judgment, information, state and federal laws to help their children become the best they can be – with the hope of recovery and the possibility of becoming a taxpayer. After all – that is our job as a parent.

Sure, there is a lot to learn when your child is diagnosed. First you get to learn about the disorder itself, then learn about the many confusing treatments and approaches, then try to guess which ones will benefit your particular child and lastly you get to figure out how to pay for it all. The process can get overwhelming very quickly.

I emptied all of our savings, 401K, filled credit cards to their limits and borrowed money from relatives to help my son. Eventually, there was no money left and no one else from which to borrow anymore. That’s why I wrote this article – to give you the tools so you don’t have to do what I, and thousands of other families, did. Getting companies to cover what your child needs can be difficult, very difficult at times, but not impossible.

Why Should I Bother Learning All of This?

Speech Therapy costs:

-- $75 per 30 minute session, 3 times a week for 50 weeks a year = $11,250

Occupational Therapy costs:

-- $75 per 30 minute session, 3 times a week for 50 weeks a year = $11,250

ABA Therapy costs:

-- $120 per hour for BCBA to oversee program, 10 hours a month, 12 months a year = $14,400 plus $30 per hour for 1:1 therapist, 30 hours a week for 50 weeks a year $45,000 (not to mention materials)

Bottom Line:

-- $81,900 per year per child will break the bank!

Getting your insurance company to pay their share will allow your child a real chance at a future and you shouldn’t have to lose everything to do it.

You should not be going broke treating your child with autism. This article aims to shed some light on the process and help you navigate the system to get your child the help s/he needs. This is not meant to serve as legal or medical advice and is NO guarantee of coverage, but I hope it will arm you with some information to help you help your child.? Good Luck!

2/17/09

it looks like everyone is starting to be on the mend.. yahoo! We are gonna keep Tyler home from school one more day to make sure he's not contagious.. i read on the CDC website that the flu is contagious for 5 days after the onset of symptoms.. we dont' want to keep spreading it that's for sure.

I'm not sure if you are aware but OCD (obsessive compulsive disorder) is a common behavior for many with autism. Obviously repetative behaviors is at trait that Tyler exhbits, i.e. spinning but I've never noticed him to have anything that I would consider to fall under the OCD category until this weekend. Ben and Tyler and I were going to head up stairs to take a bath. Tyler understands the "let's go upstairs" phrase and he also understands bath and the sign for bath.. in fact, he requested bath last night. so cute. Sorry, got off track. SO Ben and I were at the gate at the bottom of the stairs and Tyler was playing with his piano which is right there too. He went to leave his piano but then looked back like oh.. shoot I didn't do it right.. then he went to walk away again but you could actually see him hit the wrong key, his finger slid so he looked back and sat down and you could see the struggle going on.. he knew he needed to go take a bath yet, his mind would not let him leave until he did whatever it was he needed to do on the computer. Poor thing.. what an awful way to feel. I haven't figured out what the sequence is yet but when I do, I'll help him break it so he doesn't have to do it all the time and so it doesn't get worse. I just found it interesting as I've not noticed any OCD behavior before.

Oh and yesterday, Tyler did something else new and it was really great. I was changing Ben's diaper yesterday morning after he had gotten up. Tyler had already been up for a bit and already had a glass of milk (rice milk of course). as I was changing Ben's diaper, Tyler come over, hands me his cup and signs "milk"... yahooooooooooooooooooooooooooooo.. The only time he's signed milk or even requested a drink appropriately is when prompted by us holding the cup out of his reach so he has to ask for it.. now he did it when he wanted something to drink. Hallelujeah! The boy can now request to eat and drink if he's hungry or thirsty. Sometimes I read back as I'm writing a blog and think how strange it must be to everyone to read the things i get excited about compared to what a parent of a typical kid gets excited about. Ha.. so what. the kid asked for a drink. big deal.. to me.. IT WAS A HUGE DEAL. In fact.. I left Ben there on the carpet, no diaper (potty training got postponed due to flu) and ran to get Tyler some milk right away, you rock kid!

Ben is super cute, his language is just so developed, it's amazing how much of an adult conversation you can have with the kid. Let's see.. in the mist of me being sick with the flu he said out of the blue "mommy, you are so beautiful"... ahhhhh.. and then yesterday when I was making dinner and he was playing with bubbles in the sink, he said, "isn't that so ridiculous". I'm not sure what he was talking about but it was funny. It's also a hoot when he realizes one word has two meanings, i.e. bank of a river and bank that holds money or even funnier when there are two words that he thinks are the same, i.e. penis and venus. He told me his penis is just like the planet. I laughed so hard. Oh and he offerred to read Tyler a book the other day when I was holding Ty cause he was not feeling well at all. He's also starting to really connect with the info I tell him about TYler's autism. Ben asks "why" for everything and I try to be patient and give him as many answers as I can cause how else will he learn. anyway, he often asks why he can't flick his fingers when he has crumbs on them or what he can't get down and play w/o washing his hands so I tell him about Tyler's autism. he's starting to answer the question for himself now instead of saying why.. if i say, Tyler can't do that or Tyler can't have it, he'll say, "cause Tyler has autism?". I'll say yeah baby, cause Tyler has autism. Then he'll say, why does Tyler have autism? Well that's one I don't have an answer to so I just say I don't know.

We haven't been able to plan much for the boys birthday due to all the sickness we've been dealing with but hope to have something soon. we were hoping to have it somewhere that TYler would have something to do that was safe and fun and non-chaotic so he could be part of the party too but not be overwhelmed and expected to sit still and open presents. everythign we think of is just turning out to eb super expensive or open to the public which on weekends may be too much for him so we are still in the process of thinking....

Happy Valentines Day!!

I know it's been a while since I've posted but once again illness has got our family down and I wish I had good news to report but I don't. Ben was home all week with the flu, fever, cough, vomiting, etc. except for Friday. Tuesday night Steve started getting sick but he just had the cold symptoms. Tyler has had a runny nose and couch ever since the norovirus and I felt like he and I were just getting better when Ben started running a fever last weekend. Ben was sick from Saturday to Friday and really just seems 100% today with his eating, etc. He also had to deal with his first cankor sore during that time so it wasn't fun. By wednesday night Mom started getting sick with vomiting, fever, etc. already had the cold symptoms. So today the first day that Ben really feels like himself, Tyler's cough is terrible and his nose is draining constantly and he's running a fever of over 101... I'm not sure it will ever end.. we just keep passing stuff around and believe me we all take vitamins... and Tyler takes a ton obviously.. we wash our hands and their hands religiously. I find some peace in knowing that most of the people around us are also sick so it's not just our familiy but sometime it feels like this darn winter will never end. I'm still not able to eat much or stay awake for significantly long periods of time. So far Tyler seems to be acting ok not too sick so hopefully he'll be better by Monday, he has an evaluation at U of M that day. Thank goodness we weren't all this sick last winter or we never would have made so much progress on the study, having to cancel all the time.

So on to progress.. no additional words at school this week, however, on Friday when I picked the boys up from daycare, Tyler said bye-bye to Karen. I didn't hear it (of course!!) cause I was taking Ben out to the car at that time but she said he said it as clear as day, woohoo. He's also signing very well. Maybe if he's fever is gone tomorrow, I'll try to catch a little of it on video. I hate placing too many demands when he's not feeling well. We have puzzles that make noise when you put the puzzle piece in. The ones we have been working on her transportation and animals. On the transportation puzzle, he'll sign for the airplane, train, car, and boat puzzle pieces..and on the animals we are still trying to clean up those signs. He knows most of them but sometimes scrolls through to find the right one or puts his hand in the general proximity he is supposed to for the sign but then doesn't actually make the hand configuration correctly. So we've been working on puzzle pieces a lot this weekend when we have time. He's coughing so much we are trying to keep him sitting and playing rather than running around.

well that's all from us.. not sure when I'll be able to get on the computer again.. so here's wishing us health or an early summer. wouldn't it be great if it were in the 60s next week and stayed that way until summer...ahhhh

2/5/09 Fantastic News & Video

sorry about the quality of the video as I had to convert it to upload and the quality sufferred a bit. But as you can see, Tyler is riding a bike and steering very well! At the times you see him stop or get distracted, it's when he's going by the windows in the school. The windows also distract him when we pick him up frmo school. he loves to look out big windows!

We had a meeting with Tyler's teacher today to go over Tyler's progress towards his IEP goals as well as getting her general feedback as to how he's doing and everything was great! I think the best piece of news we got was how much progress he's made in such a short time and how quickly he picks up on things which is a good indicator of how well he'll progress in the future. There was also some good news on the speech pathologist front, i don't have all the details but in general they are getting a new speech pathologist but she was already working with the kids in other avenues and she's considerd an expert in many areas so this is really gonna be a bonus for Tyler. I'll write more some other time when I have more info.

In today's meeting, the teacher mentioned that she's noticed that Tyler's sounds/babbling has descreased. I said it was funny she mentioned it cause I had just written that in his blog. But she confirmed my suspicions that it's very common when a child picks up a new skill, some of their old skills may go away for a while. Also, eh's learning that signing and gestures are getting him what he wants so they are reinforcing. I did talk with her about how to know when we can start to hold out for specific sounds for things as well as signs as to push it to the next level, this is something that we'll talk about to his new speech path as well. Which brings me to the next pieces of news. SO EXCITING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

TYLER TALKED TODAY! The only time he's ever said any distinguished word other than mama and dada (which is also not so clear lately) was when he repeated I love you on video which was only a repetition, not somethign that had meaning and it wasn't very clear. Today.. he said "get in" twice in a row!! He was with one of the paraproffessinoals and htey were standing by the swing and he said, get in.. Oh.. I tear up thinking about it. WOO HOOOO... So now we want to really reinforce that phrase so we'll be trying to get him to say it anytime he wants to get into anything and maybe we can even get him to say "put in" as I know he can make the "pu" sound. Oh........so weird i Just talked about hwo badly I wanted him to be able to talk. yeah tyler. They also said he was really making a lot of sounds today. Our mtg with the teacher was right after we dropped Tyler off so it's almost that he knew we were talking abouth im and saying how his speech has dropped off and how much we want to up the ante on speech and get him talking. YEAH TYler!

2/4/09

Back to the discussion about communicating with Tyler, it's important to remember that although Tyler cannot verbally communicate, it does not mean that he can receive/understand verbal communication. Tyler has well established receptive language and although it's easy to forget to talk to him/reason with him since he cannot verbally talk back, I promise you, he understands a lot. Example: When I dropped him off at daycare the other day, he was playing with some of the princess playset plates. Plates, coasters, frisbees, etc. are Tyler's idea of heaven, cause he can spin them on the hardwood floors, his stim. Anyway, he was doing this while I was talking to the daycare provider and the daughter of the daycare provider, who is 4, wanted to play with the plates too. She grabbed a couple and staretd to play.. Tyler looked at her and clenches his teeth (first sign of frustration and if not remedied can easily turn into biting the other person or head banging. The daycare provider asked her daughter not to take them away from Tyler, however, I see that there are around 10 plates and plenty to share between 2 people. By now, she has given the plates back to Tyler but then re-taken them and moved a bit further away from Tyler (smart girl, stay away from boy who bites, ha ha!!). Tyler then walks over to her and leans down and is visibly frustrating and makes a whiny frustrated noise. I get down to Tyler's level and explain to him that the two plates that she has are hers to play with and then I point (use lots of gestures) to the remaning assortment of plates and say, those are Tyler's plates. Then I reiterate one more time, by pointing, where her plates are vs. where his plates are and grabbed his hand to walk back to his plates. He was completely fine with this situatino and went back to playing with his platse without any argument, yeah! He totally understood what I was explaining to him and accepted it, even if it wasn't the most desirable outcome for him. Anyway, just wanted to make sure everyone knew that it's totaly possible to talk to Tyler and have him understand what you are saying even if you aren't using signs to talk to him, although they do help. The other day, Tyler was frustrated about dinner and I can't remember exactly what it was that was bothering him but seve said something about "having dinner" and then one other phrase and then I said to him "sign eat".. as soon as he signed eat, Tyler knew exactyl what was happening went to the table to eat and stopped making his frustrating noises.. so both definetly help in some situations but it doesn't mean that he doesn't understand words.


On another note.. here's an update to the story I posted a while back about that family with the out of control 13 year old girl and how much a week of intensive ABA therapy has changed their life. It really really works, why on gods green earth can we not have insurance cover the costs, sigh. We live and breathe ABA in our household..even for Ben. It has helped us on so many levels. Steve has been really frustrated lately with Ben and his eating issues (too long of a story to get into) and we talked about it and had a plan in place (based upon ABA principles) and last night I was not there for dinner and Steve got Ben to eat all of his dinner!! One of the things Ben loves to do is look at dinosaurs (pictuese) on daddy's computer. There is somethign called the ABC's of behavioral analysis. A is hte antecedent or what happens before the behavior, B is the behavior and C is the consequence. Well the antecedent was that Ben was able to look at dinosaurs when dad would cook dinner. Then it wold be time for dinner so Ben was expected to eat and thenw ould exhibit a not so pleasant behavior of taking about one bite nad refusing ot eat anything more or anything new and the consequence was ok, then you can get down and go play and dad was left incredibly frustrating and Ben was incredibly hungry then righ tbefore bed. So not only was Ben having to stop something he loved doing to eat which is somethign he doesn't love doing, but then the consequence was then you don't have to eat. So we had to change both the antecedent and the consequence. (By the way, there are many moer issues regarding his eating other than this one example). We no longer let Ben look at dinosaurs before eating so that he doesn't have to stop doing something that is so fun and then see eating as a punishment. We reward Ben for eating all of his food by letting him then look at dinosaurs on the computer and if he tries new food, he can get either a jelly bean or fruit snacks as a reward. We make sure to put smal portions on his plate to help set him up for success and then of course will give him more food after he's eaten it all if he wants it but this way, he continues to get positive reinforcement for eating rather than all the negative attention he was getting for not eating. It's eliminating a bunch of frustration and wasted food in our house. He's never allowed to have any snacks at night uniless he first finishes his dinner, yes we save it if he hasn't eaten it and then if he wants a snack, he'll eat his dinner and then get a snack. Happend the oter night. we are trying to get him to eat new food, so he had a PB&J for dinner (far from a favorite)and didn't finish it. No problem. Then asked for snacks so I said sure, let's finish your dinner first. So he finished his PB&J that we had saved and then he was able to get the 5 cheetos which is what he wanted. worked like a charm and he had no resistance to the rule at all. It just takse the initial patience and consistency for the parents to make it through the establishing of the rule, and once it's in place, it's very easy for the most part to continue enforcing it.

http://www.cnn.com/2009/HEALTH/02/04/autism.resolution/index.html

2/3/09

Everytime I pick up Tyler for school, they tell me how great he's doing, how happy he is, and that it's so much fun to see how far he's come already. I'm not sure if this is the type of response they get from all kids and therefore give the parents or if our little guy is doing exceptionally well for how long he's been there, but either way, it's hard to leave there feeling anything other than satisifcation knowing that making the change was the best thing for Tyler. Yesterday the teacher told me that Tyler was going to play with a toy when he heard the music that indicating the beginning of cirle time and he came running for circle time. He used to be just be so focused now hat he'd want to do, you'd have to go physically get him if you wanted him to do something new. He's also trying so many more food types and touching his food. Today he touched his mandarin oranges. I'm not aware of all the steps to list them but food group time exposes kids, especially with sensory issues, to new foods through a long process that eventually has them touch it to their mouth. But it spends a lot of tim ejust exposing them to the food first before they have to put it in their mouth. Tyler is touching a lot of his food now which is great!

i'm also really happy with how well his signing is coming along. He signed "squirrel" spontaneously the other day when he was in teh kitchen and in the living room baby sitning time was on and the squirrel part was cmoing up, Tyler recogonized the music from the other room and started signign squirrel.. smart guy. Many parents of kids with autism will report that when one area advanced with their child, they may see regression in another area. It may be just my imagination but I've noticed a lot less babbling in Tyler recently. However, he's learning to communicate with his hands right now so he may be focusing all his energy there. They say once one skill then gets mastered the other comes back. As TYler approaches his 3rd birthday, I'm really hoping that very soon, our little guy will start talking, even if it's just random words here and there. I'm ready to hear his cute little voice. Which brings me to teh next subject.

Anyone that works with or plays with Tyler, needs to make sure they are on his level when playing with him or speaking with him or asking him to do something. It's really important that if TYler wants to talk to someone or get their attention that his hands are visible so he can communicate effectively, rather than by using behavior to communicate. Example...Dad picked Tyler up from school the other day. He asked the parapro was kind of bike Tyler was riding. They both concluded that it would be too confusing for Tyler to walk back with them to the class to get the bike so dad and tyler waited while the parapro went to get it. Dad did a great job of occupying tyler while she was away. it's hard for Tyler to understand why he wasn't leaving for the car when that's what he normally does every day after school. Once the parapro came back, Dad was holding Tyler's hand and talking to the parpro.. Tyler started acting up a bit and pulling on dad's hand. Dad kept saying..one minute Tyler and lookin gback at the parapro and talking. After he told me this story we both had the "ah hah" moment of.. we need to make sure that since he only talks with his hands that we are able to see his hands when we are asking him to do something that isn't "normal" for him. Tyler didnt' understand why he was waiting and he also didn't have anything to do to occupy his time and dad was standing up so he couldnt' see if Tyler was trying to talk with his hands so tyler was acting out and pulling on dad to say.. hey, why aren't we going? in that situation, when we have nothign to occupy Tyler's attention, and it's out of the normal routine, we decided it would be best to tell Tyler what is happening and then pick him up so he can be at eye level with us as we finish teh conversation. That way if he is trying to use his hands to communicate, we can see it right away and reinforce that communication, rather than reinforcing the other not so pleasant behavior. So for everyone that works with TYler or has any expectations of him... make sure you are always watching for him to be talkign to you with his hands.. even if you dno't know what it means and we are trying to share as much as possible about the signs, at least you know he's signing something so you can try to figure out what it is he wants or is trying to say.

I think that's all for now.. we have our parent meeting on Thursday and I'm hoping to have lots of good news after that.

2/2/09 Worst Winter Ever

So although school is doing a tremendous amount of good for Tyler, it's also making him sick more often and therefore our family gets sick more often. Yes, we are sick again! Tyler had a bit of a runny nose this week but seemed fine.. I started feeling run down on Friday night/saturday and then yesterday Tyler started to seem more run downt han normal. So that's the way it usually works, Tyler gets something, gives it to me.. then Ben gets it and then Dad. Sigh. We had one week of normal health in our house. Can't wait for spring!

So anyway, here is a link to another good recovery story. What I love about this story is that this family didn't even get a diagnosis until their son was 4, i.e. we had an amazing head start, beginning speech with Tyler at 13 months. Anyway, years later, their son no longer fits an autism diagnosis.. one can only hope that will be the ending to Tyler's story.

http://thirning.blogspot.com/2009/01/great-biomed-success-story.html


Oh, even though Tyler isn't feeling himself, he's still eating like a champ! THis weekend he found a chip on the kitchen floor and put it in his mouth, i quickly raced over to see what it was, in case it wasn't a gfcf treat and thankfully it was although I still did not let him eat it. So now, since he's interested in eating and will do so on his own, we need to be extra careful of Ben's food, and leaving his bowls/platse unattended, etc. to be sure that Tyler doesn't get his hand into something he isn't supposed to have.

Hopefully we'll all be healthy by this weekend as one of the autism groups is putting together an event on saturday at our local inflatable place. The boy slove it there so we are planning on attending if we are healthy, dont' wanna get the other kids sick.