Autism 101

Autism is a spectrum of disorders ranging from severe autism, to Asperger's Syndrome (sometimes referred to as High Functioning Autism). The spectrum contains such disorders as PDD-NOS,Childhood Disintigrative Disorder, and Fragile X Syndrome. Autism is not discriminating. It affects children of all races and genders. It is most common for a child to develop normally up to about 16mos and then begin to regress, losing skills that had once been mastered. The core of the disorder lies within the social deficits. Some of the signs to watch out for are:

Reduction or absence of eye contact, facial expressions, and/or body language

Inability to form friendships within a peer group
Unwillingness or inability to share enjoyment or accomplishments with others(in a young child, never brings you toys..never points to things of interest)
Inability to relate and share emotions on a social level

There is also a communication deficit. Now; those with Asperger's Syndrome often do speak within a normal time frame and often are ahead of peers with regards to being able to speak. The difference lies in HOW they talk. Some of the communication signs are:
Reduction, absence, or loss of expressive (spoken) language Nick lost his only word "Ma-Ma" by the time he was two; and was completely silent.
No attempt to replace language with another method of communication
Inability to converse with another person even if speech is present
Repetitive use of words, or echolalia
To see an example of echolalia click here
Absence of imaginitive play typical to a specific age group
Although, kids with ASD(Autism Spectrum Disorder) often love to play games such as "peek-a-boo", and "chase"; which can lead one into believing they could not be autistic. These games are loved because they are predictable, and there is not much change in these games. They become comfortable.

The last area is one that is very characteristic of individuals on the spectrum. It is the patterns of behavior or interests.
The patterns of behavior in a child with ASD are very distinctive and are a indicator of where the child falls on the spectrum.

Intense preoccupation with a particular activity
Compulsive engagement in routines that serve no practical purpose
Repetitive movements such as flapping, spinning, and/or body movements
Here you can see Nick flapping
Intense preoccupation with parts of a whole-for example, the spinning wheels on a toy car rather than the whole car.

In this picture, you can see Nick spinning the wheel on his toy.

All disorders on the ASD spectrum do show some degree of OCD (Obsessive Compulsive Disorder) Nicholas flicks light switches off and on. This may seem trivial in our home, but when you think that nearly every public place has light switches, you can see where this can be a problem. Nick has a complete melt down when he cannot do this in public, which leads him to get aggressive at times. Yesterday while getting my car registration renewed, I had to restrain him in his stroller after he slapped me in the face, and was hitting Michael during one of his tantrums. It all stemmed from not being allowed to flick the switch that was on the wall.

Nick also has a degree of Sensory Integration Disorder (SID)
Most kids on the autism spectrum have some degree of SID, but not all kids who have SID are autistic. Nick has been very sensitive to textures since he was an infant. This affects mainly what he eats. Nick used to eat things such as pasta, breads, and cereals as a young toddler. By the time he was diagnosed at 2yrs old, he had stopped eating all those things. He cannot tolerate the textures of most tablefoods and is limited to eating babyfoods, or dry crackers. If something changes in his environment, or his routine-it can be very difficult to get him to eat even that. It is not that he does not WANT to eat-just that his senses will not allow it. We have an appt. Tuesday to get him into therapy for this particular problem.
Another example of Nicks' battle with SID comes in the form of being sensitive to loud sounds. Nick hates the vacuum cleaner. He screams bloody murder the whole time I am using it. He also cannot stand drills,or public restrooms. We are learning everyday about new noises that set him off. He completely lost control when we inflated a plastic pool with an air source.

As you can imagine; Autism effects every part of his existence. Yes, he looks "normal" on the outside and that can be one of the toughest things about this disorder. There is no distinct appearance like having Down's Syndrome or a physical handicap like cerebral palsy. When we are out in public, Nick looks just like any other child. People see him when he is having a meltdown and automatically judge us as parents. We cannot "control" our son, he is too old to eat those things, why is he behaving like that? We have gotten all those comments. If they can't SEE something wrong with your child, it MUST be YOU. "You baby him too much", "Just take away the food and he will eat when he gets hungry"...all have been said by people who have no idea of life in our shoes. I am hoping this post helps to educate those who have no idea of what autism is-and it's effect on the families who deal with this everyday in their children.

University of Washington

I got a call today from UW explaining the types of programs we can pursue with Nick. The first program was one in which we hire a private therapist to work with him at home, and at UW.
The second type of program is a parent training program. Each week, the parents and child make the trip to UW to develop goals and teaching strategies for a home based therapy program.

We have decided to go with the first option. Nick needs more expertise in this area than we can give him. Plus, this therapist would work with him 1 on 1. We can then incorporate what the therapist does into our daily routines. The UW staff is starting the paper-trail to get him in, and we should be hearing more about that soon.

For the last two days, I have been trying to make an appointment with the feeding clinic at Madigan. They are all booked up-so they keep telling me to try again in a few days to see if they have any openings. I will be calling his Dr on Monday to get referals for the home therapies. I am hoping to have this started within the next few weeks. Keep your fingers crossed!!

Yesterday I took Nick to the regular pediatrician(how LONG has it been since we saw a REGULAR Dr??) because he still was not eating. This was going on the third day and I just wanted to make sure nothing serious was wrong. We had him tested for strep throat, and they looked in his ears to make sure everything was ok. Everything came back normal, and Nick was proving me to be quite the liar. He was just a little chatterbox the whole time, and charming the pants off everyone who saw him. He has started eating again as of tonight, and we hope this latest set-back will be a thing of the past shortly.

To those who pray, please say a short prayer for Isaiah (http://boards.babycenter.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=bcus1143871&tid=6552) He is going on his 11th day of not eating and nobody knows why. I can't imagine the stress this is putting on his family. These kids get into their little *funks* and they cannot tell us what is wrong. It can just be so worrisome at times.

An old battle revisited.....

This is NOT a battle I enjoyed either. The FOOD battle. I remember many nights of sheer frustration as I watched Michael barely eat enough to live on. He was not growing, not gaining any weight, not eating. We thought surely we must be doing it all wrong! We were under immense pressure to get our child to simply eat. I was so happy when Nick had a hearty appetite and was chugging down 30+ oz of formula along with 3 jars of food at a time. Where has that gone?? Those were such happy days before his issues with food were not even on the horizon yet. Everyone commented on his hearty appetite...trouble though,was just around the corner.

We are battling with food again. Nick has seemingly gone on an all food strike. He eats nothing but Goldfish. He went from a big eater as a baby, to a skin-and-bones live on air toddler. Top that off with his issues already with food textures, and you get a whole lot of frustration. Is it too much to ask for a "normal" kid?? One that does not put holes or dents in our walls from head-banging?? It is so hard to not know what your child wants. He can't tell us what he wants and that just kills me. I love him immensly, but just for once I would like our lives to be "normal".

Under the weather....

Nick has been a bit under the weather this week-and it is slowly passing around to the rest of us. Just the typical cold like symptoms. Nick is simply miserable which makes it hard on everyone. He was doing so good last week with his eating, and then this happens. He barely wants to eat anything-unless it is dessert. He is more irritable, and more prone to head banging. Good news is that he has used more words spontaneously.It is like a catch 22. He is sick and awful feeling, but making progress??? I don't think we will ever figure this whole thing out. Frustration is around every corner it seems. I am not afforded the luxury of being sick....as soon as I could yesterday I broke open one some Zicam, and that has seemed to help me with my cold, but it does nothing for my patience in dealing with a sick 3 yr old.

To make things worse, I had to put the car in the shop yesterday after lunch. On the way back to the shop, I suddenly heard a thumping like noise coming from the back. At first I thought it was a flat tire, so when I parked the car, I walked around to see. No flat. Great. That means it is something else now. I took it to Firestone to have them fix the "thumping" noise and to give it an oil change. Well, they just called a little while ago and said they would need to run a diagnostics on it to see why the "check engine" light was coming on. Does everything in my house get a "Diagnosis"??? It seems that is the common term when talking about our family. The "thumping"noise turned out to be a screw that got stuck in my tire(has been a common problem with us too-before Christmas we had about three incidents with nails in our tires), and some sort of gasket needed replacing. I also went ahead with a 30K mile tune-up while it is there. All in all, we are looking at $900. When it rains...it pours!

For the Love of....Chaos; and a little good news!!

I got some really wonderful news today at work!! I have been trying to contact the person(s) at the University of Washington in regards to Nick's placement on the waiting list for ABA therapy. We have been on the list since January-and the news I recieved today was that he is number THREE on the list!!!! I was told that I should be contacted shortly to start the evaluation process. Yes, they will be doing more evals on my little guy. He usually does pretty well during these-"pretty well" meaning you can just see Autism all over him. I am very excited to start this. The thought of him going 3 mos with no therapy was daunting. I mean, we do a little here at home, but nothing like a structured program. He is doing very well in his preschool-and I am thrilled to see him "coming out" a little more.

Things got chaotic around here while I was talking to my step-dad; and I had to say goodbye rather abruptly. Let me explain what happened. Michael and Nick were playing around with each other(a very welcome sight) and Nick ended up catching Michael's knee in the face. Nick had a slight amount of blood-and he now has a bruised lip. Michael; was so distrought over hurting his brother; that he went to his room crying. I explained to him that I was not mad, I knew it was an accident-and that it was "par for the course" of being playful siblings. I then told him of some of the things myself and his aunt Christy used to do to each other-and he laughed.


Nick was rather playful today-saying words, and interacting with everyone. It was brilliant!! I want more and more of these days!! We were overjoyed just watching the two boys get along all evening! Now, they are in bed and are likely carrying on the antics in their room-but this mom is not caring. They have few moments like these; so I let it go when it does happen.

Feeding Therapy

We saw the nutritionist again this week. She had wanted to do a follow up on Nick since our last appointment. It did not help that he had just gone through another eating funk where he barely ate anything-jarred food included. He had managed to lose a little weight, so she is going to call Nick's doctor and recommend we get him into a feeding program. I never knew feeding therapists existed-but, then again, I am learning on-the-job here.

His latest "siege" seems to be over, and we got our jolly little Nicholas back. He is quite cheery, and ready with a smile, and that is good. We have worked with him on clapping and he now does it most of the time with little prompting. Right now, he is just a joy. He is definitely a "Mommy's Boy". When I get home he wants to be near me and will have an absolute fit if I have to leave again. He will come and throw his arms around my legs and look up at me with the biggest grin. You cannot resist smothering him with kisses when he is just being lovely.

Right now, all is well and he is happily "talking" with his big brother. He is mimicking today like crazy and has even said a couple of words on his own!! He said "Boo!" to Michael and "hello" just now. This morning they are playing together in their own "not-so-typical" way, but I am happy to see them interact in a playful manner. Usually we get screaming from one or the other..or both.

Busy Weekend!!

We have had a very busy weekend here. It started Friday morning around 8:30am-when I got a call that I was needed down at Hangar 7 to retrieve some bleachers needed for the Special Olympics. I met up with one of the Officers and one NCO down at Hangar 1 who were already working the issue. We drove a truck down to Hangar 7 and started towing the bleachers to where we needed them. I was pretty much out of my shop for the rest of the day-helping where I was needed. Friday evening was the Opening Ceremonies and everyone who is anyone on base was there. We had News coverage (which myself and another NCO kept a watchful eye on--Our Captain had said they had wanted to interview someone from the base-and suggested our names!). As the athletes started marching in, it was hard not to get a tear in your eye. They were all so happy to be there-they were just beaming with excitement. There were 2,300 athletes plus their families and coaches!! I stayed until the Ceremonies were over and did not get home until around 10pm. I had to be up Saturday morning to get ready for a Birthday party Michael had been invited to at 11:45am. We still needed to get a present-so we were out the door by 10:30am. It took us a few minutes in the toy aisle to decide what we wanted to buy. We decided on a Shrek 3 game. It was a new movie toy and chances were about 100% that he did not already have this game-plus since it was Shrek; it had a general "disgusting" appeal; which got a stamp of approval from my own 8yr old little Ogre. Time to head off to the party.

The party was held at a Sprinker Recreation Center in Spanaway. Not too far from where we first lived when we moved here. It was held at the indoor ice-rink so we all went ice-skating. It was nice and cool inside;which was a break from the heat outside. Ice-skating is very similiar to roller blading and Michael was zipping around on the ice in no time. I too got the hang of skating on ice very quickly. Before I knew it; Michael was out in the center of the rink watching some of the figure skaters doing their jumps and spins. We might just be making more trips out that way during the summer.

After the party; we came home for a bit, and then Michael and I went back out to the Special Olympics to help out with the Victory Dance that evening. We were there from about 5pm-10pm. The Victory Dance was fun for Michael too. He played some games and won a few prizes, and he enjoyed listening to the band play. He said he had a good time even just following me around while I was helping a few "lost" athletes find their parties. We got home and Michael just crashed. Today, I am looking forward to not doing as much and just hanging out at home.

Update

Just thought you all would want to know. Nick came to me after I got home with the biggest grin his little face could hold, and gave me a hug. His hugs are rare, but I know they are genuine. He wraps his sweet arms around my neck and lays his head on my shoulder. Simply devine. All the tantrums of the previous days have melted-and it is almost like he is saying "I am sorry mommy". He is asleep right now in his bed. Maybe it is a growth spurt, maybe his brain is busy making some connections-time will only tell.

Another day....another hole in the wall

This morning started out just like the last few mornings...with Nick in one of his moods where the slightest thing sends him into a tizzy. There is another hole in our wall-right under a light switch in the bedroom where Nick banged his head. UGH! I need a room with padded walls. The picture above is reminiscent of happier times. Today I took Nick to Target and we bought some outdoor summer stuff. A little chair for him to sit in outside, and some water toys. He weathered that trip fairly well, and when we came home I let the boys play outside. That pretty much wore him out,and before I knew it, he was in his bed asleep. I was ever so grateful to have a couple of hours of peace from screaming and banging. I was about to let him sleep however long he wanted to if it meant a break from outbursts. He woke up in a fairly pleasant mood though...until it was time to eat. He will eat something one minute, and by the time the next bite comes along he won't even look at it. Makes a small job very frustrating. Today he did manage to say "All done" without prompting so I guess the day was not a complete waste.

I got a new book while I was at Target. It is called "Born on a Blue Day". It is the story of Daniel Tammet. He is diagnosed as an Autistic Savant and thinks in numbers and colors. He can do huge mathematical sums in his head. He can also calculate what day a certain date fell on years ago. It is quite an interesting read. Positive books like this one give me hope on days like today.

Meltdown Mode

I think that would best desribe how Nick has been these last few days. We are constantly trying to prevent him from destroying the house. His frustration can reach an all time high in a matter of seconds, and before you know it he has put five new dents in the walls. I don't want to keep saying that this is so hard-when I know most kids have tantrums-but it is VERY hard when Nick's tantrums are caused by loud noises, or even noises we would not consider loud. Yesterday he went ballistic when we used a small air pump to blow up a plastic pool. Sometimes we tend to "forget" that Nick can be sensitive to such things-and noises you would not think send him spiraling out of control. His answer to every little thing right now is to bang his head or hit himself. It is like we trade one thing for another-Nick's speech has picked up somewhat; but he is easily frustrated. During times where he is not as verbal, he does not hurt himself as much. It is a cycle. I am hoping this "siege" is quickly over.

Instructions Included

So, all we have to do is periodically clean his "filters"?

I Survived!!!!

I SURVIVED!!! Yesterday I agreed to watch my friends' two boys ages 7 & 4. The 7yr old (really, he will be 8 at the end of the month) is in Michael's class at school-so they have been super excited about this day all week! So, I had two 8yr olds, a 4yr old, and a 3yr old all running through the house. I thought it would be really fun for them if we went to see Shrek 3 while they were here. I loaded up the three oldest boys, and left Nick at home with Mike. It was an experience. Riding in a car with a backseat full of boys lends itself to some strange conversation. 8 yr old conversation. I heard things like "If I am half human I can do this..""Let's pretend we are playing Star Wars and you do such and such to me..". Once we got to the theater, I informed everyone of the rules and that we were to all stay together(this was more for the 4yr old) and we actually had a great time. The boys absolutely love Shrek-if you've never seen it, the first two movies are great! He does all the things little boys find hilarious. We got back from the movie and I made hot-dogs for everyone and they played video games until their mom came. Michael came crawling into the bedroom with me around 10pm and fell asleep; Nick crashed around 9:30pm, and the other two boys were picked up at 11pm. Go to Michael's Page for an update on him!

Ups and Downs

Just when I start to feel ok about things with Nick, something brings me back to our reality. I remember when Michael was three I took him to see Spiderman-he was so excited! He went to see it a number of times, and became obsessed with him as well as some other comic book heroes. I cried again today because Nick just cannot enjoy something like that. Somedays I feel sad because he cannot relate to what other three year olds are doing or saying. Yesterday we went to the park while we waited for Michael to get out of school. There were three other kids there around the same age as Nick-one was a year younger. They were worlds ahead of him-even the little one. He was looking at his mommy,pointing things out to her,even conversing with her. Then I looked at Nick. He was under the little wooden platform,playing silently with the rocks. We work so hard with Nick-just to do the smallest things. Nick works hard too. How must it be for him to have all these demands placed on him that he does not understand. Our world makes little sense to him. I liken it to when I was stationed in Japan. I could not speak the language, the culture was foreign, and that made for a hard time communicating. I was only there for two years, Nick will be there for a lifetime.

Mike was excited today. He told me that he and Nick had a "conversation" while sitting on the couch. It went something like this:

Nick: Night Night time
Mike: No, it is not night night time Nick.
Nick: Night Night time...circle.

That was his first attempt at having a "conversation" with anyone! Bless him, he is TRYING so hard!! Mike relished this little peek into the workings of Nick's mind-and we are hoping for more peeks every day.

Our sessions with him are still a little shaky at best. Today my main focus was on the PECS and getting him to understand that he can get things he wants with them. I have increased it to two pictures now and we are learning to choose between the two. I am also working on getting him to imitate actions such as clapping. I feel somtimes we are trying for the impossible-we demand things of him and his natural response is to retreat. If he does not understand he stims like crazy. It is a constant battle of trying to re-direct him and keep him focused. While trying to do the PECS at snack times he shouts in jibberish and flaps his hands almost constantly. Today,he got so stimulated with me clapping that he preferred to do his happy dance and run around the room. I had to physically make him clap his hands-and half the time I am not even sure he was paying attention. Oh well, tomorrow is another day right??

They are fixing our house!!!

Nick has sure done a number on our house in the last year. His obsession with lights has burned out MANY bulbs. Seems as if we are replacing them every 2 weeks. Our kitchen light finally gave up the good fight last week and went kaput. I had today off,so I took the old bulbs to the base Self-help store and traded them for new ones. Mike called housing maintenance yesterday to fix our storm door(which also went out for good this week) as well as patch up the two dents Nick put in the wall with his head. They came out today and spackled the dents, and ordered us a new storm door!! Our house is finally getting back in shape!! As I said earlier, I had the day off today so I decided to take both the boys to school. I wanted to talk with Nick's teachers to see how he is doing. I met his main teacher,Liz in the hallway and another teacher was walking with her. The other teacher said "Hi Nick!" and he turned around and looked at her!! Neither of us could believe it. She had a huge smile on her face after that. I asked how he was doing with speech and Liz told me that he is echoing wonderfully. He is starting to say "Set...GO!" after she says "Ready.." Liz then informed me that Nick ATE the other day in class! I asked if it was a cracker; and she said "YES!". I thought it was his regular round Ritz cracker until she told me "it was one of those dinosaur shaped ones" I nearly fell to the floor! Nick had refused ANY cracker that was not a circle or a goldfish-and now he is eating DINOSAUR shaped ones???!!! She said he knows every song they sing,and is really good with "Nesting" and stacking items(No wonder he stacks our blocks rather than matching them during our sessions-yesterday he built a tower of about 6 blocks). I am glad to hear that he finally broke down and ate SOMETHING at school-as well as his good report.

So, the repair guys came and spackled the walls-well, what does Nick do when he gets home from school? He discovers the still damp spackle and puts his fingers all in it! Mike managed to smooth it out a bit, then he sent me to the store to buy a baby gate and some more door locks. I took Nicholas with me to Wal-mart and let him walk instead of riding in the cart. He is doing so well with this, that it is no hassle taking him anywhere. The floor at Wal-mart must be interestig, because I had to pick him up off it several times. He would get on all fours and crawl down the aisles-he was looking at the wheels of the cart as I pushed it. He layed on the floor as well-I think he liked the coolness of it. He went haywire when he saw a mirror-smiling and twisting his hands in front of himself. I think I even caught him saying "hi" to his reflection in passing. I did not care what people thought, Nick was happy and having a great time. He did his little funky run(with hands flapping in excitement) as we walked out of the store and to the car. We had a marvelous time. Nick really likes the lighting in Wal-mart!

He has also started something completely new. He now sings the notes he plays on his keyboard. We wonder if he has something they call "perfect pitch" because he can copy sounds very accurately with his voice. Only time will tell I suppose.

Ramblings

Well, the PECS are going so-so. I think it is mostly my fault though. I just get impatient with how slow things are going. This is not one of those things that happen overnight-my brain knows that...but my heart does not. I think the reality is starting to sink in a little more. His quirkiness is becoming more apparent-and it is sinking in that this will be a long haul. Our sessions with him are very brief-he cannot sit still for more than a minute, and after each task I have to let him run in circles, or into the livingroom for a bit. Today we got two items accomplished before he shut down. He wants to stay in his world, and we are trying to bring him out...it makes for a unruly setting. I just have to remember to take it slow...Rome was not built in a day.

A little music

I put some more music on the site so you can listen to some tunes while you read. I did not choose ALL the songs, I just let the site pick them for me (hey, it would take me WAYYYY too long to select 45 songs!). Most of them I like though.

I finally got Nicks' PECS in the mail today. We started him off with the one for "cracker" since he seems to be eating them again. Today we got a real shocker! He led Mike by the hand and said "Come"! We could not believe our ears! Well, I think I am going to shower and then be off to bed. Good Night!

another week...

We made it through another week! We had a small family party on Tuesday to celebrate Michael's birthday. Nothing spectacular, just a small cake and some presents. Nick thoroughly enjoyed smearing the cake and smushing it through his fingers. The only time he has actually EATEN cake was on his first birthday. We are happy to report that his interest in Ritz crackers and pop tarts has not dwindled--so that is at least some solid food that is getting into him. This weekend was a busy one. Yesterday I schlepped the boys all over town to get the cake, and other supplies like chips,sodas, and Michael spent his gift card from my dad. Nick handled it all with ease-not too many "Nick moments". I actually think he rather enjoyed the little party in his own way. He stayed in the room with all three boys, even if he was just on the sidelines; it was apparent he wanted to be near them. When it was time for cake, I sat Nick in his chair so that he could at least still be part of the action. The whole time the boys were eating Nick just sat and watched them. He was trying to figure this whole social scene out and he watched intently everything they did.

Today, we went out to the grocery store and Nick started something new. He shouted "Aya!!" along with a few other vocalizations rather loudly. He has never shouted before in public, so most of his vocal oddities went unnoticed. Not today. He was sharing with everyone his own "silly talk". He does follow us rather well and does not tend to run off; you would almost say he is extremely well behaved. You might think he was completely normal. Until he runs by you waving his hands in the air, or walks on his tip toes when the patterns on the sidewalk change. Autism colors every part of his development. In some ways it is devastating-in others it is a complete gift. Nick cannot stand the sound of the vacuum cleaner, but he will put his ear right next to the speaker on his keyboard and play the notes. He plays his keyboard every single day. He is a whiz at shapes. It is like he understands the geometric patterns and he is completely at ease. Music is another thing that is very predictable-each key plays a specific note. That does not change. The shapes have a beginning and an end-it is always the same. People change constantly-and this is what is upsetting. While he is a whiz at putting together geometric puzzles, daily tasks have to be taught. We are slowly working on getting him to dress himself. Through repetition, and lots of hand over hand help, he is learning to pull up his pants. Today, he was able to follow a command-"get me your pants". He turned, saw his pants on the bed, picked them up and gave them to me. I was ecstatic. We are hopeful. He IS learning, and he is showing us that he catches on to things very quickly.

Social skills and play-doh

That is what we worked on today. When I got home from work, I sat down with Nick and Michael and we had snack time. All three of us sat at the table, and I had two types of crackers in the middle. We did a lot of hand-over-hand with Nicholas getting him to point to what cracker he wanted and prompted him to speak. After our snack time, I walked him to the kitchen and helped him to put his plate in the sink. We sang our "clean up" song while we did this. While he was eating snack we brushed up on our social skills and not stimming with the plate. With the play-doh he gets sensory input and we mushed it, and smushed it with our hands. We worked a little on imitation skills with him copying me as I mashed it with my hands and fingers. It is hard sometimes to keep him from stimming in these situations(twirling the roller,spinning the plastic cutters,gesturing with his hand in front of his face). That still pretty much dominates our sessions right now, we just re-direct him. He had a mini-meltdown when it came time to clean up. Lots of hand-over-hand direction,picking him up off the floor,intercepting attempted head banging, but with lots of patience, he came around and put things away. It is not like a normal kid when you tell them where stuff goes and they put it up, with Nick I have to physically take his hand and him over to where the item belongs and say "Put it IN". We have had good days so far. I have also learned that Nick finds it difficult to sit still through an entire meal(he is constantly moving,twisting,vocalizing) and I have had to break up his meal time. He eventually eats most of it, I just have to let him burn off some energy in the middle of it...otherwise it gets too frustrating for both of us.

Pictures

His room is complete!!

I think it looks simply wonderful!! Nick seemed to like it as well this morning. We played with play doh for about 30 min and he had enough-was not focusing at all, so I decided to end it with him helping to clean up. I had to assist him most of the way, but we did it. I ordered some PECS, a PECS notebook, some small colored blocks, and an in-home ABA program. I can't wait to get it all, and get started. Here is his new "classroom".

Out of frustration.....

At loooonnnggg waiting lists, and the very limited services offered (a grand total of 3 places relatively close to us-1 was closed down, 1 had a one yr wait list, and the third I have not called yet) we have decided to convert the small bedroom into a classroom for Nick. Friday night, Mike put the bunkbeds back together and we moved both boys into the bigger room. Nick of course was adament about NOT sleeping in that room, so we let him sleep in his old room for another night. Everything has to be in stages for Nicholas. TOday, we moved his firetruck bed into the old playroom, eventually he will progress to sleeping on he bottom bunk. It is a little cramped with the three beds, but they still have space to play. After all that was done, we took a family trip to Target and dished out $400 on shelves, bins, coat rack, and a few more toys. I have found websites to order the PECS and the PECS notebooks(I tried to make some myself, but it just did not work) as well as some ABA books and other items. I might go to Barnes and Noble to see if they have any guides on how to go about this, or just order books online. We paid off our remaining credit bills (just about $1000 total) with the income tax and we still have about $1000 left from that. Michael is helping Daddy build all the shelves. He really likes the drill!! Gives them some "male bonding" time building things.

school pictures

Here is what Nick's school pictures look like this year. It costs $40 for all 6 sheets, so we might just spring for that deal. The week is going good for Nicholas so far.

Nicholas movie

No wonder autism gets such a bad rep?!!!!

This article is just simply infuriating!!
http://blog.washingtonpost.com/virginia-tech-shootings/2007/04/dormmate_cho_was_distant_seeme.html

Now it is all over the press that they *think* Cho was autistic and that is what led him to kill 32 people plus himself. People now think anyone who seems "distant","uncaring", etc. is autistic. I am sorry, but while I know auties are known to have tantrums, and their frustration can lead to some violent behavior, this in no way means that everyone who is violent is autistic. I am sorry, but there are more severe conditions that result in violence other than autism. Most of all, autism is NOT a mental illness!!! It is a NEUROLOGICAL disorder. What is even more frightening is that now, when we mention Nick has autism, people will only think of this psycho who was very disturbed mentally, and not see what a wonderful little boy Nick is. They will automatically think that Nick is just seething with anger, and that he should be kept away from the public because he is a danger to others. America needs to wisen up.

One amazing little boy!

We often wonder just how much is "getting through" to Nicholas since he rarely lets us know what is on his mind. This week we had some real surprises!

Mike was sitting on the couch watching tv when Nick came up to him and goes "Doing?" Mike was shocked and actually answered with "I am sitting on the couch. WHat are you doing?" Nick then went into the kitchen where he started playing with his Leap Frog Fridge Magnets where we got even more shocks! Nick was saying "Yeyow"(Yellow), and "Geen"(Green). Those were the colors of the letters he was playing with!!! He proceeded to put the little letter magnets in the toy and said some of them like "N", and "W" upon recognition. He also noticed that the "M" could be a "W" when turned upside down. I know this because he studied it, said "Doudle EEww" (Double u)and then turned the M the right way.

I believe his receptive language is also getting better as he seems to be understanding us when we explain things to him. It is just amazing to be a witness to these little daily miracles. He has been very cuddly lately, and has seemed to develop a slight sense of humor-he cracks up when he farts and we make a silly face.

Today when I met him at the bus after school, he looked at me, smiled, and said "Hi!" A few minutes later I asked for a hug, and he put his little head on my shoulder and wrapped his little arm around my neck. We hugged for about a minute or so, and then went back to playing. I cannot express how much these little miracles give me such joy. I am just tearing up with happiness right now!!

JINX!!!

Apparently I jinxed myself when I posted yesterday about Nick eating Ritz crackers! I gave him some today after he ate his lunch, and all he did was line them up on the table. They went nowhere near his mouth. Oh Well. We will keep at it.

Our big outing today was to get Michael's hair cut, and if possible, Nick's as well. I thought it was a hopeless cause the second we entered the salon. There were tons of people waiting in line, and more waiting in chairs. We had barely set foot in the building before Nick was stepping all over the other people to get to a light switch. He managed to step on one little girls foot, and I apologized profusely at her. Nick it seemed was on a rampage. I tried to get him diverted to another portion of the small room. Over on the other side he went right for an electrical outlet and ended up knocking over some of the haircare products(he is not graceful in movement by any means!). I ended up having to hold is hand very firmly with him slightly protesting. I was seriously thinking maybe this was not such a good idea, and was about ready to confine him to a stroller-only I did not think it would have helped matters much. The good Lord must have had some pity,because we were able to go right in. I was cautiously optimistic when I plopped Nick down in the chair to get his hair cut. Needless to say, he sat VERY still, and I was very impressed with his hairdresser. Nick did not make one single peep-I don't think he even moved the whole time. I was silently jumping for joy. This was a first. I made sure they did not have those vacuum attachments that torment him so much-he was a perfect little angel. Then it was time for Michael to get his hair done. Nick spent the time amused by the reflection of his hand in the metal parts of the chair, and voila, we were done! Score!!

Full of surprises!

I took a few days off from the computer. I just needed a bit of a break. I was spending almost every spare moment of my time researching/talking/chatting about autism and therapies. It can really start to run your life after a while. This week was full of surprises though.

Tuesday I met with our new case manager to discuss Nicholas. She asked a few generic questions(ones that we have been asked by everyone who evals him-you can imagine how many times that has been). As far as therapies goes, I was basically told to just look in the phone book and find some that would take our insurance. UGH! So I looked. I could not find anything for behavioral therapy. I have scoured over the internet to find people...I managed to find one Occupational therapist in our area and I plan on calling her on Monday. They have programs for autism-they are just located in places like Seattle,Bremerton, and Spokane has tons of them. Since gas has gone over $3 a gallon, we are not looking to be driving that far. This is where "autism" can take over your life. Finding any therapy that boasts some success.

One of Nick's obsessions that we could live without is opening/closing windows. He will find any way he can to get to one. He is also obsessed with the screen that is on the other side of the window. He was in the playroom on Wed evening playing with the window and screen, and he managed to rip the bottom of the screen out. I pulled into the driveway to find Nick halfway out the window. I yelled "Nick NO!" and he pulled himself up and into the house. He works his way past the locks, and the rubber stopper is no match when he really gets to going.

He ate a Ritz cracker today!!!! I know this is small potatoes to most, but Nick has been on a ban from eating anything solid since the beginning of the year. Not even his beloved goldfish crackers have touched his lips for a couple of months. Today, he ate a handful of Ritz crackers-oh the joy!!

Tonight was a special night for daddy as well. Nick crawled up onto the couch and sat next to daddy. Not only did he sit with him, but he kind of curled himself into daddy's side and watched some TV. Mike was so happy-Nick had also not done this for months, and Mike was more than happy to resume this activity again. He loves it when Nick gets "comfy" on the couch and just for a few minutes seems to be at total peace with himself. He is not twirling,spinning, or doing anything out of the ordinary...he is just a boy relaxing on the couch. Tonight at bathtime, he even managed to put two words together on his very own. They were "Michael No!". He even used them correctly when Michael was trying to put a toy fish where Nick already had one. Nick wanted that fish to be the "only" fish in that spot, so he said "Michael No!" Like I said, this week was full of surprises! I just hope they keep on coming!

Easter

Viewing the loot from a safe distance.


Slowly inching towards the spread!


Seeing the world from a different view.

Cheeky boy!

Playing with my brother

Autism University

Time for a little fun!! Dealing with autism definitely requires a sense of humor, and I usually find all of Nick's little obsessions and quirks very endearing. After all, his little oddities make him who he is essentially. Some of his quirks I could live without, but some of them I would miss terribly. Here is what his yearbook is like in "Autism University"

President of the twig and straw twirling club yrs 2 & 3

Captain of the Synchronized Spinning club yrs 1,2,&3

Team Captain of the "Happy Feet" dancing team yrs 2&3

elected as the Headbangers Ball King yr 3

President of "Just say NO to tablefood!" yrs 1-3

Team Captain of the OCD Light-switch club(can flick a mean switch in seconds!!)

Honorary Cafeteria chef-can make anything look,taste,and smell like Pink Dora Yogurt!

Record holder of most times repeating a single word: yr 3

Nick's new "hobby"

Happy Easter!!

Hiding!

Nick did fairly well today at the game! He even managed to clap and cheer for Michael after everyone else did! One mom claimed that was the first time she had heard Nick say Michael's name! I told Michael that his brother was cheering for him and he said "I know! I heard him!". AHHHH,a few seconds of normalcy. The rest of the time he was spinning himself,and hiding behind the barriers. Other times he would wave his hand in front of his face,laugh,and blurt out some verbal expression that no one understood. He was a very cuddly bugger today as well. He went up to nearly everyone and "hugged" their legs. He spent a few minutes examining the zipper on one parents jacket,amazed by its long tail hanging from the zipper head. I forget how many times we were asked if we saw Oprah on Thursday. Yes we did. I just wish she had other parents on there rather than the same people who had been on Larry King a couple weeks before. Seeing older kids who still stim like Nick does, just brings it home that Nick might not ever "fit in". It is hard when we go out-he does not vocalize like a normal three year old would. He has his little vocal stims-sometimes he repeats a word over and over again, like "Aya". Sometimes he shouts in jibberish. He ALWAYS takes his shoes off, and he has a new thing now where he places one hand on top of the other and screeches with delight. Mike is getting better at difusing his meltdowns. When Nick starts getting crazy, he offers up a sticker or two. This might be the reason I have found address stickers all over the house lately. Last night though, we were not fast enough, and before we knew it, Nick ran head first into a wall. Nothing like seeing your 3yr old bounce his own head off a wall. It is not something I care to see everyday. Normally, he would gently bang it, now it is all or nothing it seems. And yes, he has bruises now to prove it. I have our new case manager coming out on Tuesday to do another evaluation on him. Hopefully she can offer up some more programs for him. I have a few in mind of my own, such as the Auditory Integration Therapy that I have read about. But,we will see if she has anything she can get us into. I called UW last week, and got an e-mail back from them saying it could be months before Nick gets in. I can't wait months. Anyway, since Nick does not eat any candy(or any other table food for that matter) here is his Easter loot this year:

I am going to give the Fridge phonics a try. And I also bought him some flash cards with animals and textures on them.
Have a great Easter everyone!

Why is this such a hassle???

Why does getting help for my son have to be such a hassle??! I called our new case manager just now to ask if there is any program we can get Nicholas into while we are on a never-ending waiting list for UW. She asked me what level his self-help skills are at. I will tell you where they are at....NOWHERE!! His language is at best at a 12 month level. I just cannot fathom waiting anymore. I have been patient,and accomodating-it is not getting us anywhere fast. I must hound and hound if I want anything for him. She told me "Well,there is not many things out there for him" WHAT???!!! That cannot be!! If I must, I will call these people in charge of programs directly. He is covered through the state disabilities program, he is covered through the military-he is on at least 3 different programs for disabilities.
I got her to agree to a meeting at home with us next week. That is a start at least.

A little upset and disappointed

I was watching the Larry King show last week and they had a show on autism. I thought it might be good to watch,so me and Mike watched it together. I came away feeling upset and kind of angry. They had celebrities on there whose kids were diagnosed with autism, and they were talking about how much therapy they were doing. I heard someone say something like their kid was getting 80 hours per week. THEY are getting 80 hours per week and here WE are, barely getting 10 hours through pre-school. I am getting frustrated with being on waiting lists. As we wait, time is ticking by. Precious time. The next day, I made some phone calls. I called Nick's Dr,our case manager,and UW. I also wrote an e-mail to our local Autism Society chapter. That was last Monday. The ONLY person I heard back from (two days later) was Nick's Dr. I asked him if he had recieved the referral from Nick's last appt with the nutritionist. No. You can bet I will be calling everyone again and again until I get an answer. It is frustrating. It is sad. I came away from the show thinking "What makes their kid MORE special than mine??" We are the lucky ones. Our therapies are covered through the military. MOST insurance companies do NOT cover ABA therapy, or things like RDI therapy, some wont even cover Speech or they treat kids with autism as being "speech delayed" only. Most parents go into dept just trying to help their kid. It is outrageous! A "regular" person cannot afford 80 hours of therapy-yet don't our kids deserve it as well?? 1 in 166 kids is diagnosed with ASD. Insurance companies need to get on the ball and cover programs for our kids! April is Autism Awareness month-so please get informed about this! We have had to learn everything for ourselves, and we are still trying to navigate through all this.

One more thing I need to do is get Nick tested for Fragile X. 2-6% of kids with autism also have Fragile X. I have gone back and forth with getting him tested-will it make a difference in his therapies? Probably not. But I need to know. Just to put my mind at peace. I am almost 100% sure he does not have it, but you just never know. I want to get the test so that I can say for sure. Wish us Luck!

If you go to http://www.autism-help.org and click on "Personal Stories" you will see parts of our blog!

Spring has sprung!!!

Enjoying better days!


Today was a day for chores. We started the morning with a few tears over yogurt. Nick saw the yogurt in the fridge and decided he wanted some. But, he could not get the words out. He got frustrated, but I continued to work with him to get him to say "yogurt". He started talking in jibberish,but I just told him "I don't understand jibberish...use your words". A few frustrating moments later he finally said "yogurt". I praised him and he of course got a container of his favorite pink Dora yogurt.

After that, I got him dressed and we practiced brushing his teeth with his new toothbrush. Michael also got a new toothbrush yesterday. Nick seemed to do a little better if I let him hold the toothbrush and he helps brush his teeth. He still hates it, but did not object too much(afterall, it is a "rule" that we brush). This afternoon, Mike and Michael did the yardwork. Boy is it easier now that Michael can help out with things!! Michael swept up the clippings and helped daddy with the pressure-wash. I am looking forward to summer time. Taking the kids to Wild Waves and to the zoo when the days are nice and warm! We had such a good time last summer. Michael is going to soccer camp again in August. This time he gets the option of going a full day-we will see. We might even make it over to Spokane this summer and see what we can do there!

More pictures on the picture blog!

Ready for his closeup!!

Nice to see him SMILE!

This is what I usually get from him...

We have had lots of good days with Nick this week! He has been his usual UN-usual self; and we are happy to see that. Not very many tantrums this week. In fact, we have had some what of a language explosion recently. Nick has learned through echoing-the use of the word "Goodnight". He will say this everynight after I say "Goodnight Nick"..he says "Goodnight". He has also answered a few questions recently. Nothing too extravagant; one word answers that have to be thought of heavily by him, but it is progress. I think pre-school has done wonders for him. I don't know what we will do when he is out for the summer. I am hoping his ABA and Speech through UW will have started by then. It is frustrating to play this waiting game. Don't have much to write tonight; I will write more tomorrow. Now, I think I will just go check on my babes and turn in for the night!

Requesting what he wants...A work in progress

This is what we have been working on with Nick during dinnertime:

We started out with just one word "more" and through the past few months we have now gone up to two-sometimes three words.

Under Seige

That is what best described yesterday with Nick. It was horrible. His tantrums are getting more frequent-and they last---for hours. He throws things, screams at the top of his lungs, and bangs his head on anything around. He banged it so hard yesterday that Mike was worried he would knock himself out. Mike was literally at breaking point. He has no idea of how to handle this. It breaks his heart to see his son hurt himself. It breaks my heart too. I have never felt as hopeless as I did yesterday. How do you parent a kid like this? We had a long talk yesterday about how to handle his meltdowns. Mike was mad that I put him in his room and shut the door-why? Because he just screamed even more and banged his head even harder. Mike did end up spanking him-a fact that neither of us are proud of. We talked yesterday about how we should deal with this-this is different than when Michael would throw a tantrum(remember those doozies??!)This has really put our marriage to the test, and I can see how couples would divorce over such issues. I know Mike loves Nick with all his heart, and it is just breaking over this. We had so many dreams for him, and now we dont even know if he will ever reach them. It seems like such a long shot from where we are at now.

We had our appt. with the nutritionist yesterday. Nick was his peachy little self-after having screamed the entire morning. He has managed to gain weight and height despite his many issues with food. He weighs 30lbs and is 38" tall. The nutritionist IS going to recommend he get therapy for eating!!! THANK YOU LORD!!! She said that we are doing a wonderful job with the babyfoods we are giving him,as well as the vitamins and pediasure. She said that technically he is "Too healthy" for their clinic,but she did see that we are just frustrated and in need of some outside help. It is just one more therapy for us to add to our list.

New video

Video I shot tonight of Nick.

He looks so....well, autistic

Some days Nick could almost pass as a "normal" toddler-so long as he does not speak-to the outside world. Then, there are days like this weekend. Friday I took him out to the Commissary and all he said throughout our whole journey was "Aya,aya,aya", complimented by him rubbing his hands across the cart the entire time. He even removed my hands from the cart so he could do this. After we checked out, I let him watch the bagger put the bags in the car. Only he was not interested in watching her in the slightest...he was pressing his face against the tail lights of the car. He did this with both lights-walking right in front of the bagger as if she was not even there. Well,according to Nick...she wasn't. He has also seemed to regress a little bit with regards to food. Did not think this was possible??? Well, he no longer eats even crackers. Instead,he takes a bite and screams. At the soccer field,he is "typical"...spinning himself, inspecting the turf, and crawling around on the ground. Just a few minutes ago he was licking the windowsill. If only we could see what is going on in his mind. Somedays he is amazing...playing little tunes on the keyboard, he is a perfect mimic. I could have sworn I heard him play a couple of lines from "Twinkle,Twinkle,Little Star" the other day. I cannot wait to see what the nutritionist says this week at our appt. I am hoping they recommend a therapy for him to help him eat...we are just at the end of our rope. He just does so many "odd" things, it is getting harder and harder to see his behavior as something any 3yr old would do.

The group Five for Fighting(their song is on this page) is raising money for autism,as well as many other charities. Just go to http://www.whatkindofworlddoyouwant.com and view their videos. That's all you have to do! Everytime a video is viewed, up to .49 goes to that charity. It is pretty awesome.

Michael is doing good. Yesterday he was the goalie during the whole game-he only let in two goals,and they tied the game at 2-2. Pictures are on myspace at www.myspace.com/autiekid (yes, I have a myspace! More or less for Michael)

Things I have learned since having children....

1. You CAN love the second child just as much as the first.

2. A small lizard can fit inside of a matchbox car--and live.

3. A small lizard inside a matchbox car cannot be taken out of car.

4. Lizards cannot swim

5. Toilets do not like to flush when you unroll a whole roll of toilet paper in them.

6. Toilets are a good place to store your sippy cup if you are two years old. You can also store the TV remotes and your older brothers toys here.

7. It is possible to get shoe polish off walls

8. Milk Bones ARE nutritious

9. If you take a mouthful of Gravy Train you will have brown "gravy" coming from your mouth

10. Gravy Train IS nutritous

11. Toddler will eat dog food with no problems, but will refuse to eat any food you make.

12. The REAL ER at 3am looks nothing like the TV ER

14. They really can glue your childs' forehead back together

15. They will not give you a tube of this skin glue,no matter how many times you beg

16. You probably DON'T want to know what that sound was!

Nick clapped!!!!!

This is an old photo of him clapping at around 15mos. It was the last photo I have of him doing this, and I know he has not clapped in at least a year. It was one of the skills that he lost before being diagnosed. Today, at Michaels' game he clapped and said "YEAH!" I was so shocked that I just stood there looking at him. He was watching the game,shouting "yeah" and "Michael!" After saying his "peace" he went back to his happy shoe-less self,but for that moment,he was cheering on his big brother with the other parents and siblings. He spent most of the game like this though:

No shoes,no socks and absolutely loving it! I did put them back on at one point(just so you all know) but within seconds they came off again and then I just thought what is the point?? He merely tolerates shoes/socks out of necessity. He has gotten better about keeping them on in public places,but we still have times where we see him plop down in an aisle and begin taking them off.

Pre-school is going well. (Hmmmm,wonder if they have the same shoe episodes that we have?) I cleaned off Michaels very first backpack(a Dr Seuss one that is red,blue,and yellow) that he used for daycare(it is a tiny one!) and wrote Nicholas Weger on the outside. His name is right next to Michaels' faded out one. Michael was glad to hand down his old backpack to his little brother and just smiled at Nick. Thursday was the first day that he took the bus. Mike said he cried while he was getting on in the morning-he told me he felt very bad about doing this and even shed a little tear himself as he put Nick on the bus. He got very worried when 11am came and there was no sign of the bus to drop Nick off at home. We made a frantic call to the school to find out what time we should expect Nick as it was now almost 11:30. I pictured him crying,and being terrified and not being able to say anything. I was on the phone with the transportation people and they were trying to find out where his bus was. I can only imagine what I sounded like to these people! They told me "She is on Birch St. now, you might want to go outside" We went outside,and sure enough,his bus was right down the street. She pulled up and opened her doors and there,in the front seat, was Nick. He was just sitting there enjoying himself,completely unaware of our plight! Friday went much better for all of us!

Michael is doing better in soccer. Since Mike also took on an older team of kids, he has been practicing with them as well. He has even scored on them and stole the ball from them a few times-and they are at least a foot taller than him! He told me he gets bored playing with his age group and likes to play with the big kids. Which should not come as a shock to me since he has been that way since he was like 3 years old. He has always liked hanging out with the bigger kids. The big kids run the full field(8 and younger run half the field)and Michael does a good job of keeping up with them. His skill has improved drastically from last year and I have to admit,he is one of the best on his team with regards to controlling the ball. His main problem is that he is not aggressive,and we are trying to work on that. In other news,he has another loose tooth!

Night Shift

I am adjusting to life as a vampire quicker than I thought I would. In fact, I think I really like this shift. I get off around 7 or 7:20 and have enough time to drive Nick to school. By the time I get home Mike is up and both boys are pretty much ready to go. This morning Michael was eating cereal at the counter,and the hunt was on for Nicks other shoe. Daddy had found one, and when I came in he was in the process of looking for #2. I found it in the playroom, and we got jackets on,sippy cup,a change of clothes, and we were off. I got a good word from Nicks teacher this morning. He feels safe enough to go to her when he gets uncomfortable. He holds her hand, and squeezes it when he feels the need to. Today he did not even cry when I left!!! At daycare I always had to leave him there screaming for me. I think he is going to do well in this school! It was good news to hear!!

I get home around 8:30 and then sleep until around 3pm. So, I am able to see the boys before they leave for school, and I tuck them in bed at night. As for work, we just all seem to work well together. Last night we were steadily busy until 5:30am. At that point, we were rather tired, and I just had the guys do a clean up, and get ready for day shift to come in. I am just hoping that we are allowed to continue with this shift schedule-it stinks when you get started on one shift,and then stop it after a few days. We are doing as much as we can do until we get too tired. Then it can become a question of safety, and we need to take a break for a while.

Mike and Michael are at soccer practice now. Mike has taken on coaching an additional team, and NO,I am not the Team Parent for both teams...I can barely keep up with our own team! Nicholas is here with me having fun playing with the blinds. Well, I am gonna get dinner finished and get the boys to bed. We are doing well this week.

Piano Man

We caught Nicholas playing this little piano tonight! He really likes this toy-it is one of the only toys that he plays with appropriately. Not totally surprising since he just loves music. Tonight while he was playing the piano, he did not mind daddy taking his hand and playing a little melody...usually he hates it when you try this and pulls his hand away. Daddy joined him and Nick looked right at him-not to the side,up,or down,but AT him. He would listen to the muffled notes through a blanket,take it off and then listen again. He put the piano to his ear and listened that way, then he would put it back down and copy with his voice what was played. He would also lay flat on the bed and play the keyes. He wanted to hear the music in every way that he could-and hear the way it sounded in different ways. He must have done this for at least 45min. I think one of our next gifts to him will be a little piano that he can sit at. He just seems to totally "get" music. He learns everything if you put it to song-he hums and sings these little diddies all the time. Who knows??


Here is a GREAT site to check out!!
http://www.autism-help.org/

Please check them out! It is a great site about living with autism!!

We had Michael's first game today. It was bad! They lost 7-0. We have quite a few first time players, so they need more practice. The team we played today was "stacked"-meaning they put all the best players on that one team. Knowing this,we don't feel so bad. Our kids are good,they just need more playing time together. The problem is that we normally only have about 5-6 of them show up for practices! I think that is upsetting to Mike as he knows they need more drills and more knowledge of positions,etc.,but he can only do so much when they fail to show up for practices. Here are some pics from the game today.

Big Changes on the way

Nicholas starts preschool on Monday! We had his IEP meeting on Tuesday, and he will be going to Evergreen Elementary School. He will go from 8am-10:30 am. They will teach him ways to communicate like signing and PECS, how to play with toys, and learn social things like taking turns. Two days a week, he will also get Speech therapy while at school. He seemed to like the classroom after he spent a few minutes adjusting. The school itself is very nice looking, and decorated in a Disney theme. We put it in his IEP that he will need transportation,but until we get a call from the school saying it is good to go for the bus,he will be driven to class. They said it could take two weeks for them to call us. I guess they have to get everything in order to be able to transport him. We are anxious to see what improvements this new chapter brings.

I am also starting a different shift on Monday. I will be working from 11pm-7am Sun-Thurs. I am not sure how this will affect my schedule as far as sleeping, but we will see. I will be home when the boys are getting ready for school, and here all day until after they go to bed, so maybe it will work out just fine.

Why ask for opinions????

When you don't want to hear them?? I am perplexed by this. About a year ago, I went to a bulletin board after doing some research on the internet regarding Nicholas. I laid it all out, what he was doing,what he was not, and asked for people's opinions--not just any person,but parents of kids with autism. They told me what in a sense I already knew. Based from their experience and what I posted,it sounded like Nick in fact had autism. They told me what I should do next, and offered support. I have even met with some of these ladies face to face. I went there,asking their opinions on my son, and was ready to face the cold, hard, truth.

Fast forward to a year later, and a similiar post from a mother shows up again. She is asking about her daughter,asking what we think. Her daughter has many delays, but she says that she meets the milestones "eventually". She sounded a lot like Nicholas. We offered our opinions, and said that it does sound like an autism spectrum disorder. A couple of people also told her that it sounded like she was in denial about her daughter--which in truth, it did. The mother ended up being very upset and got mad that our opinions suggested autism. My question is WHY did they even ask in the first place?? Obviously they were concerned,but mention something of a disorder,and they go crazy. I guess I just dont get it. By the time I went to that board, I had already had a sneaking suspicion that we were dealing with either ASD or some sort of sensory disorder. Maybe I was just never in that "denial" phase. I am glad I was not-because it would have delayed Nicholas getting the help he needs so much. Maybe we had learned from Michael's whole ordeal, that not knowing what is wrong is just more worrisome, and more stressful. I would rather know what is wrong,so that we can learn how to help our kids. Maybe I am just "wired" that way!

One of those days...

We are having a rough start here this morning. The boys were awake at 7am which is not all that unusual. Nick was fine through breakfast,eating like a champ. He actually ate one pop-tart. After that though, things have gone downhill. Nick is currently in his room having a meltdown. I dont even know what started all of this,but he is screaming. He is just in one of his funky moods where nothing goes right. All is quiet now, until the next time!

At our last appointment, the Dr. put in a referral to a nutritionist for help on his eating issues. Well, Mike got a call yesterday and they are full until next month. I also called the Clover Park school system yesterday to tell them we had not recieved a call from Evergreen Elementary to meet with Nick's teachers so we can discuss goals for him. As my luck would have it, that person was out of the office for the weekend and I had to leave a message. I just wish people would actually call when they are supposed to!

As for us, we are managing. Somedays Nick's autism is very noticeable-he just has those behaviors that are "classic", and those are some of the hard days with him. He has taken to licking himself when either frustrated or to calm himself-I cannot really tell just yet when or why he does this. It is just one of those things that has suddenly come about within the last couple of weeks. He has started to bite himself as well. Michael also bit himself quite a bit on his arms or hands. He would actually leave teeth imprints on himself! I think it is just one of those days where everything Nick does seems "pathological" versus normal three yr old behavior. Sometimes I have to take a moment and put aside his diagnosis and see his behavior as a typical three yr old. Those lines can be very grey at times, and you really wonder how much of his behavior is due to autism and how much is "normal" on any given day.

Michael is doing great at soccer! His skills along with his physical growth are really coming together. He is closing the height gap by leaps and bounds, and can now at least blend in with some 7yr olds on his team. His footwork with the ball is ahead of his peers I would say. He can weave himself past the bigger kids and one of his greatest things is his speed. He can really cover some ground very quickly when he wants to. He is doing well in school too. Aside from his antics this week, which I dont think he will do again anytime soon...he is moving right along.

Nothing much planned for today. I need to take Michael and get him some new cleats. He outgrew his ones from last season. He also needs bigger shin guards. Yesterday at practice he got kicked just below his old guards and it kind of put him out for a few minutes. He was a good sport about it though. He sat down for a few minutes, then "walked it off" and got right back on the field.

I am the Team Mom again this season. I learned quite a bit from last season and have my contacts now, so hopefully it will be less stressful! One can only hope right??

Happy Birthday Nicholas!!!

As you can now see, I have figured out how to do slideshows! The newest slides are from today. We had Nicks birthday party today, and from what I can tell he had a pretty good time. Only one of our friends ended up coming,but it was just enough really for Nick. Corey from across the street ended up coming over, so there was one more kid for Michael to play with.

Yesterday we were quite busy with shopping. We went to Wal-mart and bought all the party necessities. Treat bags,prizes,tablecloth,candle,ribbon, and also his presents. We got him a Spiderman that sings and dances, and a little rocking horse that makes noises too. After Wal-mart,we were off to Safeway to get the cake. We also picked up some chips and dip, and some sodas. Today was a mad house with setting up, and cleaning up the house before everyone showed up. I was not sure how Nick would act because he was pretty mad this morning-screaming,arching his back,head banging..etc. He has started that in earnest now. He falls to the floor,stiffens like a board, and just screams at the top of his lungs! Then, if he is still not satisfied, he finds a wall and BAM!

Tomorrow is his last day at the Birth to three center. It is kind of bittersweet..it is the ending of the first chapter and now we are beginning another one. But,Nick has outgrown the center in a way. He needs more. He will start pre-school later this month, and hopefully in a couple of months we will get a call from UW saying they can start ABA and speech. I am really looking forward to seeing what pre-school does for him. We are hoping it gets him talking more, and learning to deal with other people.

Another Evaluation report....

A couple of weeks ago we had another evaluation done on Nicholas to determine his eligibility for special ed. services. The evaluation itself was pretty short,only lasting about an hour,as compared to his other eval at the peds office which was 3 hours. It is not surprising to us that Nick has significant delays in communication, cognitive, and social development; so I am not in the least bit shocked...but part of me still is. To see everything written down on paper is just emotional sometimes. I am usually just pretty numb when going over the results; it takes time to sink in that this is life for us, and more importantly for HIM. I guess it just reminds me that even though Nick has made huge progress in the last year, we still have a long road ahead of us. His total language score was the age equivalent to a 10 month old. In auditory comprehension he scored at a 7 month level. His expressive language was a bit better because he uses a lot of echolalia-and that was at a 14 month old level. I just feel so lost sometimes. The world of special ed. seems so daunting-we have to develop an education plan for him with goals of what we would like him to accomplish. Simple things such as being able to function in classroom activities,playing with toys appropriately, requesting food items, and cleaning up. I know he will accomplish this and so much more,but it just seems overwhelming.

They are sending copies of this report to Evergreen Preschool, and we are supposed to get a call from his team of teachers next week. We will set up yet another meeting to develop his IEP. He will attend half-day preschool, and I suppose the other half we will have to coordinate with home therapies. He is now on the waiting list to receive ABA and speech therapies in our home from the University of Wa. We have another evaluation on the 8th of Feb. with Dr. Flake at Developmental Ped. I am going to see if we can get Nick in with a feeding specialist to do something about all his issues with eating. It never ends!

Weekend News....

This weekend I was officially another year older. Friday I had the day off of work, and I enjoyed myself thoroughly. I took Nick to therapy, and Michael to school. We came home from therapy around 11:30 am and basically just relaxed until it was time to pick up Michael. I picked him up from school, and then him and I headed to our new Wal-mart to spend my gift card. I went and bought picture frames(yes, that IS what I wanted) so that I could hang up all the pictures we had of the kids. I still need to get a couple more to hang up the ones of Taylor and Michael and some other family pictures,but I got a good start.

Saturday we just hung around the house and did mountains of laundry. I am not sure if some of you have seen the chore chart we made for Michael,but here it is:

The chart is a lifesaver for me!! I no longer have to "nag" him to do chores, I just ask "Have you done your chores today?" and Michael looks at the chart and does them!! Four loads of laundry goes by really quick with extra hands to help folding and putting away!! How did I ever live without my chart???

Now, if we could only get him to listen to me when I say "be home at _____"! Last night I got around to making a cake and I let Michael help for most of it. He was grounded for the last part for not listening, and told to go to bed early. He did not like that at all. In fact,both of them went to bed early because they were just being "pills".

Today was more relaxing than yesterday since most of the chores were already done as was the bulk of the laundry. I spent more this weekend than ever on food though. $186.00!!! The grocery bill just keeps creeping upwards as these boys grow upwards. Michael is in a size 1 shoe already, and Nick is not too far behind him. I also bought Nicholas a sticker board for his stickers. Since that is a big motivator for him I am going to start teaching him the alphabet with stickers. We have already done a couple of letters,and even items such as "apple" or "car" with the stickers. I am hoping it will work well for him!

Nick at his sticker board.


Both boys recieved haircuts last week!

He LOVES Michaels' swim goggles!!! :)

Another year older

I am another year older today. Wow. Big Whoop. I am not even counting anymore,it is getting too depressing and actually I would rather not even think about it. In my mind, I am still 20 years old and that is all that counts. I wont even get into what age my body actually is. I am forever trying to take that back since Things 1 and 2 happened. Things in that area have not progressed much.

Today was a good day. No, it was a GREAT day. I had the day off from work,and I was able to just do the mom thing. I took Michael to school at 8am,then came back home to get Nick ready for therapy. We arrived there about 5-10 minutes early and I started chatting with another mom who is new since I was last there. Her son,Tristan, is another "autie" and we hit it off right off the bat. I loved watching Tristan doing his own little "happy dance". His body movements are so similair to Nicks it just made me fall in love with the kid. I have grown very fond of these little flapper guys,and sometimes I think the world needs more of them.
We got to talking and comparing notes, and I asked her a few questions. Tristan as it turns out, is also a very picky eater and she told me that she has to put his food in a blender--which of course is similiar to our situation. She also has to put Tristan on a child leash due to the fact that he is a runner. She was saying she gets LOTS of stares from people, and I told her that we get them too. Especially at the grocery store. One lady made the comment "Isn't he too old for baby food?!" I dont go into detail with WHY we are buying babyfood for a 3yr old,all I say is "he has food issues". People have no idea of a certain parents situation,so why cant they just leave the comments and stares to themselves? I dont go around asking strangers in the store "why do you let your child eat that?". It is none of my business, so I stay out of it. I dont stare at your kid having a tantrum or make comments on your parenting skills, so dont do that to me!

It amazes me that in a couple of weeks my baby will be three years old. These are the days that I feel just a little sad for Nick. He does not get the immense joy of opening presents, or even understand the whys of getting them. I assume that he does like what we choose for him,based upon the amount of time he plays with the toy once it is out of the box; but it is hard to know what he TRULY likes. He has the same expression if given a Buzz Lightyear or a Spiderman. He has not the faintest idea of who these characters even are; much less have a favorite. He would be happy with a tv remote or a lightswitch. I think he would have a marvelous time if we just let him flick the switches all day long. But, regardless, he will always get a birthday party. I simply cannot choose to ignore it just because he could not care less. I would feel like the worst mother in the world. We are planning his party for Feb 11th, and am even thinking of getting a pinata....he just loves them so!

Retail therapy

Sam has come to Lakewood!!



Ok, so we finally all get out of the house around 3pm and took a family trip to our brand new Wal-Mart,only to find out it does not open until Monday!! We were feeling quite stupid and a little embarassed as we thought we were the only people to show up, but then there were others who drove up and were all set to go in the store, when I said "They don't open until Monday!" Apparently,the general public did not get this message. Michael was visibly upset and even started crying-he wanted so bad to spend his newly given allowance that he had worked all week for! Not ones to just go home-we opted to go to Target and give them some of our money. We went into the store and decided to not get a cart and plop Nicholas in;giving him zero chance to practice taking direction from us. To my amazement,Nicholas followed our commands like a good little soldier-trying to play with toys still in boxes,and basically just enjoying himself. He looked just like any other toddler in a toy store-running up to toys within his reach and exploring the lights and sounds that they made. Michael got some good practice at managing money,and staying within his budget. He learned the hard lesson that things can be expensive and you cannot always get everything you see. He learned to look at prices, and make the decision of whether to save money or buy something else. I was amazed that Nick was very tolerant and patient while Michael browsed up and down each aisle for about an hour. That is why I referred to this as "retail therapy"-both of them will need to learn this as a life skill. Nick was practicing how to act in public,follow directions,and move through a crowd of people without going into hysterics. Michael finally decided on a bag of Reeses Peanut Butter Cups,and we headed to the check-out. Michael was anxious as how to know how much money his item cost without having to speak to the cashier. We told him it would show up on the register,and not to worry,he would know. When it came time to hand over the money,he got a little nervous and I had to tell him what to put on the counter. I also told him to hold his hand out for his change,and he did that although I dont think he even looked at the cashier the whole time! We will need to practice up on these little social skills in the future-he has a habit of completely clamming up around even people he knows. Nick on the other hand had a great time following lines,and feeling the floor tiles. Ahhh,my odd little children!