America's Got Talent.....

Not sure how many of you all out there in blogland have heard about this extraordinary young man. He is 9yrs old and was diagnosed with autism when he was two. He would sing in the bus on his way to school and back. This was news to his parents because he did not speak at all. I could not watch this without tearing up. He is such a sweetie and I cannot wait to watch it this week to see how he does!

GO DAVID!! We are rooting for you!!!

Vacation...part 2

It has been an interesting vacation to say the least! Wednesday started with daddy calling the dealership at 8am to see what the heck was going on with our Jeep. The guy was getting fed up with all of our calls,but daddy did not care. He just wanted to get this whole thing fixed so we could enjoy our vacation! The repairman told him that he was several days behind on fixing cars, and he did not know when he could get to ours. Needless to say, this distressed everyone; especially mommy. We needed a car to get home with, since staying another week would be too much money. With all this stress going around I was getting rather un-hinged sometimes. Luckily, our friends understood, and did not take any of my outbursts personally. Mommy and daddy decided it might be best to upgrade our old Jeep;so we ended up trading in our old Jeep for a new(er) one. This newer one has all the luxuries! Anyway, we got the car thing settled, and then on Thursday we headed off to Silverwood Theme Park!!

We were excited about this day. My brother was especially excited since he was getting to ride the roller coasters for the very first time. All of us went on the first ride; which was some log splasher thing. I personally think they could have done without all of the employees talking over loud speakers...they were not using their inside voices! I tried not to come unglued; and I think I did pretty well. We all sat in this log thingie and went for a nice quiet ride..until we got to this big drop! We plunged down and that was the worst bath I ever took..no matter what daddy tried to say! I was scared for a bit, but I tried not to let mommy see, I was brave. After a few more rides, it was time to hit the water park. YEAH BABY, YEAH! That was MY domain!! We sunned ourselves, played in the lazy river, and ruled the toddler attractions! I was thoroughly over stimulated!! Mommy thought I would sleep easily that night; but she was wrong! I just could not settle down and she had to give me some of my sleepy vitamins.

The next day was the 4th of July; and we really did not do too much. We cooked out hamburgers(they smelled really good, so good in fact, that I never want to eat them, just smell them) and then went to meet up with our friends at their house. We went to Riverfront park to watch the sky light up. It was most fantastic!! If you love lights like I do; then you should see these lights!!! After you get used to the loud BOOM they make, it really is very neat!!! After the loud lights, we went back to the parking lot and waited for traffic to die down before heading home. I was introduced to "E" and "N"'s grandfather; who had a strange car that kept beeping. I tried my best to find out what it was so that I could fix it, but the dang thing would not stop beeping no matter how hard I banged on the seat. I never did find out what everyone was laughing about? I think that car is messed up and I tried to tell everyone that it was not funny; but they kept on laughing anyway. Maybe I missed something?? Nah, that car is totally busted!! Why else would it beep everytime I banged the seat?? Any mechanics reading this??

Today we just hung out again and relaxed. We are heading back home on Monday, and no; it's not funny!

The Vacation Saga Begins....

We started our little journey yesterday just after 11 am. All went smoothe with the road trip, and we were all looking forward to an uneventful vacation. I somehow got stuck on the phrase "It's not funny" for about 20 miles. Everyone was laughing at what they thought was just a random phrase I was saying. I kept repeating "It's not funny" over and over again. We got to our friends' house and stopped to chat for a while before heading to find a campsite. Daddy turned the car off, and we all got out. A little while later, daddy went to start the car again, and all it did was "click,click". I mean, I tried to tell them "It's not funny", but did they listen to me?? Of course not. So, we had to get help from the neighbors to get the trailer off the car, and hitch it to one of their trucks. So, mommy and all us kids stayed with our friends and played while daddy rode with the neighbor guy to the campsite. We went to Wal-mart to get some necessities to last us until we could get situated with everything and collect our thoughts about the car thing. After a LONG day, we all made it to bed around midnight.

We woke up today and started working the car problem. Mommy called our friends so they could come and get us, and see what we could do to fix our problem. Daddy went to start the car again to humor himself, but the car just made the same clicking noise. Daddy called around to a couple of mechanic places and to the Jeep dealership, as well as scheduled a tow truck guy to come pick up our car. Mommy made a phone call to see if we could get a temporary loan to fix the car and pay for the tow truck costs, and possibly a rental car. She still wanted us to be able to do some fun stuff on our vacation,instead of just be able to fix the darned car. So, the tow truck guy arrives and we all go out to meet him. He tells daddy to try and start the car again, so daddy does. What do you think happens next?? The car starts! We quickly pile in to two cars, and follow our friends to the dealership. By the time we get there, their service dept. is closed, and so is the rental car places. Stranded. At the dealership. We figure out a way to get 8 of us back to the house, with leaving the Jeep at the dealership. After "T" dropped off his wife and kids plus my brother back at their house, he came back so that mommy,daddy, and I could go to the airport to get a rental car. This was fun for me...a big windstorm came and I was cracking up because the wind was spinning my pinwheel SOOOOOO fast!!! This was the funnest part of the day by far!!! Long story short, we got a rental car for a couple of days until ours can be fixed. After that, we went back to the house and all pigged out on pizza. Except for me; I don't care much for pizza. Too messy. Now, we are back in the trailer, getting ready for bed. It was another long day, but overall, better than yesterday. Stay tuned..more to follow!!

1 Week of Enzymes

They seem to be helping! Along with the rice milk. Today was the first day that I can remember that Nick had solid poo all day long. He is also not pooping as much as he was before. He was pooping sometimes four times a day; somedays he had a poop in every diaper. Mike is even convinced that enzymes seem to be helping him. Nick has also tried some new foods this week. He has now added ham and hot dogs to his growing list. Feeding himself is still a challenge that we are working on, but he has made progress in that area as well. Talking is more or less on his own terms. We have heard him say things like "oopsie" when he drops things, and he sings a new song now. It is a different version of the "clean up" song...Nick will sing "Line up, Line up". Today he did that while arranging drink cannisters in a square pattern on the coffee table. He has also taken a renewed interest in his fridge magnet ABC toy. "BEEEEE!" he will shout as he puts in the letter B and the song starts.

We are all excited about our upcoming vacation. We are going to visit our friends in Spokane beginning July 1st and will be doing lots of fun summer activities. One of those will be a trip to Silverwood theme park. We are all looking forward to some fun time together as a family. Doing "normal" family things.

Day #2 of Enzymes

Yesterday I went once again to Super Supplements to see what they had for kids. I was looking for something to aid in digestion. Something HAS to give with Nick's mushy poo. He has had problems with poo for as long as I can remember. It is never consistent-he normally goes numerous times a day, and one of those might be solid-the rest are mush. Not to mention he had started doing his little "humping" of the floor again. The Gastro tells me it is "normal", but I don't think so. Call me crazy...but you can't tell me that pooping mush daily is "normal". So, I am on the search to find things that can help ease our tummy troubles. I found KIDS DIGEST in a powder form. It is supposed to help enhance digestion and absorbtion-just what we need over here! He gets one little scoop full(and the scoop IS little) mixed in with juice once a day. So far, so good. He seems to be tolerating it well, and drinks all of his juice. I am just looking for something to help my poor bubby's tummy!

Hi there!

Mommy has not had a chance to update in a while. I have been doing all kinds of stuff too! Daddy and I invented our own little game and we just love to play!! We chase each other and he pats me on my behind and says "Butt!". Sometimes we even get my big bro in on it. One day last week while mommy was at work; daddy came up to me and said "Hi Nick!" and I called right back at him "Hi Butt!". Mommy says I am getting a sense of humor on me; but honestly he DOES say "Butt" all the time-so that must be his name??

I am also learning to feed myself. It is kind of tricky, but I think I am getting it. It is hard because I get so excited about learning a new skill that I tend to "Tense up" and then do lots of flapping. That's ok though, cause Mommy and Daddy (AKA BUTT) taught me a new phrase to tell myself when I get like this. I say "Hands Down" to my hands. 'Cause when they get to flapping, they have a mind of their own!

Last Thursday night my brother decided that he would get sick. It was pretty "hairy" here for a while. He was saying that his chest hurt when he breathed, and he had a headache and cough. Mommy thought she might have to take him to the hospital, but after a little medicine and some rest; he was feeling much better. I think he ate something at school that bugged his tummy. I felt bad for him-he was feeling so ill that he could not even play with me! He just layed on the couch the whole evening until he went to bed! He is feeling MUCH better now though! Well, I am gonna go for now-I just turned on the ceiling fan and I simply love to watch that spin! Have a great day everyone!!

Petition to Fire Ms. Portillo!

Okay all you out there in blogland, time to make a difference! Here is an online petition to FIRE that awful teacher in Florida from my previous post! Let's keep this going...
Just click on the word "FIRE"

Perfection...

It was around 7pm and Nick had fallen asleep on the floor under the ceiling fan. This is his most favorite place to be. He relaxes himself while watching the hypnotic spinning of the fan. He is at total peace with himself and the world. He often falls asleep under the fan in this manner. I went over to him and layed down next to his sleeping body. I took his "Nicholasness" all in. His long curly eyelashes, his button nose, his fine blonde hair, and his smell. His oh so sweet smell. Most four year olds have lost that "baby" smell-but Nick still has it. I lay beside him and kiss him gently on the forehead and on his cheek. He is simply PERFECT.

Sweet Alex Barton; the Five year old who was voted out of his class by his hideous teacher, you are PERFECT just the way you are! You have so many people who will stand with you and your family! The whole WORLD is in your corner little man!

Beyond Words...

I don't know if any of you out there in blogland have heard of this story yet, but it is simply disgusting and a prime example of ignorance. A teacher in FLORIDA had a 5yr old boy who is in the process of being diagnosed with high functioning autism (HFA or Asperger's Syndrome), stand in his classroom and be "voted out" by his classmates! FIVE YEARS OLD!! Read on in the article and you will hear how most people view kids like Nick. They are viewed as "disgusting", "disruptive", "violent", the list goes on. This is what we have to deal with. This is an outrage! It is 2008 people..why are these children being taught how to "hate" anyone who is different? This little boy has been traumatized in a way that NO FIVE YEAR old should! Autism is not "Disgusting". I cannot type right now...I am too furious and heartbroken.

It's Potty TIME!

It's me Nick here! Just wanted to give a shout out to all the mommies in blogland-"Happy Mother's Day". Us kids would be nowhere without the mommies. So, all you kids and babies out there, give your mommies some kisses! I don't know about your mommies, but my mommy is just a gem. I am serious when I say that the woman does it all. She is so busy with my daddy,brother, and I that she hardly has any time to spin or twirl anything! That's just so much fun to do!! I think she should also just take time to watch the microwave-all those numbers, not to mention it spins on the inside. Pure satisfaction if you ask me. I ALWAYS have time to watch the microwave!!

See? Anyway, this same wonderful mommy is planning to ambush me tomorrow! She is planning an all-out war on my beloved dipeys(a.k.a. Diapers for all you grown folks) This CAN'T be!! She is wanting to get rid of these things and get me to wear UNDERWEAR!! BLECH! My brother wears these, and I must say, I think they are boring! I am so going against the grain on this one. I let her win the food battle, but that is where I draw the line! But then again, all the food tastes so good..especially cake! You all have got to try that one...you won't regret it! It's kinda weird, but it tastes soooo good! Maybe I will give this underwear thing a try; but that does not mean I have to like it! Well, I better get going before mommy catches me on her computer. Then I will really be in trouble!

In the Trenches with Potty Training...

We had an appointment with the psychologist yesterday morning to discuss potty training Nick. To put it simply: It is not going to be easy. We are prepared to start intensively this weekend. She advised us to "set-up camp" outside the bathroom. Section off that part of the house, and put some toys, and a naked Nick as well as each of us from the time he wakes up; til the time he goes to bed. We purchased some strong reinforcers from Target. Since he does not care too much about any type of sweet rewards, we went for the material ones! We have started him already on a potty schedule. We have the schedule posted on the wall outside the bathroom and write down every time he sits on the potty and every time he goes. It is not going to be pretty this weekend; but if we get it done, that is one more major hurdle we have crossed. He is doing good on his supplements. Yesterday he came out of his room and said "Hi" to daddy as he passed by him. Today before he left for school he replied "I love you too" when Mike said "I love you!" He did not care for the vitamin supplements in his milk, so I have switched to putting them in his juice. That seems to be fine with him, and he drinks it right up. Other than that,not too much else to report. I have posted a video of Nick doing what he does best. He LOVES to spin our phones. If it ever becomes an Olympic event, he should take the Gold medal!

Pleasantville

No, we did not move! But that is where we have seemingly resided with Nicholas the last few days. The last few days have brought some amazing results.

Monday: He had his ABA therapy at UW. We have been working since last summer to get Nick to imitate on a regular basis throughout sessions. He NEVER did it. I mean, he would do it once or maybe twice, but that was it. Monday, I kid you not, he did EVERYTHING she did..with very little prompting, in fact, it was almost none at all. She said the session was a huge success!

Tuesday: I can't count how many times he came to me and said "I want cup"; he is very good at that now. Did I mention he looked at me every time I called his name and stopped spinning objects?

Today: Another huge success. He went with me to get my haircut. Now, I dread taking him on these appts. because he has nortoriously hated the hair salons. This time however, he thought it was hilarious. He was looking at everyone around him, smiling at himself in the mirror, laughing at me when my hair was funny looking. Michael is having to constantly say "Nick! Get out of_____, or Leave _____ alone!" This morning, every time MIchael was out of his sight, he cried. Mike found them this morning sitting in their room together. He asked why Michael had not come out, and Michael said "Every time I left, Nick cried. So I stayed here."

We know that he will always be autistic-that much we accept. We are not trying to "cure" him. We just want him to get better sleep, and be healthier. If that makes him function a little better, then it is a plus.

Sunday Ramblings

Some things are just better lined up.
I have changed up the blog a little bit. I thought it was time for something new. Well, it is going on Day 3 of Melatonin, and all I can say is, WOW! Nick has slept two nights in a row!! HOORAY! We started him back on 1Tsp. of Cod Liver Oil as well. He is doing much better. Today Mike was playing around with a thing of breath freshner and wanted to show Nick how he could get it to spin on his fingers. Nick saw it and suddenly said "BAM!". We were a bit confused until I noticed that Mike's hand was in the shape of a gun. I have no idea of where he could have seen or heard a gun before, (maybe from Michael and his friends playing), but something connected with him and he put it together.
He has also been coming up to me a lot more and saying "I want cup". I mean, not even stopping to think about what to say..just saying it so easily. Not just saying it, but looking right at me when he says this! Michael has even said "Nick is so much HAPPIER now!" Amazing what real sleep will do!

2:41 a.m.

And Nick is still asleep. So far, so good.

In our quest to find natural ways to help Nick, we came across this:

It is basically vitamins. Click here for the link. For those who do not know, ASD stands for Autism Spectrum Disorder. I don't know if it will help him or not, but it is worth a try. The paragraphs below summarize the product.
Many children with Autism Spectrum Disorders (ASD) have multiple vitamin and mineral deficiencies. Our ASD Vitamin/Mineral Powder is specifically formulated to help counteract these deficiencies.

Several other companies also offer vitamin and mineral supplements. However, these supplements have many disadvantages. Some of these supplements are sold in a liquid dosage form. The problem with liquid supplements is that many vitamins and minerals are not stable in a liquid for more than a couple of hours or days. As a consequence, the patient may not receive the correct therapeutic levels from a liquid supplement. Also, to keep costs down, most supplements are made from inexpensive forms of the vitamins and minerals. In many people, these inexpensive forms are poorly absorbed and some can encourage yeast overgrowth.

Another problem is that many supplements are designed for the general population. These supplements do not fully meet the unique nutritional needs of a patient with Autism Spectrum Disorder. Lastly, and perhaps most importantly, none of the supplements we have tried taste very good. As most every parent of a child with ASD knows, it is not easy to get a child to take a bad tasting supplement. When we set out to formulate our ASD Vitamin/Mineral PowderT, we made sure to avoid all of these common problems.

Because Lee Silsby's ASD Vitamin/Mineral PowderT is added to a liquid immediately before serving, the vitamins and minerals have no chance to degrade. In addition, we use only the best forms of the vitamins and minerals available, and our formulation was designed in conjunction with several DAN! practitioners specifically to meet the needs of the ASD patient.

Lastly, through more than a decade of flavoring children's medications, we have developed the ability to make almost any medication palatable. Our expertise in flavoring medications insures that our ASD Vitamin/Mineral PowderT tastes great. It is available in citrus flavor or unflavored to meet the requirements of the Specific Carbohydrate Diet. Our formulation is free of gluten, casein, soy, sugar, artificial flavors, artificial dyes, and preservatives.




Each dose of ASD Vitamin/Mineral Powder™ contains:Click here to hide ingredients...

Chromium (as Chromium Aspartate) 200mcg elemental Chromium
Selenium (as L-selenomethionine) 200mcg elemental Selenium
Molybdenum (as Molybdenum Glycinate) 150mcg elemental Molybdenum
Zinc (as Zinc Amino Acid Chelate) 30mg elemental Zinc
Magnesium (as Magnesium Glycinate) 100mg elemental Magnesium
Calcium (as Calcium Citrate) 420mg elemental Calcium
Vitamin B-1 (as Thiamine HCl) 10mg
Vitamin B-2 (as Riboflavin-5-Phosphate) 15mg
Niacin (as Niacinamide) 40mg
Vitamin B-6 (as Pyridoxal-5-Phosphate) 25mg
Biotin 150mcg
Pantothenic Acid (as Calcium Pantothenate) 100mg
Folinic Acid 800mcg
Vitamin A (as Vitamin A Acetate) 5000 IU
Vitamin C (as Sodium Ascorbate) 500mg
Vitamin D 200 IU
Vitamin E (as Vitamin E Succinate, natural) 200 IU

We got a call from the psychologist today, and we have an appt. set up for Friday at 9am. We got his stool sample results. Everything was normal.

Melatonin

Today I took Nick back to see Dr F. We had a lengthy discussion on how Nick is progressing. The words "Classic Autism" were thrown into the conversation. Basically it means that if Dr. Leo Kanner himself had seen Nick back in the 1940's; he would have diagnosed him with autism. Classic Autism is on the severe end of the spectrum, and comes with such things as Mental Retardation. I, for one, do NOT think Nick is mentally retarded. We will not give up on therapies of any sort. We will NOT give up on Nicholas. He wants to be seen and heard. I knew in the back of my mind that he fit more of the classic autism than anything else, but just hearing a doctor say it was very different. But, Doctors don't know everything. The brain is still very much a mystery, and autism is even more of a mystery. They don't know our Nick!

That being said; we did have some issues that need to be resolved. We started Nick on Melatonin tonight. Melatonin is a natural hormone produced by the body to regulate sleep cycles. Kids with autism often do not produce enough of this hormone; and that leads to erratic sleep. Nick would spend sometimes 2 hours in bed stimming off toys, light switches(we had to unscrew all the light bulbs in their room-he figured out the switch cover and would constantly turn the lights off and on)or anything else he could find. Then, once he did fall asleep, he would not stay asleep. You can imagine how much a sleep deprived brain could function-not very well. It affects the short-term memory; so he is essentially having to re-learn everything from day to day. We are hoping the Melatonin makes recouperative sleep a possibility for Nick. This has been going on for a while, and we decided it was time to pursue options. We started him on 1mg tonight, and Dr F said we could go up to 6mg if needed. Wish us luck! Wish us SLEEP!!

Another thing we did was give Dr F a stool sample. NIck is still plagued about 1-2 times a week with mushy poo's. We want to make sure he is not having troubles digesting his food. We should know the results in a week or so. We also put in a referral for a visit with a psychologist. They are supposedly going to help us potty-train Nick. We shall see! It would be wonderful if he were to be out of diapers by summer!

Other than that; not much else is going on. I am also starting him back on Cod Liver Oil. Fish oils are very good for the brain-so we hope to see ANY improvement.

Word Full Wednesday

I am sitting here absolutely stunned at my four year old. He spends much of his days barely uttering a couple of sentences at most, and we spend much of the day trying to get him to talk. It is always a question of just how much information is making its way in, as he has a hard time getting it out (I hope that makes sense??) So, it is always a nice surprise to hear words coming from his mouth.

He is sitting here playing with his Fridge magnet toy and repeating every word it says. Then, he came up gleefully shouting "Cuppiieee, Cuppppieee, CUP! I want cup!" I think it is going to be a good day today!!

Nick TV

Make video montages at www.OneTrueMedia.com

Frustrated....very frustrated....

A couple of days ago I called Nicks' doctor to see if we could get a referral for a doctor in Portland to treat Nick. This Doctor came highly recommended by another mom and we were starting to get excited about doing some new treatments with Nick. We were going to do some of the biomed stuff. We just wanted to see if Nick would improve. We were not looking for some "miracle cure", but just improvement. Well, his Doctor just called me back this morning saying they would not cover anything like what we were looking for. They will cover the basic therapies like OT,ST, and ABA (which he is getting), but that's it. WE will have to cover anything outside of that. Just an initial visit to this Dr would cost $800. Excuse me while I bang my own head against a wall...

HAPPY EASTER!!

Nick here!!! Sorry we have not updated in a while; but mommy has been super busy. She started at a new shop and they have been changing her schedule all around. She never knows when she goes to work one day whether her schedule will change the next. I really like the one she is on now though. She can get me and my brother off to school every morning, and pick us up. She also gets to take me to all my therapies--which both of us really love. Her lunch time is right around our bed time; so she comes home and says "goodnight" to us as well! During her off-time(which there is not much of as you all know) she is going to school, trying to see if I can go to Little Gym(she says it would be good for me),taking me to UW and Speech, and doing stuff together at home too! Whew...boy am I tired just from thinking of all that! I did some new things this week: I identified spoon,bus,and ball on my flashcards. I am learning animal sounds(I like to MOO like a cow, and oink like a pig) and I really like shapes. I surprised everyone at UW by blurting out "triangle" when I saw one!

We are having a quiet Easter at home; which is just what I like. Too much noise makes me crazy. I got a book and a stuffed ducky in my basket. I might even try some of this stuff that they call chocolate. I don't know about that stuff; but I really like the plastic,purple colored wrapper my brother's basket came in!

Autism video

Does This Look Like "suffering"?

People read articles and watch TV shows where they always tell you that the individual "suffers" from autism. Yes, most people who are not on the spectrum or somehow involved otherwise, would say that this wording is appropriate. But let us reconsider what we think of in terms of "suffering" here. I realize that many individuals in the past and present DO suffer-but is it from their hands or the hands of others? Those institutionalized in years past would clearly fit the description of "suffering", but what would their lives have been like had they had the proper intervention and kept at home? That is not the face of autism today my friends. The word "suffering" is attached to autism not by auties themselves; but by us so called "neuro-typicals". We cannot fathom being happy or complete any other way-just the way most autistic people cannot fathom being any different. When I look at Nick, I do not see someone who is "suffering". Some might say "Well, he can't talk-so how do you know?" No, he CAN talk-just not always verbally. Look at his smile; he can laugh-and does so quite a bit. When he has fun-he jibber jabbers non stop in his happy tone of voice. For the most part Nick is like any other 4 yr old- He loves playing games like chase and peek-a-boo He likes waffles and yogurt He likes applejuice-and will even tell you "I want juice" He loves bathtime He runs the other way when it is time for bed He likes going to the park He loves-yes, he is autistic AND shows affection. He lives in a home where he is loved, he is happy, healthy, and is very much a treasured member of our family. So please, save the word "Suffering" for those who are truly doing so. Nick, as well as most people on the spectrum, do not think they are "Suffering" in any way.

Weger Look-alike Meter

MyHeritage: Look-alike Meter - Geneology - Pedigree

Weger Look-alike Meter

MyHeritage: Look-alike Meter - Geneology - Family search

Party Time!!

I ended up staying up until midnight on Saturday getting everything ready for the party. I baked the cake and let it sit overnight before I decorated it. It came out pretty good I think. So good in fact, that Nick actually ATE some of it! That was a very exciting moment-I think the last time he ate cake was at his second birthday. The only time he got a little fussy was when it was time to gather up all the kids to sing happy birthday to him. The noise level was too much, but he got through it and had some fun. Here are some pics:

The cake

The party room

Not too sure about this whole singing thing...

TOO LOUD! And did I mention there is a strange round thing in front of me??!

Hey, this cake stuff actually tastes pretty good!

I think I like this Birthday Thing!

Today I went through Nick's therapy room and got rid of some stuff. I organized it again(it had kind of gone amuck with things put in all kinds of places) and made room for the new items. Nick managed to dismantle the closet doors so they are laying beside the closet now. I am trying to air out the house as well due to it being 50 degrees outside and it was stuffy in here from months of cold and rain. The problem is that Nick really loves windows and screens(he has punched two screens out almost completely) so I have to really watch him when the windows are open. Michael is out playing with his two friends, and I am just listening to the TV right now. Not too much going on. Just relaxing after the weekend.

A Party for Nicholas

We are having Nick's 4th birthday party tomorrow. Birthdays are bitter sweet for Nick. We are amazed at how far he has come along in the last year-he has accomplished 90% of his goals on his IEP, we have begun potty training, and he has started eating more table foods. These simple milestones however remind us of how far he still has to go. I went shopping today to get decorations and presents. We are having a few kids over, a couple of whom are Nick's age or close to it. Nick still does not get birthdays quite yet. I keep his parties small so that he does not get too overwhelmed-but it will probably happen anyway. It is hard buying for Nick. At least, buying for him when I know everyone will see what he gets. The toys he likes are made for infants. I would have bought him all the light up toys I could; but I am conscious of what others might think, even though they know he is autistic. So, I wandered through the aisles and carefully chose things that a normal kid would get, and things we could use to work with Nick. Mr Potato Head's Vegetable Buddies, a game where you have to stack plastic food to make a sandwich, a tub finger painting set, and for pure fun, a Bouncing Tigger. It is not often that we have "outsiders" in our little world. Our house looks like a war zone with the dents and gaping holes in the walls, we have latches on the closets to prevent Nick from obsessively opening/shutting them, the light bulbs in their room have been unscrewed and there is a switch cover on the switch. All these things help us to lead as normal a family life as possible. People just really have no idea of what goes on behind the scenes at casa de Weger.

We are doing the party in a Shrek theme. Oddly enough, Shrek is the one character that Nick actually liked when we went to Universal Studios. Nick had a Shrek doll that talked when he was smaller, and he always smiled when the phrase "Eat,Stink, and be scary" came up. He LOVED Shrek. Since I could not find a Shrek cake, I am going to attempt to make one myself. I bought a normal yellow cake and white frosting and I am going to try and draw Shrek's face on the cake. I will post a picture of how it comes out. Wish me Luck!!

OT Appt and other stuff

Today we had Nick's Occupational Therapy evaluation. He performed rather well, and she got to see a lot of the things that Nick does. He colored with a crayon; which is a big improvement, completed a puzzle, and put some blocks on a string. (Although he also had to have the string STRAIGHT on the table, and liked spinning the little blocks) Then we went into another room and the abrupt change in schedule made him very fussy for a minute; but was easily coaxed out of the room. He REALLY liked the swing they had hanging from the ceiling. He got on that and completed another puzzle while swinging. She would do "1..2..3..Go!" with the pieces as he swung by her and drop them on the swing for him to reach. Nick really took a liking to her-she was very animated, and he responds very well to that. We should find out soon when he will start OT there.

Nick has had some ups and downs this week. Items that are now on his list of "good to eat" are:
Toast, Veggie Dip Puffs, mashed potatoes, and various kinds of cereal. We are not doing so much of the Gluten Free diet anymore. His digestion problems have seemingly gone away. We still do not give him milk though.

That is the "up" side. The "down" side has been his sleep again. He is going through another period of waking up at night..or should I say; early morning. He has figured out how to open his door even through the child locks. I found him in the hallway again this weekend at 3am with all the lights on. He has not been falling asleep until 10pm most nights this week. We have resorted to putting the baby gate up in the doorway to prevent him from getting out when we are all sleeping. No rest for the weary!

A Breakthrough week!!

Everyone is finally over all the colds, and we have had some wonderful progress with Nick. Wait, it is not just progress, it was a BREAKTHROUGH! After 3 weeks of touching, mashing, and getting the cereal closer to his mouth, we were overjoyed to catch this on video



He also learned to drink through a straw in therapy and has been doing that well now for a couple of weeks. Today was the first time I actually went out and bought cereal for Michael AND Nick. I also bought Nick some juice boxes so he can get more practice with a straw. We got a call from Mary Bridge Hospital where he will have his Occupational therapy. We have an evaluation with them on Feb 6th. We are also thinking of getting him back on their Speech therapy list. I took him off of it when he was accepted at the center he goes to now. Well, he seems bored with the current therapist, and spends most of the time just sitting there looking into space while she sings songs. I have been trying to find time to work with him a bit, and we have had lots of fun using the toys he got for Christmas. He has taken a huge interest in Michael. He will sit by him, lay next to him on the couch, watch tv with him, etc. It is nice to see Nick initiating some play with Michael as well. All in all, we are doing well. We hope to meet up with our friends from Spokane tomorrow and skate with them for a little bit. It has been a busy weekend.

Time for an update!!

Nick and I spent the first part of 2008 with a nasty cold. Of course, these illnesses always seem to set us back a few days with him and it takes him quite a while to feel like himself again. I am happy to say that we used more Motrin than Tylenol this time and avoided the chaos that happened with his last cold. He is just now starting to eat again, and with him feeling bad we put a halt to the home programs we had started. He just felt too badly to do anything but sleep..as you can see from the pic.

Now that things have settled down both at home and at work,I am getting his programs back on track again. One thing we have a a little success with is getting him to pee on the potty. He will now sit readily on his little potty while I am getting his bath ready. The whole time he is sitting there I reinterate what he is supposed to do..."Time to go pee-pee on the potty", or "Sit and go pee-pee on the potty". He has done it three times so far and we could not be happier. We continue with this, and hopefully will get him out of diapers by the time he is five.

Another thing we are working on with him is imitation. Kids with autism have to be taught how to do this, and when you think about it, imitation is how kids learn. Today I put a plastic giraffe on the table and moved it with my hand. After each time I said "You do it". It took a few times of prompting him, but after that he was doing it all on his own. We also played with our food, Mr. Potato Head, and clapped.
I keep track of everything in a notebook, and write down all our goals and when they have been mastered. Nick has also started to sit with Michael and watch TV with him. I need to structure and tweek our home program just a bit and come up with all kinds of things to work with him on. It is an ongoing process. Nick is such a joy, and his unusual way of thinking comes out in so many funny ways. This morning he noticed that Michael was not here, and began to sing "Go get Michael...go get Michael". He loves coming up behind Michael and squeezing him..almost like a hug. Here is what is going on in our living room right now:


I always love it when they act like normal brothers. So much of our lives is abnormal, but we do get a little glimpse every now and then.

Happy New Year!

We have started 2008 a little under the weather. I went to get Michael up this morning for school, and Nick was awake. Great. He needs to get ready for therapy anyway. I bent over and stroked his head. He was burning up. He had been congested a little bit in the morning yesterday but nothing out of the norm. Today, he was running a fever(102 after tylenol)and was pretty lethargic. He did not even want anything to eat-all he wanted to do was go to bed. Michael really wanted to ride his bike to school, but it was raining out and in the 30's so I told him "No way, I am taking you". He was a little miffed, but got over it.

Now, on to Nick. He slept for most of the morning. We did take him to his Speech therapy, and although he did not perform up to par(mostly just sat there), it gave me a chance to have a good conversation with his therapist regarding his eating. We have to start all over from scratch. This means going back to infant days. Nick has to learn to play with his food. Normal developing kids do this by mouthing anything they can put in their mouths. Nick never did that. The only thing I remember going into his mouth were his hands-he never put anything from the floor in his mouth, or explored textures in this manner. He has trouble touching anything that is mushy or slimy...we have to force him to touch food on his tray. It is going to be a slow process. We are starting with GF/CF cereal. I have to put a few on his tray, and we go through drills of touching them. Now we are working on picking them up. Eventually, we will get them closer and closer to his mouth. The hands and mouth are somehow connected in this way. He must first explore food with his hands, and we were told that his mouth will naturally be the next step. She said she has treated kids like this for many years, and is now working with a 13 yr old who still has issues with texture. So, this will be a long and tough road. As you can imagine, we not only have to deal with texture issues, but also with a kid who resists changes in his routine. Nick is so sensitive that he cannot see or hear me making any changes to his food-if it so much as smells different, is funny looking, has things dangling from the spoon, if it has a spec of something unfamiliar-he won't eat it. If there is a bowl of something unwanted on the table-he won't eat. I had to hide the food processor from his sight in the high chair because he refused to eat anything and kept staring at it and whining.

I called about his OT today, and they should be getting back with me with another evaluation date. We will be starting our own exercises in the meantime. Mostly putting deep pressure on his hands and getting them used to sensory input. We are also revving up our home program. Lots to accomplish in 2008! Here are some of our goals:
Get Nick eating more tablefoods
Start Potty Training
Identify more body parts
More speaking and requesting what he wants.

We have a lot of work to do!

Christmas Vacation

Both the boys are on their break and it is nice to have them both home. I did the last of the Christmas shopping today and I had some time to myself. Most of the parents there did not even have to think about their kids interacting with them, took it for granted that their toddlers were able to eat food off their plates, and a trip to the bathroom was no effort at all;and possibly even a little annoying. These things are made so difficult for Nick. Not that he seems to mind, but as he is getting older the gap seems to get wider between him and a normal 3yr old.

Lots of good things have happened over the last year though. Big steps forward. He has become more mischeivious-which despite being somewhat irritating at times, is quite a good thing as far as development. His head banging seems to be in a lull for now-which is a godsend. He started his second year in preschool, and seems to be moving right along with the goals that were set at our last IEP meeting. We started him on the GF/CF diet after visiting a nutritionist, a feeding clinic, AND a gastro-all who said there was either "Nothing to worry about" or "He is too severe for us"..regarding his poop and eating issues. The diet has seemed to really help with his poopies, and his SLP gave us ideas on how to introduce foods to him SLOWLY. We bought some gluten free cereal, and I put some in a baggie and smash it with a hammer to break it into bits. I then mixed it with the rice milk and low and behold, he ate some of it!!

We finally got the referral from his Dr for his Occupational therapy. We will start that whole process after the new year. It will mean another evaluation, more paperwork, but hopefully it will go quickly and we can press on with more services for him.

In the meantime; we are enjoying our time off from school and filling or days with playing, shopping, watching Christmas movies, and baking cookies for Santa. We wish everyone a Merry Christmas and a Happy New Year! Hug your little ones and enjoy this time with your families. See you all in 2008!!

Christmas Slideshow

Fantasy Lights

We took the boys to see the Christmas lights they have in Spanaway Park last Sunday. It was just what Nick LOVED. All those blinking, and colorful lights. He simply was in heaven-we could hear squeals and giggles of pure delight coming from the back seat. He was just so happy. He has completely gotten over his cold, and is back to his joyous old self. Including waking up at 3am, turning on the bedroom light and spinning his favorite toy....much to the dismay of his sleepy family. He goes through periods like this where he is up at 3-4am just doing whatever. I have heard tons of out and out laughter coming out of his dark bedroom-which begs the question...who or what is he laughing at?? It seems that this is a world that only Nick inhabits, and us "outsiders" are excluded. All I know is the air must be pretty funny at night. His glorious laughter is simply wonderful-even at 4am.

Nick has also made some progress in his self-help skills. He can now pull up his pants(he still needs help; as he only pulls the front),can pull his shirt over his head to get it off or on, and Mike has even taught him to open the fridge and get his milk out upon request. We are still in search for a home therapist, but we have a couple of leads that sound promising. His Dr also called me back today saying he put in a referral for an Occupational therapist. This will help Nick with his toe-walking,ear flicking, and all the other "inappropriate" stims he does. He is going to the speech clinic in University Place now every Wed. His schedule is pretty packed on his "day off" from pre-school. He has to be at UW for ABA therapy at 8:30am, that lasts one hour, after that, it is off to speech therapy for another 30min; by that time, it is almost time to pick up Michael from school. I have no idea of where we will fit in the OT, but we will. Other than that, not much else is going on. Here are some photos from last weekend.

Thanksgiving update

Our whole house has been sick with a cold for the last week, and poor Nick was just miserable. He missed school all of last week, and missed his Wednesday therapy. We do have some good news to share though. He will be starting speech therapy on the
28th. That will also be on Wednesdays after his UW sessions. We also have a tentative interview/meeting with a therapist who comes to our house set up for Sunday. I have been on the phone with a couple people this week regarding getting this therapy paid for by Uncle Sam. It is through the respite care program and a couple other branches are willing to pay for 40 hours a month. But, the one that I am in will only pay for 20 hours a month, and will only cover up to $10 an hour. So, it will more or less fall on us to cover the majority of the private therapy. I left a message with Nick's doctor on Tuesday, but I have not heard from him yet. No surprise there.

Other than that, nothing new to report. He really has been just battling this darned cold all week. His sleep has been all jacked up, and so has his eating. He is getting back to normal-but it takes him time.

Progress Report is in....

Today we got a report on Nick's progress with his I.E.P. in preschool. I will explain the "grading":

A 1 means: Not applicable
A 2 means: No progress made
A 3 means: Little progress made
A 4 means: Progress made;goal not yet achieved
A 5 means: Do not anticipate meeting this goal
A 6 means: Goal met

Here is his progress report from the school:

1. Nicholas will experiment with cause and effect when playing with 80% success for 2 consecutive data days. (4) (stayed same since last year)
2. Nicholas will independently nest four containers, or stack rings or blocks of graduated sizes with 100% success for 2 consecutive data days. (6-Goal met) (up from 4 last year)
3. Nicholas will demonstrate appropriate use of toys that have different properties on 3/4 opportunities w/ no more than 2 prompts. (4-same as last year; but he is interacting more as opposed to spinning)
4. Nicholas will shift attention from one object or activity to another with a)no more than 2 prompts by Oct 07 b) with 0-1 prompt by Feb 08. (6-Goal met)
5. Nicholas will play comfortably and appropriately in a small group with minimal prompts at 80% success for 2 consecutive data days. (6-Goal met. Up from a 4 last year)
6. Nicholas will follow classroom routine with no more than 2 adult prompts at 80% success for 2 consecutive data days. (4..same as last year; but more active this year)
7. Nicholas will indicate his wants and needs through gestures,signs,pictures,or verbal response on 3/4 opportunities with no more than 2 prompts (3...up from 2 last year)
8. Nicholas will express appropriate affection for peers and /or adults with no more than 2 prompts at 80% success for 2 consecutive data days. (4..smiles and laughs! Up from a 3 last year)
9. Nicholas will respond appropriately to social contact made by familiar adults with no more than 2 prompts at 100% success for 2 consecutive data days. (4..responding to name!)
10. Nicholas will appropriately express various positive and negative feelings with minimal prompts at an 80% success for 2 consecutive data days. (3...up from a 2 last year)
11. Nicholas will sit during circle time, small group time or other appropriate times for a minimum of 5 minutes or until the activity is completed; wait to be excused or ask appropriately to leave the activity with 80% success for 2 consecutive data days. (6-goal met)
12. Nicholas will choose a desired toy/activity using pictures,signs,or verbal request from a field of 4. (4+ on that)
13. Nicholas will imitate mouth movements/vocalizations/words by Feb 08. (4+)
14. Nicholas will identify an object/picture from a field of 3 by Feb 08. (4+)

Overall, he is doing far better than last year. On another note, our in-home therapist is not able to drive to our house-so we were back to square 1 by Monday. I asked someone in our autism group if they knew of anyone; and I got the names of three people. I will call them this weekend and set up a time for interview. This expense will be out of our own pocket-as our insurance does not cover private sessions. It will be roughly $25 an hour (4 hrs a week in home; or $400 a month). Mike and I discussed in length our finances to cover this. There is no way we can do without this therapy. Nick is making so much progress with the therapy and diet, I truly believe he will be high functioning-but he can't get there without help. We have cut down our cable to $50 a month, and doing some strict grocery shopping, and basically doing without anything we don't NEED. It's for Nick. We talked for more than an hour about all this. Mike has rarely spoken of "God", but he did this week. He said that God has a plan. We don't know what yet, but he does have a plan. It was kind of nice to hear those words come from him for a change. Usually it is me saying that.

As for Nick; that kid has an amazing memory. It might even be a photographic one. We can put a toy up, go out of the house for a few hours, and as soon as we get in he is making a bee-line for the toy. He remembers where it should be, and if it was moved while he was gone, he will look under every nook and cranny, and then take us to all the places he knows we hide things. I came home yesterday and found that he had placed his toys in an oval pattern on the floor of the "therapy" room. Blocks were in a line,things were stood up, and some things managed to get "clumped". (I.E. groups of 3 plastic fish)One of his teachers greeted him by patting him on the back the other day...Nick replied "No Hitting" to her. He has informed me on two occasions that he was "all done" eating. Our boy is starting to speak his mind...and what an interesting mind it is!

New Slide Show

Nick's World

I was able to get some video of him this morning doing some of the things that he does. The first video captures his "machine" voice. He will do this with just about anything, but mostly body parts (i.e. his arm), and geometric shaped objects like the picture frame he has.

In the second video you see him spinning one of his favorite toys. He also incorporated the picture frame in this sort of "play". It seems that he is looking at the reflection cast by the spinning toy in the picture frame. The round object on the table is a mint case that he has peeled off the stickers.

Some of his ramblings make words. As you can hear in the third video, he says what sounds like "Got milk". Another obsession he has started lately is the need to carry around a towel,blanket, or any other item of clothing. He also likes to stand things up.

Good News!!

Nick has made very good progress with requesting things this week! His therapist at UW is amazed at all he is doing! He can now follow one-step commands like "clean-up", "sit-down", "get down" etc. All of this has taken LOTS of practice; but he is now getting it. We work with him every day on simple things like greeting people (saying HI, BYE, Good Night,etc), and making him request things like Cup, cracker,etc. Things are connecting. Today I picked up some BK because I had school tonight and did not feel like cooking. Nick stood beside me and acted like he wanted a french fry. I gave him one (I know, a big No-No while GF/CF-but he did not eat it anyway) and said "french fry". He took it, smelled it, rolled it on his face, got it to the lips, then was done. Well, he came up to me, looked at me, and said "french fry". I was so happy and shocked that I gave him another one and lots of praise! We have also practiced a bed time routine of saying "Good night" before going to bed. I told him one night "Nick, go say goodnight to daddy". He went down the hallway, found daddy in the living room on the couch and stood beside him. He needed a little prompting with speaking, but he did it! He now says "Good night, I love you" on his own.

We also found a therapist to work with him at home. She was recommended by our therapist at UW. She has worked with many autistic kids and she was looking for more hours, so she asked our therapist if she knew of anyone. Well, 'C' e-mailed me today at work asking if we were interested. OF COURSE! She will be coming Tuesdays and Thursdays from 11am-1pm. I still have not recieved the report from the speech clinic, so I am not sure of how much he will get there; but I am just glad that things seem to be falling into place. We have had a good week over here. Ending with a couple of pictures of Nick just being himself.



He loves to watch things spin in the microwave :)
Also a current obsession with him is to carry around a blanket,towel,or sheet wherever he goes. This is his favorite sheet in the pics.

My Little Ducky

This Halloween was the best yet with Nick. He still does not get the idea of getting candy(much less EATING the candy) by going house to house dressed up in a silly costume, but he lets us do it every year. This year he walked the entire way instead of being strapped in his stroller, and I even took him up to a few houses so that he can participate. I tried to get him to say "Trick or treat", but all he could muster was a stare and a quiet "Tank U" (thank you) after some prompting. One house had a fog machine and lots of decorations outside. Nick stood at the edge of the sidewalk and exclaimed "WOW". He was a little hesitant to go through the fog, but he did it. It will be a while before he grasps the whole concept, but we are making baby steps.

Nick has been completely CF (no milk or dairy products) for a little over a week now, and he is adjusting very well to the rice milk. Thursday his school decided to give him regular milk despite me providing a thermos with his milk in his back pack every day. He had very bad diarrhea three times after that. I will have to write another note to his teacher directing them not to give him milk. We have noticed some good changes in Nick since starting the diet. Last night he did something he has NEVER done before. He went up to a kid with a flash light and said "My turn". He did this about 3-4 times and just kept following the poor boy. We were so happy that he actually initiated contact with another person; that it was all Mike and I could talk about after the boys left!

Friday we had an evaluation done on his speech through a local speech and hearing clinic. Nick was completing puzzles and playing with the toys and generally having fun. He would repeat words that the therapist said, and when putting puzzles together he would exclaim to himself "Good Job!". At one point he was so eager to respond with something; but just did not know exactly what to say; so he said "Goodnight, I love you" to the therapist!! He made great eye contact with her a few times while we were there and even touched her face. We should hear from them soon regarding how many hours he will get there. The clinic also works on food texture problems as well. I am so excited that we are finally going to recieve help for this!! We have been to a few doctors who said that he was beyond their services to help!! He WILL eat table food. Eventually.

GF/CF

This is the diet that we are now trying with Nick. It is Gluten Free/Casein Free, and a lot of autie kids are on it. One reason might be that gluten and casein are responsible for improperly broken-down dietary peptides-part of the opiod theory of autism-or that the immune system dysregulation causes an abnormal immune response, whereby the body reacts to these and attacks itself. So, we are going to give this a try. In the past week or so, we have noticed a slight improvement with him. Nick is more verbal. One thing that we have Nick on is Cod Liver Oil (CLO). Some research shows that CLO has a positive effect in raising attention levels.

We are just trying these right now. If it goes well(which it has so far) then we will look into making it more permanent. We have seen some changes in him and that is what keeps us going. He is initiating more contact with us, using more words, and has had fewer tantrums.

I just want my little man to feel better. If this helps, then that is great. I am not searching for a "magical cure" for his autism. In a lot of ways, his autism is beautiful. The way he goes about singing, humming, and his gentle personality are all a part of who he is. He is simply Nick.

Pictures from our walk for Autism

Our walk went great!! Thanks to everyone who donated...our team ended up raising over $600!!! It was a chilly fall day, but it was very pretty walking among all the changing leaves, and the huge campus of the University of Washington. We had a great time and raised money for a great cause!!

Here are some photos of Nick from the walk. Michael had a soccer game so he opted not to walk.


Nick loved the "Bubble Man"


These little toys were FREE! He had them on for the entire 3 miles!!




Our next car!! (Stop laughing!!)

Thanks to our good friends from Spokane for the wonderful team shirts! They came out great!! Thanks to everyone for donating!! We will be doing it again next year....and maybe some of you could fly up and join us?!

Another doctor visit

This one was an appointment made by me; no emergencies. I took Nick to the tummy doctor in hopes they could possibly shed a little light on his mushy stools. I had hoped that the chunkier food would firm them up a little bit, and it did for a while. But we are now back to mushy and I was just trying to figure out why. He had also had quite a few days with horrible behaviors-so I was wanting to get to the bottom of it. Well, I got Nick to the waiting room with no tantrums-so I was quite happy. He screamed bloody murder when it was time to weigh him, and was not liking all the noise in the little room we were in. After getting him weighed, I decided to tell the nurse that he was autistic and that's why he was acting the way he was. She smiled, and told me "I know. He has all the signs. We will just do what we can, ok?" After she got all his vitals(this took a while-he was barely cooperative), it was time to see the Doc.

I explained to him my concerns about wanting to make sure Nick was digesting all the nutrients in his food properly, make sure we were not missing anything in this puzzle. He asked me questions like "Is he allergic to anything", "What kinds of food does he eat?", "How many times a day does he poop?". I explained that he eats babyfood due to texture aversions, but we are moving towards chunkier foods. He felt Nick's tummy, and looked him over real good. He then went and consulted with his boss, and then they both came in. The other doctor looked at Nick and asked me questions as well. Between the both of them, they told me that since Nick has gained weight, and shows no visible signs of food allergies or digestion problems, they said he was perfectly healthy. I am not sure what to think about this. I am glad that they say he is healthy. In fact, I have been told that he is "Too healthy". I still wonder if he has digestion issues that cannot be seen? We are going to limit his dairy intake(no yogurt), and watch his gluten intake as well. Just maybe, it will help with some things.

Needless to say it is getting a little tiring taking him to these "-ists" only to be told he is perfectly fine. I took him to the nutritionist who said he was "too healthy for this clinic". I took him to the "feeding clinic" at this hospital as well, only to be told "Wow, he is a tough cookie. You might want to try another clinic", and "have you seen our nutritionist?". Now, the gastro doctor says the same thing. How can he not have issues when he goes from firm stools to mushy, then to loose all in one day?? He went weeks with normal stools, now we are back to square one?

I went shopping today and bought him NO Foods with wheat flour, or other forms of gluten in them. He got NO yogurt. I printed out a list from the internet of babyfoods that do not have gluten in them-and he is getting those only. We will see what happens.

Tomorrow is our walk for autism! I just wanted to say THANK YOU to those who donated! Our team raised $580 for autism research!! YAY!!

Peaks and valleys....

Just when I thought his head banging days were behind him, he starts it up again. I lay in bed yesterday morning, mind racing with all that needed to be done to get the four of us to Michael's soccer game at 11am. The silence of the early morning was suddenly interrupted by a loud screaming protest from Nick. "AAAAAAAHHHHH!" followed by a BANG! Nick had found the nearest wall to which to take out his frustrations. What a great way to start the day I thought. I got up and meandered down the hallway to the kitchen. It was going to be one of "Those" days already. I got both the boys something to eat, and then started preparing Nick verbally about what was going to happen that day. "Nick, we have to get dressed and go to Michael's soccer game" I told him as he yelled at me on the way to his bedroom. He did not want to get dressed this early in the morning. We managed to get everyone ready and out the door by 10:30.

Nick is fine until half time when suddenly 13 kids come off the field and gather around us for snacks....he gets visibly uncomfortable at all the commotion and starts crying. No other thing to do than just to deal with the crying while everyone looks at me as if to say "Aren't you going to soothe your child? Why is he crying?"
Somedays I just go around wondering "What is going on with this kid today?" After weeks of reprieve from head banging, he is now doing it again. He was stimming for most of the day, and when I tried to get him engaged with me, he persisted with throwing things to the floor, and just not paying attention at all. All he wanted to do was flick switches, open/close doors, and wander around with a blanket on his head. My whole day was pretty much spent keeping my frustration under control. I just kept thinking "Just.......QUIT.....with.....the....stims...I can't take it anymore!" I spent most of our session together just trying to reach him. What the heck happened??!! I am usually able to get eye contact from him when he is focused, but yesterday he was all over the place. I had to grab him and MAKE him look at me-once he did that, he would speak, or do something else I wanted.

Last night after he ate his dinner, I decided once again to give him the CLO. I stopped for a while because I was not sure if it was having any effect on him. Today, he was completely different.

He started the day off with coming to get me to play with him while I was in the kitchen. After playing for a few minutes, I went back to doing dishes. He came up to me, stood beside me, and said "Gimme Hug" in his quiet, Nicholas voice. Today, he managed to say several phrases appropriately...
"All Done" while I was playing with him
"Stop it" to Michael in the car
"No bed" when I put him in a "time out" of sorts after banging his head.

Somedays I feel like maybe we are not doing enough for him. Others I feel like we are doing just fine. We have switched him to powdered milk, started back with our CLO and vitamin supplements, work with him everyday on the most simple of tasks, send him to pre-school, and try to get him de-sensitized to table foods. I found some old pictures of Nick last night when he was a baby, and actually EATING...more solid foods than he does now...

Nick-11 mos old; eating a biscuit


Look at that! My baby eating crackers and cheerios!

SSI Update...and trying something new!

Yesterday I had the day off from work, and I took advantage of it. I woke up early and got the boys ready for school. For Michael, this was a nice change and he loved that mommy would be driving him to school. For Nick, this was an unwanted change in schedule. He did not like the light turned on in their bedroom, and protested by covering his eyes and crying. This was a major upheavel as far as he was concerned! I was shocked that he managed to eat some breakfast, because he refused his cup. We got everyone shoes, jackets, back-packs, and we were ready to go out the door. We left the house with Nick carrying a comforter(he screamed when I took it--so what the hell??)Of course, I must add that before all of this I had to catch him as he ran at top speed out the door and straight for the road.

By 8 am both boys were in their respective schools and ready to start the day. I came back home, did a little housecleaning, and then had to get everything ready for my appointment with the Social Security people to see if we qualify for SSI. I had to bring bank account statements from July to Sept., Mike's Life Insurance POlicy, and Pay stubs from both of us from July to now. For once in my life, I actually HAD everything! I never imagined myself waiting in line for government help; much less have a CHILD who would have a qualifying condition. But; life did not ask me for what I wanted. I was given some paperwork to have Mike sign and mail back to them-so hopefully Nick can start getting some extra help. It may not be much, but it will be something.

This evening I thought I would try some different food with Nick. I washed out one of the baby food jars and put some of the Gerber Toddler Meals in it. It was a beef and stars dinner with green beans. I mixed in a couple of green beans with the noodles, just to see if he could eat it. Success! We had a few instances where he gagged, but instead of giving up, he kept on eating it. I was so proud of him! How hard must it be to eat even the simplest things when you are sensitive to food textures??! I applaud him for giving it his all-he works so hard every day. He amazes me. He has been off of whole milk for almost a month-and has been drinking the powdered stuff without looking back! He has made some huge gains in the last month. Hard to tell if it is school, or milk related, but we are singing joyous praises over here! Nick answered his first question at school, and even told his teacher "Thank you" with no prompts! BIG CHANGES!

WALK NOW

ON OCTOBER 13TH WE WILL BE WALKING IN THE WALKNOW EVENT IN SEATTLE FOR THE CURE AUTISM NOW FOUNDATION. IF YOU WOULD LIKE TO DONATE; CLICK ON NICHOLAS

Two sides of Nicholas

Apparently Nick had a bad day at school today. Even the bus driver had heard of Nick's horrible day and attempted to appease him with her flashlight. That worked wonders, of course until it was time for him to get off the bus and give it back. The ensued screaming could be heard from inside the house-ahhhh, Nick was home. The school has started writing daily notes about his day and sending it home with him. Todays note was very interesting to say the least. Made for a humorous read. Here is what it says: Today in centers I: Helped with blocksgoing good so far We read a story called: Guess how much I love you ok For Group activity we: Had Speech NOTES: Here's the kicker Very Emotional day-haven't seen him get so upset before!One of two things can be envisioned here. Usually involves an object being hurled Did not want to give up activitiesYou don't say? It was cute and a learning experience!Yes, I am SURE it was! Nick has shown us another side as well. He is making some pretty big leaps in development--rather quickly! He has started to put words together to request things!! This week alone he has: Pulled Mike by the hand to the fridge, made him open it, and Nick put his hand on the applesauce and said "applesauce". He has also done this with MIlk,yogurt, and fish crackers. Today he pulled Mike by the hand and said "Up please,light on" That's FOUR words....together!!! I also got this on video a couple of nights ago:

SSI

We got a letter in the mail today regarding SSI for Nick. We have to be at the Social Security office on the 28th to meet with a representative. We have to get pay stubs from July 07 until now, along with a few other items. I am hoping we get it-we could use the extra money for some of his things. We also recieved a statement from UW about the cost of his therapy for the past 30 days....over $1,000 worth. How do people even afford this stuff? It is completely ludicrous. These therapies SHOULD be available to anyone. I think it is a tragedy that everything is different depending on WHERE you live. South Carolina is planning to pass a bill that gives FREE ABA therapy until children reach a certain age(5 I think). There WERE two centers near us that provided everything he needed AND took our insurance...what happened? They closed down. It is a frightening realization that many families are depleting their savings and going bankrupt just to get their child the therapies they need. What is our alternative?? To let our kids slowly disappear into a world that they themselves only occupy?? Why should we have to fight school systems tooth and nail to give these kids what they need?? Is it because many people still think autism=retarded..and therefor only worth teaching the basics? Or because we give such little consideration to people who cannot talk? How many times have you come across someone who perhaps had trouble speaking and automatically assumed that he/she was retarded or stupid? I can tell you that I will never,ever think that again. Always assume intelligence. Nick has introduced a lot of people to the true wonders and gifts that those with autism have. Somedays I think we learn more from him than he does from us.

S.W.I.M.

I got an e-mail today from one of the people who is involved with the Exceptional Family Member Program(EFMP)saying that there was an aquatic class/therapy for kids with special needs. I called the number that was attached and they take autistic kids! It is offered through the YMCA in Tacoma, and costs only $29 per month! The class is on Saturdays; so I would have to wait until soccer season is over. It would be from 9-12pm and it would also serve as a form of physical therapy. YES!! I will be signing Nick up for that starting in Oct.

He is doing good so far in pre-school. They send home notes everyday explaining what they worked on. I am hoping he gets more out of going this year than he did last year.

I am also in the process of switching Nick from whole milk, to the powdered stuff. He went through milk like crazy, and so far with the new stuff he does not drink half as much as he did.

In Memory of Sept 11th

Organization is key...

At least to Nick anyway. This is how we found his "classroom" this morning after he had been in there for a little while. Notice the geometric shapes made with the balls and the baskets..