Saturday, December 26, 2009

Pictures from a wonderful day!!










And for the first time Nick actually opened his presents on his own! It was also a day with no fighting...that was very shortlived. They were back to their usual antics this morning.

Friday, December 25, 2009

Merry Christmas Everyone!!

I cannot believe how fast this year has flown by! We have been busy little elves this week. Filling our days with lounging around, staying up late, and lots of family bonding time. Nicholas has dicovered the joys of emptying out all the dresser drawers when he gets upset--hence the lots of family bonding time spent re-folding clothes. We managed to get to the park this week once. And we have also enjoyed running errands and chatting with our neighbors. Our Christmas present to ourselves tomorrow: 2 newly installed baby gates. The fancy schmancy kind. These buggers are drilled into the walls. No prying down the gate by determined five year old hands. All closets are essentially blocked off. Our house is becoming increasingly locked up. We have locks on the washer and dryer, and window locks. Coupled with all the baby gates, no one can get IN or OUT for that matter. Which, is just how we like it.

Needless to say, the holiday break has thrown Nick a little out of whack. I now know how people can claim "temporary insanity". I now know how it feels. Spending any length of time with a 5yr old having numerous meltdowns a day will do that to a person. I had to go to the post office today...don't ask me how I got there...I think I was borderline delirious. I was so out of it that I even took with me the cause of my mental fog. Nick. He was in fine form in the constraints of his "smallish" umbrella stroller. His feet drug on the pavement so I had to *wheely* him all the way back to the car; as he refused to put his feet up. Yes, I dug out the stroller from the abyss of the shed. A mama has to keep her sanity. If I had not used it, surely there would have been a huge line at the post office, Nick would have had a meltdown and socked some poor soul in the back or rear, he would have been trying to escape out to the parking lot, and I did not want to revisit any of our numerous outings in which we were ill prepared(Safeway, DMV, his old school, etc.) Of course, he was a perfect little angel during this trip.

The holiday break did spark a little creative side of me though. One night I was able to come up with our very own version of the "12 Days of Christmas". Enjoy.

12 Days of Christmas

On the first day of Christmas my autie son gave to me:
ONE broken coffee pot
On the second day of Christmas my autie son gave to me:
TWO busy therapists
On the third day of Christmas my autie son gave to me:
THREE huge meltdowns
On the fourth day of Christmas my autie son gave to me:
FOUR new holes in the wall
On the fifth day of Christmas my autie son gave to me:
FIVE whole words
On the sixth day of Christmas my autie son gave to me:
SIX broken closet doors
On the seventh day of Christmas my autie son gave to me:
SEVEN hours of screaming
On the eighth day of Christmas my autie son gave to me:
EIGHT burned out lights
On the ninth day of Christmas my autie son gave to me:
NINE days of tantrums
On the tenth day of Christmas my autie son gave to me:
TEN torn up window screens
On the eleventh day of Christmas my autie son gave to me:
ELEVEN broken cabinets
On the twelvth day of Christmas my autie son gave to me:
TWELVE lovely smiles

Sunday, December 13, 2009

Doors....

What is it with Nick and Doors??!! Seriously. We have numerous doors that are either cracked or falling off their hinges. Trying to keep him from doing this is a herculean effort. Every fricken room has at least two doors (closet door and entry door), with the kitchen and bathrooms having even more with cabinets. This has been going on in earnest for over a month now. Leave. the effing. doors. alone! This has been the one thing lately that is literally driving me insane. We get done distracting him from one door, and he just moves on to another door somewhere else in the house. It is neverending. Doors are everywhere. They must be open. They must be closed. They must be slammed against the walls when you open them. Some have the added bonus of making unusual noises as they slam against the baseboard heaters. You can imagine what repeated slamming does to a door. If you can imagine that, then imagine what repeated slamming is doing to my sanity.

Saturday, December 12, 2009

Home Again....

I am home again after another trip. This time I went to St. Louis for a 4-day class to learn a new computer program we are using at work. I got home around 8pm last night, and Mike had ordered a pizza. YAY!! After spending a week in the "flatlands", I was happy when we flew right by my Mt. Rainier. It stands majestically above all the clouds showing her snowy white top. It is beautiful to fly by,even in the dark. To me, when I see that volcano, it means that I am HOME. Back to my three guys, and back to a routine. It's funny how we think that people like Nick are the weird ones who are stuck on their routines. Doesn't your routine during the day provide you a little comfort? Are we not a little anxious when we are forced out of our "comfort zone"? I know I am. I am simply a nervous wreck on the inside until whatever it is passes. When I go somewhere on a trip, I like to get everything settled and put away in my room so it feels like I belong there. Nick, although a little more severe than most, likes to feel the same way. His routine is comforting and he likes knowing what to expect. One of the reasons we have a camper is so that he feels comfortable. Nick hated going to a different hotel room everynight when we traveled. He did not know what was where, or even where he would sleep. Seems silly to most of us, but for him this caused him great stress. He likes to know "the lay of the land". He LOVES our camper. He knows where he sleeps in there, where he eats all his meals, and where his toys are. So even though his routine may be interrupted by a camping trip, he is not stressing over a "new" place. Don't we all like the feel of a familiar place like our own homes? I know I do. For me, there is really no place like home.

Saturday, December 05, 2009

Back to Normal.....Almost.

After 4 chaotic days of Thanksgiving break, we were looking forward to getting back to a normal schedule on Monday. But, as luck would have it, that did not happen. Mike had gotten Nick all dressed and groomed for school and they were waiting outside for the school bus. As I have said before, this is the absolute highlight of Nick's day. He LOVES the bus. So, when it did not arrive on Monday he was completely upset. Mike called the transportation people and inquired about the whereabouts of the bus. They said that it was a substitute driver and that they were here to pick up Nick around 10:45-10:50. Mike said that was not true because they had been waiting outside since 10:40. They said that they would send another bus to come get him, but by that time Mike was like "What's the point? He would only be in school for just over an hour." That threw off Nick's whole day. As he has gotten older, he is getting more rigid in his schedules. He likes them. It takes him a long time to recover from a schedule change. And until he does, he makes our lives a lot harder.

Tuesday was a little better. Nick went to school as planned. But, before he went to school, he managed to peel off part of the baseboard in the kids' bathroom. He also managed to peel off a layer of paint and more damage to the drywall underneath. Another door had also been taken off it's hinges. So, we called the housing office to have them repair our house. They came and fixed up the bathroom, and a couple of doors and screens. We still have several closet doors that are in dire need of repair. He just can't stop. We watch him constantly, and even his therapists are having a hard time keeping him away from doors. We are at our wits end with this. Then, just after we called the housing office for the repairs, we get a call asking if we want to move into another house on base. This *new* house is completely remodeled, and has a garage! YES! It is one-story, so we would not need to be worried about anyone falling down stairs, and it also has central heating. I remember central heating...how nice it was not to have to worry about anything burning up or melting if it is too close! We have had baseboard heating for 10 years now, and always have to check in the boys' room to make sure no toys, clothes, bed spreads, or anything touch the heater in the winter. Nick also won't have them to stand on. YAY us! We are scheduled to move in sometime in Jan.

This week-Nick ate bananas! What is even better is that he is now picking up his food with his hands! We are talking broccoli, chicken, bananas, pot roast, etc. He is eating all of it. He is also using a fork. It is just so good to see him picking up these things with his hands and feeding himself. He has really come a long way! Even better yet is he is now curious about what we are eating! Michael had a banana yesterday and Nick saw it. He proceeded to come into the kitchen screaming. We asked him if he wanted a banana, and if he wanted to eat. He went right to his chair and waited for it. I cut up half a banana and gave it to him. He dived right in and was happy. He is doing that more and more. He is getting frustrated at not having the words to express himself. We are working with him on this, and so are his therapists. One day we will hear what Nick wants.

Thursday, November 26, 2009

Happy Thanksgiving!!

Just wanted to wish everyone a wonderful Thanksgiving. Hope you are enjoying your holiday with your families. The turkey is in the oven, I am baking a Gluten Free cake with Dairy Free frosting for dessert, and we are just relaxing as a family and enjoying each others' company. Have a wonderful day and safe travels.

Tuesday, November 24, 2009

Challenging Days....

After a week off milk, I was happy to report that Nick had improved in just about everything. His poops were finally normal--been waiting almost 6 yrs for that little gem. Then Saturday hit like a ton of bricks. Started out just like any other day and Nick was happy. We ate breakfast and got dressed. We went over to the neighbors house. We came home. That is where Happy Nick ended. He was replaced by pissed off Nick. In one instant while I was cooking his lunch, he got upset and launched his sippy cup. The cup flew in the direction of our espresso pot. The next thing I heard is glass shattering all over the floor and the counter. Nick just laughed at the commotion. I had had enough. I sent him to his room, although I don't think he understood why. The grocery store was no better. He threw a tantrum and started knocking things off the shelf and hitting me. I told him no the first two times. The third time I said no and pinched him on his cheek. It got his attention and he began to soothe himself by chomping/sucking on his thumb. By the time I got home, I was done. Needless to say I had about 2-3 servings of cookie dough ice cream that night. He has a fixation on doors again. He has broken the door on our laundry closet-it is completely off track and has a chunk of wood missing at the top. He has cracked one of our kitchen cabinets almost clean off. It is now held together with two nails. He has damaged a few other cabinets, but not as bad. Somedays I really feel that I just cannot take it anymore. The constant stimming, and just everything else that goes along with him. Then there are days like today...when he greets me at the door with a big smile on his face.

I bought some Pedia Sure at the store so that maybe Nick could get in some extra calories. The day after he had some, he was back to mushy stools. I looked at the package and it was lactose free and gluten free, but still contained some milk based ingredients. Guess I won't be buying that anymore. One day Nick, mommy will get it right!

Friday, November 06, 2009

Fall is here...

You know how I can tell? Not from the thousands of red,brown, and yellow leaves that have taken over our neighborhood; oh no. I can tell from the cold viruses that have taken up residence in our house. We have gone through 3/4 of a bottle of Children's Tylenol. Nick gets green goop everywhere. He gets the concept of blowing his nose, just not when there is a tissue in front of it. You can imagine what we end up with. It's not a pretty sight. Michael has made it through this week and I am glad to report that he has been headache free. Nick's nose is as red as a firetruck, and the area around his mouth and chin are raw from his constant rubbing. At least he is eating still.

Moving on to better news. We got a call from Maxim a couple of days ago. They are the company that provide us with all of Nick's services. Including respite care. For those who are not familiar with respite care, it is a system that provides parents of disabled children qualified people to watch their special needs children while the parents can go out and get a break. Our respite provider called this week offering us a chance to go out Saturday!! Holy Sh*T I am so excited!!! To go out with hubby to a movie and possibly even dinner! Do such things even exist anymore?? Going to cut this post short for now. Have to get Nick ready for school and run some errands myself.

Tuesday, October 27, 2009

I'm Home!!

Ok, so I finally got home last Tuesday afternoon from New Zealand. I had Wednesday off so that I could adjust back to the time difference(afterall, we were 20 hours ahead in New Zealand)and be with the boys. It has been a crazy week at work. I was working 12 hours through the weekend, and coming home just drained. Today is the first day that I have had off, so I thought I would update on Nick.

He is continuing to make huge progress with his ABA home programs. He has mastered gross motor imitation. Which was and still is, thrilling to see. It is exciting to witness him copy everything we do. Mike will pat his head, Nick pats his head, I wave, Nick waves, etc. It is spontaneous imitation-with no prompts, and appearing very natural. He can now answer some questions. For example, if I point to a shoe and say "What's that?" he can answer "Shoe". The same with car,nose,mouth,eyes,ears,hair,etc. He is grasping the whole Touch Math program seemingly easily.It seems like he can come out of his world easier now and join in ours when the time comes. We have much less "hand over hand" instruction, and he is often better at following directions than Michael LOL! The potty is a work in progress still, but we will get there. He likes to help with the laundry. So much so; that last week he took a closet full of clothes and dunked them in the toilet and sink. He has a thing for water and loves to play with the faucets. Bathtime however is still somewhat tricky. I can't tell if it is the louder noise of the running water, or the process itself that scares him. Maybe some others who read this can help shed some light? He used to love bathtime!

Another thing now is that his school is requiring him to get updated on his shots. I honestly cannot remember the last time he got a shot. I think his last one was right around two years old. I know it seems silly, but I am conflicted. I think I will get him his shots, but not all at once. That would be quite an assault on him. He needs DTP, Hep B, HiB, MMR,Polio, and Varicella. We will see what the day brings. Right now Nick is dressed and waiting for the school bus. He has helped me with the laundry this morning, and had two waffles for breakfast. He is my little "Bubby".

Monday, October 12, 2009

Almost Home....

I have been away on another 3 week trip for work; and am due to be home this Sunday. I have kept in touch with the guys back home via Skype, and it has been wonderful. Not as great as being there, but wonderful to say the least. I got to hear Nick hummm contently, sing a little song, and jump like a Mexican Jumping Bean in front of the tv. On one day I even got to talk to Tracy-one of his therapists who was there to work with Nick. The whole time I was talking to her, Nick was using her as a jungle gym. Don't let him fool you--he knows exactly what he is doing and when we are talking about him--he flashes that "knowing" glance, or looks right into your eyes and gives a huge grin. This time, as we were talking, Nick was standing against the door looking right at Tracy as she talked to me. One of these days, Nick will tell us what is in that grand mind of his.

You would think I relish being away from the whole world of autism. But, I miss it. I miss seeing the new things Nick has learned. I miss reading about his days in therapy, but most of all, I miss HIM. I miss my baby boy's smiles, humms, the occasional word, and his laughter. I miss seeing Michael and knowing how his day went, what homework he is doing, and all those other little things. I know this was not a long trip, but I hated leaving again so soon after I got home from Turkey. I miss you Michael and Nick!!! I miss you all terribly!! Mom will be home soon! Be good boys for Daddy!

Monday, September 21, 2009

Another week down....

Hey we made it through another week!! It is another typical Monday here in the Weger household. Yesterday I decided to venture into unknown territory. I have been thinking about this for a few weeks now, but decided to go for it yesterday. I have been slowly trying to reduce the amount of chemicals we use in our household. Our steam mop works wonders, and our floor gets clean without using harsh chemicals. We also save $$ by not buying floor cleaner. Now I am wanting to go even further and try to make our own laundry detergent. It is really very simple. All you need is some soap(any kind you like really), something to shave the soap into small pieces (like a cheese grater), Borax, water, and washing soda. 1 bar of soap can make 5 GALLONS of detergent! Later on, as we go through all of our store bought cleaners, I am just going to make my own instead of buying more.

So, Sunday I took both the boys with me on my quest to find all the ingredients. It ended up being a fiasco (really? That is Normal for us) because we had to go to multiple stores. The first was the BX. A certain aroma was emanating from a certain 5yr olds backside and apparently it smelled so bad that he himself was gagging. At first I thought "great, another phase of something he is doing to stim himself". Then I thought maybe something in the store was setting him off...because he did not do this in the car. And to be honest, he can smell up his room, and all it will be is gas. I thought this could be one of those times. Not so. I caught a good whif as I lifted him into the car after going to Target. We came home and promptly changed him.

Today, after everyone was at school, I went and found some Washing Soda by Arm & Hammer and went about detergent making. It was not hard at all. We grated some Irish Spring soap(it can be any type, we just had that lying around), and put that into 4 cups boiling water. I stirred in the little soap pieces until they were melted. In a 10 Gallon Rubbermaid Container, I mixed in 3 gallons of warm tap water, 1 cup of Washing Soda, and 1/2 cup of Borax. I stirred it around until it was all mixed together. Then I added our soap solution from the stove. You have to let it sit for 24 hours, then stir and use. We have it sitting in the container with the top on off to the side of our dining room. So far, it is still smelling like Irish Spring and it is starting to get a little more solid. If this goes well, we just made 3 GALLONS of detergent for an extremely low price! And as our store bought cleaners run out, we will be making all of those ourselves as well.

Tuesday, September 15, 2009

Cost of Having Autism...

This is a breakdown of our insurance bill for Nick from August 3rd-August 13th. That is ten days of therapy:

8/3: Consult with BCBA(Head tutor) $250.00
8/3: Tutor for 3 hours $150.00
8/3: Tutor for 2.5 hours $125.00
8/4: Tutor for 3 hours $150.00
8/4: Tutor for 2 hours $100.00
8/5: Tutor for 2.5 hours $125.00
8/5: Tutor for 2.5 hours $125.00
8/6: Tutor for 3 hours $150.00
8/6: Tutor for 2 hours $100.00
8/7: Tutor for 2.5 hours $125.00 (So far, we are up to $1,400.00)
8/10: Rehabilitative Services(another word for Tutor) $262.50
8/11: Rehabilitative Services $225.00
8/12: Rehabilitative Services $100.00
8/13: Rehabilitative Services $250.00 (that is another $837.50 for those four days)
That is a grand total of.........
$2,237.50 FOR TEN DAYS OF THERAPY Most insurances DO NOT cover AUTISM, so this is what would have to be paid by the FAMILIES. THIS is what it takes to raise a child with Autism.

Our New Routine....

School has been going for almost a week now, and both Michael and Nick are settling in to the routine. This morning I have a few minutes of peace before I wake up little man again. I say again because he was already up earlier; around 6:30. He was playing in the curtains hung on the window by Michael's bed. I told him frankly to get back to HIS bed and go Night Night. Michael wanted me to drive him to school today, and for some reason he was already up as well. And dressed. In the same clothes as he wore yesterday. I told him to go change clothes, and that he cannot wear the same stuff again. He looked at me like I was speaking a foreign language. Of course I was. Mommy is not speaking "Male", which unfortunately is the predominate language in our house. I come from planet "Female" and there we change clothes every day without thinking about it. Apparently, those from "Male" have to be reminded. They also have to be reminded to brush their teeth. After he got ready I went ahead and did some dishes and I took Michael to school. There he gets a free breakfast. Great. Another meal that I don't have to feed him. Saves on our cereal budget.

Little Man loves riding the school bus. He is getting to be such a big boy. He gets on the bus by himself, all I do is fasten him in. Yesterday he was so excited he could not contain himself. We were waiting outside for the bus and he was a stimmy mess. These were happy stims though. Lots of humming,flapping, hand twirling, and doing a modified happy dance on the lawn. I am so happy that he is in the right school now. They know how to handle him. It is a smaller class, so I know he is getting what he needs. Makes me mad though to think that we lost an entire year due to the stupid move that people who don't even know Nick made for him.

We had another meeting with all of Nick's home tutors yesterday as well. They are adding more programs as he is mastering the old ones pretty quickly. Diane told me that they just started on identifying numbers like 13,14,and 15, and that Nick was already able to ID them! We are now going to start him on the Touch Math as Ana now has all the materials, and also work on spelling some simple words and learning to recognize those words have meaning. He will also have a tutor come in the mornings to help him with basic skills like dressing himself and going through his morning routine. It helps to add in new stuff to keep him from getting bored. It is hard to describe how much he actually likes this. When his tutors first started coming here, he would run and hide in his room. They would have to carry him to his "work room". Yesterday, he went in there ahead of Diane and was ready to do stuff. Ms Tracy not only got a "hi Twacy", but a hug as well. He gets cheeky with them and now goes into their goody bags to see what they brought. For Nick, these are all the more people to play and interact with. He is progressing much faster than I ever thought he would. The daily sessions of ABA are much more helpful than just once a week. Nick is already doing more stuff now than he was at UW.

Tuesday, September 08, 2009

Back to School..

Today is the last day of summer vacation. It is back to school tomorrow morning for both our boys. We went and met with Nick's teacher this afternoon and he got to meet some of his other classmates. One of Nick's old speech teachers came in at the end and she was happy to see Nicholas again! To find people like her is a blessing. She was disheartened as we informed her of what happened the past school year. His teacher is really nice, although I am a little scared at the idea of Nick having "homework". They will be learning to write, numbers, shapes, and all the other things in kindergarten. Except that this will be more at their own pace and the program is tailored to SN(Special Needs) kids. Nick's therapists will also be working on the same material. There seemed to be a good mixture of kids, and he was not the lowest functioning one there. I can't help but get depressed when all the other kids are higher functioning, and then there is Nick-staring out of the window.

As far as preparing him for tomorrow... I have told him that he will ride on the school bus tomorrow and go to school. "Bus tomorrow" he replied. We took him with us to meet his teacher and play with all the new toys. Kindergarten. It does not seem like he is five years old. This is just a reminder that time is passing by. It seemed that as long as he was in 'pre-school' everything was ok. So, he still is not potty trained...he is just in pre-school. Now, he is in SCHOOL. By the end of kindergarten; Michael was able to read. We just hope Nick will be able to write his name by the end of the year. Things are different. Somedays it is almost like hearing his diagnosis all over again. The uncertainty of it all is almost too much to bear. Give up? No. Never. One day at a time. One small step at a time. One word at a time.

The Blanket


This blanket has been in our family for nearly 25 years. It was made by my grandmother for my brother in 1985. My brother then passed it on to Michael when he was born in 1999. Michael LOVED this blanket, and it has accompanied him on many trips to visit relatives(this blanket is WELL traveled!). He referred to it as "deedee". Well, "deedee" was passed on to Nicholas when Michael did not need it anymore. "Deedee" is still going strong. My grandmother would be surprised that a simple blanket she made in 1985 for my brother, is now providing comfort for her great-grandsons that she never got to meet. Nick does not sleep with this blanket very often, but on this particular night, he was needing comfort from a gentle and loving soul while he slept. Maybe it is her way of "knowing" them. I do know that our boys know her from those hand sewn stitches that made that blanket.

Monday, August 31, 2009

Can Nicholas "See" Numbers??

We are learning more and more of what Nick may actually know. It is astounding to say the least. Yesterday we were playing with one of his new placemats. It has colorful shapes on it, and I was asking him what shapes there were. I was flipping the mat over to the other side when he blurted out "eight". So, I counted the shapes on there. Sure enough, there are EIGHT of them. Yet, when I took his finger to count them individually, he had some trouble. Mike thinks it could be coincidental, but then again, this is a kid who is already saying phrases in Spanish and Chinese. Every day we are discovering some sort of hidden talent or knowledge he has. Today he told his tutor that "W is for Wagon!" I had never heard him say the word Wagon before. That is the funny thing about autism. Sometimes stuff just flows out without any effort,other times he can't get his words out for anything.

Friday, August 28, 2009

School supplies, cleaning, redecorating..Oh my!!

You know we have been busy when I do not update the blog for over a week!!LOL! We have been busy with doing a little end-of-summer cleaning. It is amazing how much stuff you accumulate in closets. Last weekend our project was to clean out our bedroom closets. They desperately needed it. I must say, it felt good to get rid of all that "extra" stuff, and now be able to actually see what is in the closets..LOL! We also did a little redecorating around the house. The boys got new bedding and a curtain for their room, and we put curtains in our room, the living room, and the kitchen. For their bedding, Nick picked out SpongeBob. In other words, he looked at the package and let out a huge giggle at SpongeBobs face! Michael went with the camouflage motif.

Also on tap for last weekend was getting school supplies. I feel that we basically gave my paycheck to Wal-Mart with all the $$$ we spent in there. It was insane, but all for a good cause.

Nicholas is progressing very well in his therapy! I can't believe all the stuff he can identify now! Last week he brought us a picture book and identified every picture-with a point! We were freaking amazed!! We have been waiting YEARS for a simple "cat!, duck!, car!" and last Wednesday we got it! He can also name shirt, pants, Jingles, shoes, among others.

I am very tired, so I think I will cut this post short. Just wanted to give an update. More to follow later.

Tuesday, August 18, 2009

Touch Math....

We spoke with Nick's tutors yesterday and discussed adding some new programs. He is doing well with recognizing letters and numbers, identifying clothing, and is also engaging in more social behaviors. We have found out that Nick likes to be challenged. His tutors will be doing letters with him and then all of a sudden switch to numbers. He doesn't get them right every time, but he recognizes that those are numbers and not letters. In the interest of teaching him that numbers have meaning, and also to keep him from getting bored, we discussed adding a relatively new program called Touch Math. You can go to their website HERE and check them out. It is pretty neat and we are excited to start it with Nick.

Today was a good day for him. His fave tutor came to see him. I think he has a little crush on "Tefanie". He likes to run his hand over her long blonde hair and just loves to say her name over and over. It is really quite cute. He likes all of them, but she seems to be his favorite. He always says her name very softly. Right now he is having a blast blowing raspberries,silly talking, and gathering all his flashcards together.

Sunday, August 16, 2009

Escape Artist

This week was just plain crazy. It all started on Tuesday evening when I came home around 7pm. I pulled up the driveway and found a shoe propped in the front door. I came in and immediately asked Mike where Nick was. He said that he was in our bedroom with Michael. I said "Well, there is a shoe outside" and Mike answered "We were outside for a little bit today". He made his way back to the bedroom and I heard those dreaded words "Michael, where's Nicholas?!" and then "I don't know." We immediately began our search through the house. Bedrooms...Nope. Bathrooms....Nope. Livingroom & Kitchen....Nope. Backyard....Nope. No Nicholas. Now panic sets in. Where is he??!!Our only clue brings us back to the shoe propped in the doorway; he is somewhere out front. Wandering the neighborhood. He sees no danger in that; he just wants to be outside. Michael goes outside while I am still trying to fathom where Nick could be by now, and I hear the glorious words "There he is!" Nick was wandering around across the street in some other peoples yard. In just a diaper and t-shirt of course. And surely baffling the two ladies talking just a few feet from him. With Nick now safely home, our minds wander to all of the horrendous outcomes that could have happened. The main one being hit by a car. Nick has become very stealthy in escaping. He opens the door slowly, props it open with a shoe, and then closes it slowly. When I leave the house in the morning, I put up a baby gate in the hallway, so he only has his room and our room to go into. Nick has also tried to climb out his window. Yesterday our neighbor saw him getting his leg out his window and told her hubby (she was in her car, getting ready to leave) to tell Mike that Nick was escaping. Last night she came to me and expressed her concerns over otherwise well meaning people who don't know his condition, calling the cops. She knows we do everything we can, and that you can't possibly watch him every second. But she was afraid of CPS getting involved if that happened. It is becoming more difficult as he gets older and is more curious about things. Nick was never this adventurous before. We put the gate at the front door to prevent him from going out, but have not found a deterrent for his window yet. Fortunately he prefers to take the easy way out, so the door is preferred method.

He is also going through another hoarding phase. He will hoard food in his mouth for hours. Chewing it so much that it is nearly liquified. We are really baffled by this. It is very frustrating and takes an hour or more just to get a few bites in. Just one of those things that is very difficult to understand. Needless to say, our week has been challenging. We are finding out more and more of what Nick can do; and it is amazing to say the least. He apparently is learning spanish from his toys and even some chinese from TV. No kidding he has said words in both languages. One time at the store a chinese woman turned and said "He knows Chinese??!!" If she understood him, then apparently he can speak a little of it. My jaw hit the floor. He is also understanding some basic math. Iam talking very basic here, but shocking finding out what he really does know. He had four plastic toys strung together, he grabbed another one attached it, and said "Five!" It truly is amazing that with all his difficulties, he can pick up some of the hardest things easily. If there is a pattern to it, Nick will get it almost instantly. It definitely explains his love of letters, numbers, music, and there is even a pattern in foreign languages-and they have an added bonus of being sing-song like. He is even amazing his therapists. Of course I have to give them credit for his progress as well. He is constantly getting pulled from stimming and retreating while they are here. His tutors have done wonders. He has learned more this summer and made more progress in a few weeks than he did in his whole last year at school.

In other news, we are considering buying a house here while the market is so low. We have a few houses in mind and we are going to look at them today. In fact, I need to go so I can get myself and the boys ready. Have a great day everyone!!

Monday, August 10, 2009

E is for EVERGREEN!

We found out today that Nick will be going back to Evergreen Elementary School for kindergarten next year! I was so happy that I did my own Happy Dance!! He was much happier at Evergreen and they knew him so well. He will be in afternoon kindergarten this year. My mind is at ease right now knowing that he will be getting exactly what he needs and will not be completely separated from the other kids in the school. He can go out to play, and they will likely only have a few kids in the class, it should also be easier for him to have his aide in the classroom with him. I wish Michael could go there, but he only has one more year until middle school anyway unless we decide to hold him back for grades.

Nicholas did pretty good today in his afternoon therapy. The 1st session was a little difficult, but the screaming has definitely slowed down a bit. He is breezing through his programs and showing everyone just how smart he really is.

The oldest boys are watching a movie tonight-so right now the house is just kinda quiet with me and Nick here. Nick has had dinner already, and I am going to relax and watch tv tonight.

Sunday, August 09, 2009

Potty Training



This week we kinda just sprung it on Nick that he is DONE with diapers during the day. I went out and bought a whole bunch of those training underwear at Target; not Pull-Ups, those are just like another diaper and I want to be rid of diapers during the daytime; but actual underwear with a little more padding in the front for accidents. I put those on him after his morning diaper change, and we are going to the potty all day. I have to remind him every so often, and so far, we have only had about three true accidents. Most of those were my fault as I did not remind him for a while. But today was his first day wearing actual shorts over his undies. We went for a walk, and talked with the neighbors for a while. I told him "Nick it's time to go potty, let's go." And he gets right up, heads to the bathroom, turns on the light, takes his pants down(sometimes I have to remind him) and sits his little bony bum on the toilet. Sometimes he pees, sometimes not, but we are getting there. He is ready. He understands what we say to him, and he likes the feel of the undies vs. the diaper. He still wears a diaper at night for obvious reasons, but I don't care so much about that right now.

Tomorrow is my first day back at work and I am already dreading it. I have thoroughly enjoyed spending time with my boys. They are both so very wonderful in their own ways. Sure, they have their moments, but for the most part they are good boys. Wish Mike luck tomorrow morning when Nick realizes I am not here. He is going to need it.

Tuesday, August 04, 2009

It's Official....

My kids are weird. Michael is actually HOPING to have bloodwork done tomorrow at his growth checkup. When I asked him WHY? he said he wanted to see what his hormone levels are right now. Ok, me thinks he has been privvy to too many medical discussions..LOL! He explains it quite matter of factly to any new person he meets. He has even gotten injections right in front of his friends like it is no big deal. To him, it really is not a big deal. It has just been a part of his life for the past four years now. I am amazed at how "routine" things in his life have become.

I am actually shocked that I got an appointment so soon. Normally when I call them, Dr. M is so booked up that it takes a month or more to get in. That is what I was expecting, but in my mind I was thinking how nice it would be if we got in tomorrow. A few seconds later, I was asked "Is tomorrow ok?". My jaw dropped! "YES! Tomorrow IS GREAT!" Not sure how long it will take. We might have to do another bone-age X-ray "I LOVE X-rays" Michael told me, and they might need to draw blood. I know for a fact that we will need to renew his meds-and that could take a while. Dr M is always happy to see Michael and see how well he is doing. He has been seeing him since he was 18mos old. I trust him more than any other Dr-and Michael has seen him more than his primary Dr(whom I can't even tell you the name of-cause we always see Dr M!)

Nick is also having a good day today with Stephanie. I hear lots of "YAYS" and "GOOD JOBS!" I also hear Nick laughing. He has gone quite a while without a break now-which is wonderful. We changed up his program yesterday to incorporate more items at a time so he won't get bored. It seems to be working! We have Stephanie until 3pm, an hour break in which he gets lunch, and then Tracy comes from 4pm-7pm. A packed day for Nick-but it is doing him a world of good. He stays connected with us for most of the day, and that is necessary. He is getting a tremendous amount of help and it is making a difference. Why is it that the kids who need help so much have a hard time getting it?? Why is there such a huge amount of "red tape" that has to be gone through before we can get ONE aide for him in class? Why is it such a fight?? It is not just us who have to fight. EVERY parent who has a child with autism must put up an enormous fight for services. What about when that autistic child becomes an Adult? Eventually, Nick will grow up. He will still most likely need help. We HOPE that he doesn't; but he likely will need some sort of help. I can only hope that the future brings more services for autistic adults-as they are the forgotten ones right now.

Sunday, August 02, 2009

Before Kids...

It was much easier to keep track of things. Let me explain a little bit. We have a little monster who shall remain nameless; who likes to swipe items from all over the house in which to toss up to the ceiling fan. That usually throws the item behind the TV..which is sort of a "No Mans Land". No one goes behind there. You could go back there and discover items that you have not seen in months. For example, hubby was looking for his sandals a few minutes ago. Nick was in his chair eating yogurt and just laughing. He was not saying a word. Mike went all over the house looking for his shoes. One of my questions actually was "Did you check the toilet?" Yes, that happens when you have a child who likes to flush things. His answer was "He has not thrown anything in the toilet for a while now."

As the search continued, "After all, I JUST saw them earlier today! Where could they have gone...MISTER?!", Nick continued to laugh as he ate his yogurt. After checking the entire house, Mike moved the TV. There we found Michael's shirt, one of my CROCS, Mike's sandals, his hat, and a pillow. Today we also found one of Nick's pajama shirts in the trash. Sometimes when he cleans up, he really cleans up! We have found socks, dish towels, pants, and several pairs of shoes behind that TV. Little Mister is quick, and takes full advantage if you are busy and not watching him every second. Don't let his autism fool you. Somedays I am convinced it is just a farse and he has duped all of us!!

Saturday, August 01, 2009

We Are Home

It is nice to go on vacation, but it is also nice to come back home. After the last week of being in the trailer, the boys were glad to have their space back! And I believe they were very happy to get out of the car. Brothers are not always nice, and these two sure had their share of smacking and annoying each other. To be fair they really do egg each other on. NO and STOP have become very clear words in Nick's vocabulary-and very loud ones.

What we learned is that if we are going to live in an RV and travel when I retire, then we are going to need a bigger RV. One where we can all have some space to ourselves. Someone was always underfoot in the trailer. Although I do love it as much as I complain about it. We had some very good days and nights in that little camper. But it was nice not to be woken up by a coke bottle being hurled in your direction this morning.

The first thing Nicholas did when he stepped in the door was go and get his favorite toys from his room. He drug out his keyboard and his little CD player. He also did a little hop/skipping dance as he had space to move and walk around. Today I have to do some laundry, and get some items from the grocery store. I also have to start thinking about school shopping for both boys. The summer is passing by quickly and these lazy days are about over. I love the extra time with Michael. Last night we were curled up on the bed watching TV after 10pm. Maybe today I will also go and get a little pool to play in since it is pretty warm out. Or, maybe we can schedule a trip to the movies or to the zoo this week. Those are always nice times. Anywho, I promise to load up some new pics once I get the new laptop all set up.

Thursday, July 30, 2009

Better Days!!

Mommy got a NEW lap top for one!! YAY! It is a HP TouchSmart PC with a built in web cam. It has all the bells and whistles. Out with "Old Bessy", and in with new junior. It will be much easier to lug this one around the globe-and it has all of it's keys!! Another huge bonus. Some of you might remember THIS POST. In which case, no further words need to be spoken or written..LOL.
This week Nick got over his fear/anxiety over getting in the pool! He had a great time and for once he only had a tantrum when we had to LEAVE. We only recieved one ignorant comment. When one lady found out he was autistic, she commented that he looked like everyone else did. Not sure what she expected him to look like; but maybe we changed her views just slightly. Maybe she will now think twice about commenting to the parents whose child is having a meltdown in a store, or tends to just barge in after someone opens the door after we knock. Yes, he looks just like any other kid on the outside-that is why you can never judge based on appearence. Anyway, Michael made some friends here and so did I. We will be sad to leave them tomorrow, but it will be nice to get home again. I will upload some new pics when we get home and get settled in again. Lord knows that is going to be disrupting enough.

Friday, July 24, 2009

More Changes=More Meltdowns

These days the slightest change can send Nick into a full blown meltdown. If a toy is moved, if me or Mike step out of the room(I cannot even go to the bathroom), or even just out of the car-he completely loses it. We are talking total shutdown,screaming,screeching,clawing,drop to the floor, and our personal favorites;smacking and throwing. This also happens every time he gets a bath. He has become afraid of most things that deal with water. He also hates trucks, big RV's, and busses. Yesterday Mike was outside lowering our awning on the trailer and Nick was outside with him. I was in the trailer doing something and suddenly Mike comes in and shouts "You need to go get Nick right now." "Where is he?" I asked. "He took off that way when a big truck came by". Just then I heard Nick screaming at the top of his lungs about two camp sites over. I called after him, and he did respond by making his way back to the trailer. He slowly began to calm down as time went on and regained his composure further by a nice long sit around the campfire.

It just totally sucks. He has made so much progress, but no one sees that outside of the people that know him. Everyone else sees the kid who screams in the pool, screams in the bath tub, hits himself and shouts when upset, or worse; hits an unknowing passer by. He knows our "turf" at home and is familiar with all the places we go-so he rarely gets this bad. But in an unfamiliar store, he lets loose and looks like that "typical bratty child" that everyone says needs a good spanking. The heart break comes in waves. It is difficult to see kids his age and younger speaking circles around Nick, trying to engage him, or staring at him because he is acting strange. His actual diagnosis we can handle. Just the fall out from it really sucks. I don't know if it will be better a year or two from now, I certainly hope so. The vacation really has gone well considering all of this. It is just that it becomes so blatantly obvious that we still have so much work ahead of us, and that Nick is so far behind. Will he ever catch up? Or even go as far as to be able to work through his autism? There are just still too many questions concerning his overall development that we just don't know.

Wednesday, July 22, 2009

What We've Been up to.....


Relaxing

Swimming




Going Horseback Riding

Eating Ice Cream

Visiting a Petting Zoo

Tuesday, July 21, 2009

Only A Few Meltdowns...

We spent much of the day outside today. Going on nice long walks throughout the park trails and we even made it down to the river. Earlier this morning we went to the pool and that is where Nick had his first meltdown. He is wary of the water-so he screamed every time we got him in the pool. At one point he was actually doing pretty good holding on to daddy; then he got splashed on by another kid and that was the end of it. All other attempts to get him in the water were met with screaming. Nick did have a bit of fun just playing on the steps in the shallow end-so it was not a total wash out. Michael and I had fun playing games under water. We came back around noon and had lunch and a nap. Apparently Nick did not like mommy taking a nap and Mike said there were a few objects hurled in my direction. We got up and then went into Leavenworth to do some sightseeing. Since it was hot out, we splurged and had some ice cream. Mike had White Chocolate, Michael had Lemon, and I had Triple Chocolate Birthday Cake. All of them were oh so good. I might go for the White Chocolate if we go there again. Nick of course wanted none of it. Oh well-he was with us and that is all that matters. He had fun playing with the little colored ice cream spoons that they gave him. We walked around letting Nick decide which shops to go in. The only one that was picked out for him was the shop full of Christmas trees and decorations. The trees were all decorated and lit up-so he absolutely loved it. Lots of flapping in that store..LOL! I am hoping that Nick really likes these little trips. I know the changes are rough for him-which could be the reason for some of his meltdowns; but I hope that he has fun. It seems like he does. Just walking around with him doing his "silly talk" makes us smile because we KNOW then that he is having fun. I am just wondering what memories he will have from these experiences. And if he will ever be able to share them with us. I do think time to be just a kid is beneficial for him. Just as it is for Michael. We have no set schedules out here. No place we have to be. We have just done whatever came to mind. Come to think of it, Nick has coped wonderfully with all the changes. What we think of as relaxing with no schedule, Nick is anxious because he cannot predict what happens next. Even with all that, I am hoping that he is having a good time.

We went for a long walk tonight. It is peaceful. You can hear the river flowing below us, and the crackling of camp fires. I love the smell of the burning wood. Watching the embers float up in the sky as the fire crackles. Watching my boys get mesmerized by the flames. It is just so much darned fun! I just bathed Nick(he was dirty as anything with all the running around and climbing we did) and put him down in his bunk. He is once again PASSED OUT. I am enjoying these days-they won't last long at all!

Monday, July 20, 2009

VACATION!!!

We are enjoying a whole week with no appointments or therapies and getting some much needed relaxation!

The boys love the camper and for them this is the ultimate summer vacation. We are spending 5 days at a KOA campground and the boys have just loved it. Last night we made a fire in the fire pit and roasted marshmallows. We sat around the campfire and told some funny stories that we remembered, and just had a good time. Nick liked the fire and looked so cute sitting in his little lawn chair watching it. We took a nice long walk and listened to Nick jabbering and laughing the whole way. They both had fun on the nice big playground, and for once, Nick looked like any other kid out there. He did not perseverate on the spinny wheel like he used to. He slid down slides, and a major accomplishment was when he climbed up the rungs all by himself! Each time he ran by us he had a big ole grin on his face. He was having a ball. He had such a good time that when it was time for bed, he passed out in 5 minutes!! That has NEVER happened!! This morning we all spent some time in the pool and did a little basking in the sun. Will have some pictures up soon. Today we plan on getting in a little tourist action(Bavarian town we have never visited before), and maybe another campfire. They also have plenty of stuff to do here at the KOA for the kids-so we might check that out as well. Have a great day everyone!!

Tuesday, July 14, 2009

Loving Every Bit of This....

I am sitting here at the dinner table watching Mike chase Nick around the house. Nick is laughing and screeching with glee as daddy chases him, grabs him, and hugs him. Nick is blowing off some steam after 6 hours of ABA. He is making much faster progress with the increase in hours. He is also starting to pull a bit of mischief with his therapists. When Ana wanted him to draw on the paper, he took the crayon and slyly chucked it under the table-all the while looking at her and smiling. We have just enough time for dinner, bed, and we do it all over again tomorrow. It has taken a little time to get used to having a house full of people 5 days a week. At first I had no idea of what I was supposed to do while they worked with Nick. I have sat in a couple of times to help and to see how things were going, and talked with each of them when Nick had a "Break". Now I have gotten to like having them here. I talked with all of them yesterday (we had all 3 over at once for a sort of pow-wow) regarding potty training. We discussed adding some more things to work on since he was finishing his other programs pretty quickly now. Today he had a good day. He is working on letter sounds, basic writing skills, requesting what he wants, counting, and ABC's. We are going to add some self help skills such as dressing himself and brushing his teeth. Dinner time is now pretty much stim filled-as he is overloaded from 5-6 hours of working. It is sometimes difficult to hear him lash out while working-but I know it is going to be good for him, and he is only doing it because he is being kept from retreating into his world for the time being. It is so rewarding when I hear him count and speak up for something, or being able to follow directions and making more social eye contact. That is when I know it is working!

Today was also a milestone for Michael. I took him down to get his very own ID card. He also cashed his first check using his new ID card. I am loving every single day of being home with them. A few days ago Michael and I went to see the movie Ice Age 3-D. We also want to see the new Transformers movie. We are planning to go camping next week up near Leavenworth. Should be fun for the boys to get away for a little bit. I am looking forward to it as well.

Sunday, July 12, 2009

Busy Saturday....




I heard through one of Nick's therapists on Friday that there was an autism walk yesterday. She said that they would have a booth there, jump castles, and some free small toys for the kids. Sounded like some fun could be had. I asked Michael if he wanted to go, and he said yes. I was looking forward to getting in some much needed bonding time with both of them.

Everything was going along great. We got up at 7:45 and both boys devoured two waffles each. We got dressed and did all the necessary primping. We were out the door and on our way to get some gas and some snacks/drinks during our walk. I should have known the following would happen. I stopped the car, turned it off, and got out of my seatbelt. Nick quickly did the same, and I had to tell him to stay in the car. This did not go over well. Then Michael told him NO for some reason, and screaming chaos ensued. I told Nick it was ok, and that he could get out when we went to the store. He seemed a bit happier in the store. Feeling good about myself for handling that, I was lulled into a false sense of greatness.

We found our way to the Walk and got everyone and everything out of the car. This was the first year I did not bring a stroller for Nick. I figured he is big enough to walk; and his feet drag on the ground in strollers anyway. Here is what absolutely DID NOT happen, as my *perfect* child is most certainly NOT capable of this.
Nick surely DID NOT have a meltdown of epic proportions upon trying to register. He most certainly DID NOT throw himself to the ground and scream bloody murder. And of course he DID NOT continue his meltdown all the way back to the car. Me being the *perfect* parent that I am, positively DID NOT take him to Fred Meyer in search of any stroller I could find. Upon our quest through the aisles, I DID NOT *bribe* him into calming down by handing him a stretchy,squishy toy for him to twirl. I also DID NOT happen to find the only store I have ever known that had NO strollers. We also DID NOT buy that over-priced emergency stimmy toy before we left. Of course not. After all, those parenting "experts" would agree that is not the thing to do.

By the time we got back to the Walk, people were already walking, so we just joined in at the back. It was a nice walk through all sorts of trails. Nick was having such a great time humming, running, stomping, and singing "Dewy,Dewy,Dock!" the whole way. He loved waving his hands through the bushes as we walked, and at one point nearly became part of the shrubbery as he stomped and pranced his way down the trails. He seems the happiest surrounded by nature.

Thursday, July 09, 2009

Busy Schedule

Here is what Nick's therapy schedule looks like for this month:
Today: Ms Tracy 4pm-7pm
Fridays: Ms Tracy 12pm-2:30pm, Ms Diane 4pm-7pm
Mondays: Ms Stephanie 12pm-3pm, Ms Diane 4pm-7pm
Tuesdays: Ms Stephanie 12pm-3pm, Ms Tracy 4pm-7pm
Wednesdays: Ms Tracy 12pm-2:30pm, Ms Stephanie 3:30pm-6pm
Thursdays: Ms Stephanie 12pm-3pm, Ms Tracy 4pm-7pm

Give or take a few hours; that is around 30 hours per week! Since I have been home; I have been able to see how he has progressed. He is following directions!! His receptive language has skyrocketed. He responds to his name, imitates me, and actually smiled at me when I walked into his room this morning! He can do a lot for himself now-he gets in and out of the car by himself, goes to myself and daddy to say goodbye (before I left we had to physically walk with him to do this; not any more) He is just getting more functional every day. These are the moments that we have struggled to get. He is following directions so easily now, that you can almost forget that this was such a struggle. He may be a few years behind his peers, but hopefully we can narrow the gap as time goes on.

Home Sweet Home!

I am finally sending an update from HOME!! Gotta go now. Have lots to do today before Nick's therapist comes.

Monday, June 22, 2009

Almost home....

The reason for such few updates my blogger friends; is that I have been deployed overseas for the last few months. I have been getting updates regarding Nick and Michael through telephone calls, and, while it is great to talk to them, it is not the same as being there. That being said, Nick and I did talk on the phone for about 20 minutes a few days ago! Most of it was in Nick's own language, but the boy had something to tell his mama! We also spent a long time copying each other's noises. Pure joy. I Love my little guys and cannot wait to get home to them again!! Soon. Very soon my loves.

Friday, June 05, 2009

Shop at Wal-Mart!

While outside with his therapist today, Nick exclaimed "Save money, life is easier, shop at Wal-mart!" He also sang a refrain from a song he heard on the radio, and he has also memorized songs from Guitar Hero. But, Shop at Wal-mart peeps! Nick says so.

Thursday, June 04, 2009

Time For Change!

Thought the old blog could use a face lift!

Friday, May 29, 2009

Babysteps....

I called home a few days ago because I got an e-mail that said "Call me, before I forget what Nick did!" So I called home to find out what was going on. "Nick is going pee on the potty by himself during the day!" Mike said as he was rudely woken up by the phone. "He brought me a diaper and said 'diaper on'". We still have to teach him how to go poo on the potty, and eventually get him to wear underwear; but like everything else with Nick, it takes stages. I have happened on a neat site recently. You can click HERE to take a look at it. She is an autism mom who makes learning items for autistic kids and adults. Some of her stuff looks really neat!! Her button is on the side of my blog.

Wednesday, May 13, 2009

Score one for Daddy!!!

I talked with Mike yesterday after school and we were discussing the aide situation. Check out my awesome hubby: He went down to the school and put up a fight with the administration there. He took Nick's progress report; you know, the one that says he has made no progress? And went to battle to get Nick his aide! It worked! So, now they have to arrange another IEP meeting, and the aide has to come to that-then they will be able to have the aide come in the school with him!! YAY!! It is only for two days a week right now, but it is better than nothing. They are still thinking he will be back at his old school next year, as the class isn't for him. I mean, there are special needs children there, but they are all higher functioning than Nick. It just frustrates me that we were forced to move our kids from a good school to this one-only to have him move back next year.

Now, we also got on the subject of what his teachers say that he cannot do. They say he cannot identify his letters. This astounds us as he HAS identified them in the past in front of one of his teachers, and can identify any letter at home. He can also name colors, and shapes. Now, he has also been at school for three years. I wonder if they ever think that he is getting somewhat bored?? I mean, he was naming letters when he was four years old. He was also counting before three. I have seen him get bored with material before; he gets a look of "OMG REALLY??" and stares out the window. I remember that because I was reading to him a little kiddie book at the time. He just glazed over. I went and got one of Michael's big books of science facts and showed pictures of the solar system. You know that kid turned right around and became interested in all the new pictures and words. Hmmm, maybe Nick likes science...but they don't teach that in pre-school.

I always love to hear about what people don't think Nick knows. He shows us every day that he gets it. Why did Nick look right at me when one of his evaluators was commenting about Mental Retardation?? He honestly looked at me as if to say "I am not MR." Why does he remember tunes that he has not heard for months? How can he remember where exactly he put something earlier in the day, and go right to that spot hours later to retrieve it? Why does he look at me with a mischievious grin and twinkles in his eyes when he knows he is doing something naughty? What is it like for him to be thinking all these things and not able to get them out? How would people treat us when we don't talk for a while? Would they act as if we have no mind or that we are somehow less than human? Seems to me that is how people who cannot talk get treated. It is a huge mistake. One that, thanks to Nick and kids/adults like him, I know that I will not make again.

Friday, May 08, 2009

Stupid School System!!

So we have found home tutors for Nick that our insurance pays for. They were even willing to go to Nick's school to be an aide for him. Wonderful idea, right?? Yes, in a perfect world it would have been just that. We were so close. Nick's teachers were all on board with it, since they recognize that it would help him a great deal. Well, apparently the school board did not agree and has said NO to Nick having an aide. I am BEYOND frustrated right now. I went directly to PISSED OFF. Do not pass go, Do not collect $200. We got his progress report-and once again, no progress was made. According to the piece of paper, Nick can't even identify his letters. Which is BullCrap!! Needless to say, this might have been the last straw. We need to move. We are getting nowhere, and Nick is getting nowhere.

Saturday, May 02, 2009

They were SOOOOO Little!!!

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Hey...You back there?!Photobucket
Michael around 18 mos old

Big Brother




Just wanted to give a HUGE Shout out to my oldest son Michael. It was his TENTH birthday yesterday!! I can't believe my oldest 'baby' is TEN already!! He is not looking like a little 'kid' anymore; he is growing tall and filling out. Where did the time go?? It was also his best friends birthday yesterday!! HAPPY TENTH BIRTHDAY GUYS!!!

I also want to say that Michael is a wonderful big brother to Nick. It's not easy having a special needs brother, but Michael is a champ. He has reminded me many times to tell Nick's teachers that he is just across the hall, and they can come get him if Nick needs him. Of course, I have yet to really do this as I want Michael to have his own life outside of his brother, but he has always put the offer out. It has been that way since the start. I remember Nick was just a day or two old and the nurse came by our hospital room to do a heel prick on him. Of course little man screamed at the stick, Michael turned around and shot the poor nurse a look of death. He was always trying to make Nick comfortable--we have a picture of Nick sleeping in his carseat surrounded by stuffed animals. 5yr old Michael thought he would be more content with lots of soft things. We still have an outfit that Michael picked out for him when he was newborn. It is a lovely white little jumper with a Peter Rabbit design on it. Peter Rabbit was Michael's fave story book character at the time. Nick has stood at the door waiting for Michael to come home from school saying "Michael come here!" When Michael and his friends are playing Guitar Hero, Nick gets out his little guitar and plays in his own way with them. They have shared a room for 5years. No matter how much Michael wanted his own room, two days later we would find them sharing a room again. To see the both of them so attached warms my heart and my spirit. HAPPY BIRTHDAY to a wonderful boy, who I am sure will become a great MAN someday!

Thursday, April 30, 2009

Yoko????

Yes, apparently now Yoko Ono has jumped on the autism bandwagon. Go HERE to read the article published by the BBC. Not sure how I totally feel about this. I mean on one hand it is great that she is supporting the cause, but, Yoko Ono?? Why not someone who is more affiliated with autism?? How about someone who has first hand knowledge?? There was one quote in the article that bugged me.

Once the solution for autism is discovered, we will see the sky shimmering in its original beauty, with no holes.


Well, I see my son in his original beauty WITH autism. He has no "holes". And no, to this date, Nick is not what people call "high functioning", and I still believe he is wonderful.

I know I am not the only person who thinks that once the solution for autism is found, the world will be at an injustice. Kids like Nick are not wanted by the general public. They are not part of that "Perfect family vision". Imagine how many fetuses will be aborted when the parents hear the words "Your baby will be autistic". I admit, autism is no easy thing to deal with sometimes. But what I have found is that a little humor can go a long way. In a way, autism is freeing. I mean, who has not wondered how far an object will fly if it gets hit with the ceiling fan? We know. Socks can fly across the room, so can hats. Shoes, on the other hand, tend to just hit with a "THWACK" and then land about two feet further. I mean really. Us "social people" have not given the world much when you think about it. Possibly because we are too busy yapping our mouths rather than trying to create things. We worry too much what people will think of us if we don't. I dare everyone to, just for one day, do whatever pops into your heads at the moment. Whether it be dancing on your tip toes, jumping up and down in the store, running just to feel the breeze on your face, or gazing at a ceiling fan(and just for some real fun, throw a sock at the ceiling fan!). Get in touch with your inner autistic, and tell me if it's a bad thing.

Tuesday, April 21, 2009

How do You Handle that Awkward Silence....

of when you first tell people you have an autistic child?? You know, you are talking to either a friend or a co worker and it comes up. Or, when talking casually to a first time mom about things like vaccines. There is an awkward silence between conversation when I tell them "My son is autistic". It is the same pause when you tell people someone in your family has died. They don't know how to react. Well, let me tell you. All you have to do is ask the normal questions. You know, all the ones you stop asking when I bring up the "autism" word. He really is wonderful, and I will be the first to tell you so. You don't have to pity us as his parents, or him as the child. Understanding that he is first a 5yr old little boy is paramount. I like to fill that awkward silence with pointing out that he is just a wonderfully, unique little man. I will shout it out to the world if you let me. I will also shout out how wonderful my oldest son is....you know, the one who has to take shots everynight to grow. Don't feel sorry for him either. He does not feel sorry for himself. If anything, he has learned a most valuable lesson very early in life. "We are all the same, even though we are different". Sure, there are days when he does not feel like getting a shot; pleading "can we please skip tonight?? I am tired!" But, more often than not, he is ready when you say so.

So, don't go silent on me when I bring up my kids' diagnosis. To me, that is part of what makes them the unique and wonderful little people they are. They are not defined by it. And you know what? That awkward silence is not going to prevent me from talking about my kids. I am not going to hide them from anyone or the fact that they have some differences. No, life has not gone as I had planned, but I was never really the one in charge of that anyway. If anything, I will shout louder because of the negative thoughts associated with autism. Kind of like saying "Look at this kid. He smiles, he cries, he likes to go places, he likes toys, he likes music and bright colors, just like any other 5yr old! And he has autism." Yeah our days are filled with therapists and evaluations, and other things that most parents don't have to do. But, I would rather be doing this stuff than not have him at all. So, no, I would not trade my life as it is, because that would be saying there is something wrong with my life now.

So, how do YOU handle that awkward silence?? I really want to know.

Monday, April 13, 2009

Happy Easter!

Hope everyone had a nice holiday. For me however, it was just another day. I completed my first writing assignment in my psych. class. A fitting article about Savantism. I was happy to get an A on it! I find out tomorrow what I scored on our first test. I think I did pretty well, but we will see.

The boys seem to be doing well. I talked to them a couple nights ago. The evaluation team came to our house last week and met our sweet Nicholas. They are now trying to match him up with a therapist. Mike and I both said the same qualities: Young, a bubbly personality, and someone who gets in his face. He seems to respond very well to those types of people. The more expressive the person, the more he is apt to pay attention.

He is speaking his mind more and more, which we are absolutely thrilled about. Mike told me they were parking the car in the driveway and Mike said "Seatbelt off" as he turned the car off. Nick responded back with a "shut up". Of course, Michael immediately burst out laughing at the fact that his 5yr old brother had just told off his daddy. He is doing better in school as well. The new program he is in has said that they will send his therapist to school with him twice a week for more one-on-one time. He will also probably be transferred back to Evergreen next year. The school is getting better, but they still are not equipped to handle him full time. He is going to need an aide for kindergarten. No question about it. We are excited though about the progress he has made, and the new services he will now be getting. Other than that, not much else to report.

Have a great day everyone! Thanks for thinking of us!

Saturday, March 28, 2009

The Lord knew what I needed today; he must have. See, right now, I am away from my little guys on a long work related trip, so I cannot see them everyday. I went to work this morning and I happen to have a TV in my office. I turned it on, and went about my daily business. A few minutes later, I hear a very familiar song coming from the TV. The song "Iko Iko". 'It couldn't be' I thought. I turned around in time to see the title "RAINMAN" come on the screen. I nearly jumped for joy, and I also gave an appreciative glance upward towards the sky. Someone knew I needed this. I needed to see a piece of my 'bubby' on TV. I watched the movie through laughter and tears. A few things stood out that I had forgotten about. Like near the end when Tom Cruise is in the room with the lawyer and Dr. trying to get custody of Raymond. The Dr. goes on to describe Raymond in the familiar clinical language that I have come to despise. I cheered when Tom Cruise was yelling "He's so much more than that". My thoughts exactly. I find it very hard to tolerate when Dr's describe Nick as just a bunch of "symptoms" and put all their efforts in reporting the things he CAN'T do, or see everything he does as just a bunch of "Self Stimulatory Behavior" Grrr! Hey, don't NORMAL kids jump on couches too??! Nick is a PERSON. So are all the other Autistics, Little People, Paraplegics, people with Cerebral Palsy, and other differently abled people. Treat them like the human beings they are. Don't treat them as a bunch of "symptoms". Ok, I am getting off the soapbox now.

Anyway, my fave part of the movie came at the end of the custody hearing. When Charlie and Raymond put their forheads together and connect as brothers. I got a little misty eyed thinking about my two boys. No matter what, they are brothers. And a big "HA" to all the doctors who say that autistics are not capable of developing relationships. That is a big misconception. I know it. For a fact. I live it. Nick knows love. He knows he likes to feel loved. When I come home from work, he follows me around. He may not run up and give me a big hug and kiss-that's not his style exactly. But he will follow me into every room and is quite happy enough to be in the same room as I am. I notice him playing in the corners, and do my best to acknowledge him with either a HI Nicholas, a tickle, or rubbing his hair as he stands next to me. That's his way. And it is perfectly fine. He loves his older brother too. He does not like to see Michael upset-and has a unmistakeable look of concern on his face. Don't tell me he is not capable of these things. Everyone wants to be loved and accepted. People just have to pay attention to the subtle cues. If you look, they are there. I promise you.

I got a wonderful e-mail from Nick's teacher today as well! Apparently he is doing excellent in class! She was saying that he is now the 'Calendar helper' and is saying everything she asks him to. She told me that he was eating his applesauce with a spoon with no help!! This is a kid who would not even eat at school in Sept. Much less, sitting with other kids while doing it! Mike has taken him off all of his supplements and even the Rice Milk. So far, he said he has had nothing bad to report. He has told me that he does not want to do the supplements anymore, because he "Likes Nick the way he is right now". Which, is still very much autistic but doing wonderfully. I don't feel like I wasted anything...we had to at least try some stuff, and he did have some real issues. He may well have them again in the future, and we will work with them. But, for right now, he is doing great! I will have great happiness in knowing that.

Monday, March 23, 2009

He's IN!!

Got some wonderful news yesterday!! Nicholas got into the Autism Demonstration Project! He is officially "Done" with the University of Washington as of the 31st of March, and we will now be able to begin therapy at home with him. The autism demo. project is going to evaluate him of course, in April, and they will see how much he will qualify for. But, this now gives us the leeway to hire people to come into our house and do things with him. Plus, it is going to up his hours every month. We also got him enrolled for respite care. Basically, it will be there to give us a break, and we now have someone qualified to watch him if we need it. That way, Mike can go to appointments without having to drag Nick around(i.e. the dentist and other not so friendly places) or he can take Michael to a movie or something. It gives him a little more freedom.

As for me, I have finally gotten off my butt again and registered for school. I am taking a psychology class, and a german class. Slowly inching my way towards my degree.

Thursday, March 12, 2009

Rainman....

That was the movie the guys at work put in this morning. For them, it is simply a movie to watch. They don't give much thought to Dustin Hoffman's character, other than to wonder how can "Rainman" do the complex calculations in seconds. This is the movie character that comes to everyone's mind when you say "Autism". The comparison offends some people in the autism world, because, you see, the Real Rainman; Kim Peek, does not actually have autism. He has what is called Agenesis of the Corpus Collosum Also, very few autistics actually possess the savant skills that are depicted in the movie. I however, do not mind Nick being compared to "Rainman". Why? Honestly, the way that "Rainman" carries himself-with his hands close to his body, head tilted slightly and looking at the sky, his gentle and innocent nature, remind me of Nick. It is exactly the same body posture. I found myself wanting to watch it so that I could soak up a part of Nick. My Nick. My little boy who stood in the middle of a soccer field, looking up to the heavens in smiling glee, completely oblivious to the swarm of a team of 7 yr olds headed right for him. The whole team parted and went on each side of Nick as he just stood there, laughing at the sky. I laugh at Rainman's little oddities, and find myself getting very upset at Cruise's character for being so impatient and harsh with Raymond. Others watch the movie and simply turn it off when it is over. It is finished for them as soon as the closing credits roll. The movie is not finished for us. The credits are not going to roll and then it will all be over. Most people only have an hour and a half watching someone they presume to be autistic. We have a lifetime. The general public does not see what all goes into living with this 24/7. If you'd like to see another autistic character that is more true to life, try watching the movie "What's Eating Gilbert Grape". Gilbert's brother, Arnie; was autistic. Arnie also reminded me of Nick. The echoing language that Arnie does, and some of his mannerisms are like Nick's. I also find myself loving Arnie. The movie "Mozart and the Whale" is another good one. Josh Hartnett's character is obsessed with numbers. Like Nick, he also plants himself in front of the microwave to watch the numbers. But, the general public will associate Nick with the movie "Rainman". They will ask me what his special talent is; and I will say "He can make my heart smile". That's not such a bad thing.

Tuesday, March 03, 2009

My Amazing Nick!

Nick WANTS to talk. How do I know? Because he TOLD daddy...that's how. Nick came up to Mike the other day and said straight out:

"Daddy; Nicholas(he was saying Mike's response), I WANNA TALK!" My little man. Proving to the rest of the world, that he IS aware of things and he does have thoughts about them. Not surprising to us as we have known this for quite some time. But to the rest of the world, just one thing to say. Just because someone cannot talk, it does not mean that they are not intelligent! To quote William Stillman: ALWAYS ASSUME INTELLECT.

Saturday, February 28, 2009

Busy Days....

We have had some busy days here at our house. Last week was mostly a blur. Nick had his usual ABA therapy on Tuesday afternoon, and then that evening we were meeting with a potential home therapist. Nick seemed to like her. He was playing his usual game of chase and being a little bugger. He managed to throw one of our phones in the toilet as well. Still not quite sure if it works or not. Don't fear, we still have another phone. He also managed to pull off one of those decorative type kitchen drawers. You know, the ones that look like drawers, but don't move. Yeah, he pulled it off. Not sure how the heck he did it as it was fairly tough to put back on. One of those things where he does not know his own strength. Anyway, the home therapist will start on Tuesday barring any complications. We also had Nick's IEP meeting on Wednesday. I went in and observed him in his classroom on Tuesday afternoon before we went to ABA. I really got to talk with his teachers and was able to find out how he is doing. The main area of concern was his increase in meltdowns. I suggested that they try and give him stickers or some tape for him to feel with his fingers. He likes the sticky feel to it, and that calms him down a lot at home too-although we rarely have to resort to that because he will go to his room and escape the chaos. But in school, he can't do that-so it led to some pretty decent meltdowns. Just as we were talking about stickers, Nick was starting to get revved up at the door. One of his teachers asked "Nick, do you want a sticker?" He turned right around, regained some composure on his way to the teacher, and said quietly "I want sticker". They were completely shocked! It worked like a charm. I was able to walk him away from the door, and get him to sit at the table with the other kids-with no meltdown. After that, they were completely on board with the sticker thing. His IEP meeting was the next day, and it went fairly well. The school is really trying to suit him and his needs. I asked if he would have an aide for kindergarten next year and they said that would be determined at a later date. We should also find out if he can qualify for year-round school at the end of the school year. That would be wonderful if he does. Other than that, things have calmed down a little this weekend. So far. That could change though!

Monday, February 23, 2009

My Little Man is Growing Up......

Yes, I know it is inevitable and that these things happen; but with Nick every milestone is cause for celebration. This morning, he got on the bus by himself. I walked him as far as the edge of the carport-he did the rest by himself. Last year he was still having trouble going up those big steps; not now. He held onto the rail, and put one foot in front of the other, it took him only seconds to climb all the way up. He glanced back to me only as he was at the top and being escorted to his seat. He gets such a thrill when he does something himself. He gets so proud of himself. The other day he took his own shirt off and both of us were just beaming with pride. In his own time. I just have to remember that. He is making progress. Such good progress that even Mike said that he has so much hope for Nick. Much more than he did before. Of course we always had hope for him; but it was hard to keep that hope when Nick just seemed so disconnected. It was hard when he could not understand simple direction; to know just how much was able to get in. Now we know that everything is getting in. He may not be able to tell us with speaking so much, but his eyes say it all. When he looks at us with that big ole smile, he is saying more than words could describe. It's amazing really. For someone that does not talk can say so much with a simple look. He spent the whole morning drawing on his aquadoodle today. Not just lines, but patterns. He drew big circles, small circles, squiggly lines, and straight lines. We have not erased his latest wall art, because he likes to go around and trace them with his finger. It seems to be soothing to him. Yes, at first I was rather dismayed by his latest doodling. In a funny way it kind of grew on me the longer we left it up. I looked around our bedroom the other night and noticed his art had progressed from just lines, to letters. We have a big fancy "D" on the wall between the closets. Other places we can see M's, I's, and C's. What was even better was that nothing was left un-touched. Nick had colored a line or two on every piece of furniture that was there. He likes to view what he has created. He is actually the only one of my kids who has liked to color with such a vengeance. Mere coloring on paper does not satisfy this need that he has. Wonder if Michaelangelo's mom ever experienced this?!

Sunday, February 22, 2009

Being "Nooooonie"

That was Nick's choice of word to shout out at the soccer field today. We asked each other "What does 'Noonie' mean?" We were perplexed. He would do his happy dance and shout "Noooonie! Nooonie!" We want to understand our little man, and sometimes that means getting down and 'stimmy' with him. Last night before bed we spent about an hour mimicking Nick. I don't know who had more fun....us, or him. Nick laughed hysterically when I would jump and flap and say what he had said. He would then spurt out another 'word' and jump-then I would follow suit. I can imagine how silly we all looked; but we had a great time. Daddy got in on it too, and then the fun really started. Nick and Mike ran around the living room slapping different objects. Each time Mike would say the name of it loud and clear like "TABLE!" and Nick would jump up and down, then run to something else. We have found that Nick DOES like to be social-just that his way is different. When Michael has a friend over, Nick is usually hanging around them in some fashion. He will play in the bedroom beside them-doing his own thing, but still being 'with' them. Today at the end of the soccer game, he was part of the "bridge" that all the parents do. He ran under them (although he stopped midway to just savor the moment with a boisterous belly laugh-and held up the line of kids running through) and enjoyed every bit of it. He does watch what they do, and in his own time, even imitates them. You just have to understand that his ways are just different. He enjoys the same things that most kids do. All he just wants is to be accepted for who and what he is.

Birthday Pics....


Cake #2. The cake that I spent the wee hours decorating!

Behold The Power of the Wand!


Singing Happy Birthday! Nevermind the "stoned" look on his face..LOL.

Wednesday, February 18, 2009

WooHoo!!!

Only four words in this post need to be said: Nick is feeding himself!

Monday, February 16, 2009

Birthday Party Re-cap

Yesterday was Nick's 5th birthday party and I think it was the best yet. He did not eat cake, but that is no big deal. Heck, Michael does not even eat a whole piece of cake that much.

Of course I was running around like a mad person the whole day prior to the party. Could someone please tell me WHY the toilet has to break 10 minutes before our guests arrive?? It all started when I went in the boys' bathroom to clean it, since our guests would be using it. I looked on the counter and noticed a toothbrush was missing. Oh no. I then looked back in the toilet and noticed that someone had left a little "floatie" in there. I yell at Michael "Why can't you remember to flush the toilet?" Michael then replies "I DID! The toilet won't flush!" What do I do? Why I try to flush the toilet. He's right, it won't flush. I spend a few minutes trying to plunge the toilet-for what I don't know. No one can say the last whereabouts of the missing toothbrush, and Nick is laughing like a maniac. I can only assume that the missing toothbrush and the clogged toilet are no coincidence. A few deleted words later, we shut the water off to the boys' toilet, and scramble to clean our toilet in the bedroom. It gets cleaned and Michael and I are off to pick up our guests at the front gate.

Our friend Susan arrives with her two boys. Michael and her oldest son take off playing Guitar Hero in the living room. For a while, all four boys are in the living room. Nick and her youngest son are watching the older two. That leaves Susan and I with time to catch up on life. We talked for a little while and let the kids run around doing whatever,and then it was time for presents. I got Nick to sit on the couch. He was excited at the mere mention of "toys" and followed me around to wherever they might be. Plopped him down on the couch and plopped a present in his lap. I showed him how to do this thing we call "unwrapping" and he caught on in no time. This year he realized that there were colorful and interesting items hidden in boxes covered by the paper-so he was tearing all the paper off. And if you know Nick-he tore every. piece. of. paper off. Every single toy was a smash hit. After getting overstimulated with toys, the sugar high was next. All the kiddos were ushered into our very small dining room and treated to Cake #2(which turned out great. I will post a pic later). Nick even liked the singing part. He seemed to realize that this was all for him. And he liked it! He immediately made a go for the cake. Fingers were digging into frosting, and whole hands were smearing. I tried to get him to taste it, but he did not want to. After three hours it was all over, and we all just lounged around the rest of the evening. It was a wonderful afternoon and Nick LOVES all his toys. Especially his Little Einstein Conductor Wand. He has carried that around all day.

And the toilet still won't flush. But who cares? We will just call to have it fixed this week.