WooHoo!!!

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

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.

Busy Day!!

We have had a busy day today. The boys woke up around 7am, and between 7-8:30 or so we had numerous visits to our bedroom. Nick flashed lights off and on, climbed on our bed, and visited our bathroom. After realizing that sleeping in would be pointless; I got out of bed and started getting on with the day. It was going to be a busy one after all. First on the list was breakfast. Both of them had two waffles and I grabbed a bowl of goldfish crackers. After that, it was time to get everyone dressed to go to Michael's soccer game. It seems to be the one thing that is going right with Michael, so we let him play. This year, Nick is old enough to play on the little teams, but, he isn't. I see all the little boys who are about his age playing now and I find myself getting sad all over again. It comes in waves, and makes itself known at every major milestone that other kids his age are hitting, but we are still stuck in this autism place. As I watched the other little kids play my mind drifted to those "What if?" thoughts. I saw one little boy on the sidelines trailing Mike, and for a moment I wished that was Nick. Life would be so much easier for him, and for us. I am brought back to reality when Mike sits in the passenger seat and says "Seatbelt Off!" to Nick; who promptly unbuckles himself from his carseat. Now, he only unbuckles when told. Last year he had a habit of unbuckling when we were on the highway. Minutes later he has climbed into the passenger seat and has begun playing with all the buttons in the car. He sits back down in the seat and I catch a glimpse of him. Hands are flailing, fingers are flipping, and he is blissfully happy. This is our normal.

After the game, I drop Nick and Mike off at the house. I am taking Michael with me to help pick out all the birthday presents and decorations. This is fun; and this year I could care less what I have to buy for Nick. I found items that would be fun for him and they were even age appropriate! A first! We got him an Aguadoodle Mat-which he absolutely LOVES. Nick has a love of drawing now-so we want to indulge him in it. It makes him giddy with excitement, and so far it is saving our walls. The pen will only mark on the mat. We also bought a Little Einsteins piano, and a conductor wand that lights up and does stuff when he waves it. He also got a pair of toy binoculars, some color wonder finger paints, and a Leap Frog Learn to read thing that hooks up to the TV. (That might help him to learn more words, and it has pictures of the words on the TV...like KITE would show a kite on the TV).

And do you all know that I started this post around 6pm and it is now 10:38pm??!! Why? You might ask? Well, let me tell you what happened. I was baking Nick's cake and all was well until I realized it was too big for my cookie sheet. I then cut it to fit and started to make the icing. The icing came out too sweet, so I started using the store bought stuff. Only to realize that I did not have enough to cover the cake I made, and it was tearing the cake up. Unhappy with the way things were turning out (I can be a bit of a perfectionist) I had to run to the store and buy new cake mix and icing. Came home. Cleared out the old cake and cleaned the dishes so I could start the new cake. New cake is now in the oven. I still have to decorate it and wrap presents. Maybe I will get to sleep in tomorrow?? One can only wish right?

The Results are in.....

And they are just as we expected. Overall Nick scored in the toddler range and is significantly delayed in all areas. If he stays significantly delayed for the next year or two, they will need to rule out mental retardation. Mike and I both feel that Nick is not retarded. But, since he is nonverbal for the most part, they cannot accurately test his IQ. We discussed a lot of topics, but the main one was his school. Now, suddenly Nick is becoming volatile and having tantrums. He is having problems with transitions at school-something he very rarely has issues with at home. Mike was called the other day in fact. Nick was screaming and crying in the background, and his teacher was saying she did not think the bus driver would take him home. Nick LOVES to ride the bus. It is the best part of his day, and to take that away from him just broke our heart. One now has to wonder WHY is he throwing all these tantrums suddenly? And why the hell do they not write this stuff down in his notebook??!! We have received NO communication from this school other than these two times. No thoughts as to what has possibly brought on all these tantrums! All I can say is that since starting at this school; both kids have gone downhill fast. Is it just a coincidence? The Dr has readily agreed to provide Nicks' teachers with info on autism, and will offer them the chance to come to the University and learn from the therapists there. Mike took like 10 business cards to hand out to the teachers and principle of the school. Will they take up the offer? Time will only tell. The school is just not ready for kids like Nick and it is heartbreaking to see him come off the bus with a face red and teary from crying at school. Something is going very wrong; and we will find out next Wed. His future at this school may be short.

Evaluation Day.....

Ok, as I said in the previous post, Nick has been undergoing some evaluations last week and today was the last eval. before the parent conference. They are evaluating him to see where his functioning is and that will determine if he can continue to get services at UW. After seeing so much progress in him this year, I was crushed when he did not "perform" at his best. Simple tasks like matching spoons, identifying car, and imitating just did not happen without my intervention. Nick was bouncing all over the place and could not focus on anything for more than 5 seconds. He does so much better at home, which kind of gives a false sense of progress. It may as well have been his very first evaluation-if you grade it by that then he has not made any significant progress in nearly 3 years. But, I KNOW he has...it is all so frustrating! After an hour of watching him throw blocks, repeat non-sense words, and play with his hands, it was all over and I was heartbroken. We will see what the report says, but I suspect his functioning is still around the toddler level. Days like this are very hard.

Once Bitten......

Ok, I have been really trying to get a "warm fuzzy" about Nick's new school placement since it happened in November. I was thisclose to being there, and then I briefly chatted with one of his teachers today when I picked him up for his eval. at UW.
"Nick has not had a good couple of days" she informed me.
"Oh?" This was news to me; since we bought a small notebook for the teachers to write in everyday(at their request actually) and it has not been seen for weeks.
"He bit the other teacher, and head butted her the other day."
"He BIT her??!!" "What happened??!"
She then proceeded to tell me that each day they require all the kids to sit in a circle on the floor and do "calendar time". I have no idea of what "calendar time" consists of, but apparently Nick was wanting to play with a toy rather than do this. So, his teacher goes and takes the toy from him. Now, in November when he started here, we showed his teacher how to speak to Nick and he will reluctantly hand over what it is you are asking for-minimal protest, and a very controlled Nick. He gets rightfully upset when you just yank it from him. Nick likes order; he likes to feel like everything is under control. Don't we all? Anyway, Nick bit her and headbutted her, and he has been throwing tantrums when transitioning from one thing to the next. He does not do this at home. In fact, he barely does this when out in public. Nick is not a biter. He has never bitten anything other than his own lip before. He must have lost all control of himself in order to do this-which is not a normal thing for him. Now, I am afraid that the teachers will see him differently and act somewhat cold against him. This is not normal for him. He went to Evergreen for two years and he never bit anyone. His teachers all loved him and he thrived. Also, the number of kids in his class has grown from 5 to 9 since November. That is 9 kids-and today there was 4 adults who were also in the class. That is 13 people in a room-all afternoon. It could very well be too much for him. It just seems like they really don't know how to handle him. He is in a room with 12 other people bustling about,expecting things from him, and he goes in to overload. He has no escape. No quiet room he can go to for a few minutes of reprieve. We have an IEP meeting next week and I plan on discussing some of these things. Nick just needs an understanding teacher and he will be ok-I just feel like he will sink at this rate.

On the verge of a breakthrough?

Could it be?? Could it be that Nick is starting to make some real progress in the area of cognitive development? What he did today was a huge leap...no wait....it was a slam dunk!

I came home today and Nick was playing in the front closet with the light on. When he heard me he came out. He was not saying anything, but he was hitting his head with his hand. I thought at first he was frustrated with something, because that is when he usually does this. But, instead of being mad at something, he grabbed my hand and made me hit his head. I can't say HOW, but for some reason I immediately thought of a headache.

I kneeled down to his level and asked "Nick, do you have a headache?" He said nothing, instead he began looking for a place to bang his head. I instantly distracted him by taking his hand and saying, "Ok, let's go get something to fix it."
"Fix it" he understands, and begins to follow me. I find some Children's Motrin and gave him the recommended doseage.

He is still quiet for the next few minutes. Ten minutes or so pass, and Nick is not so quiet anymore. He is screeching with happiness and playing beside me while I clean up the kitchen. Mike notices the drastic change and says "Wow, he must be feeling much better now!" Mike then proceeds to tell me another amazing event that happened today.

He told Nick to pick up all the pillows and put them on the couch. Which, he has normally needed a little help with staying on task and maybe some guidance. Not this day. Nick did it. With no prompts. Words cannot describe how proud I am of my baby boy! My Little Man...Doing the best he can! Today was a good day.

I count this as Imitation....what about you?

This is what transpired as I saw Nick run past me in the kitchen with the dish sponge in hand. Well, he did see me do this ALL DAY with his crayon capers.

Mischievous Nicholas

Oh yes ladies and gents; Nicholas has been very full of himself lately. I have been on crayon patrol most of the day. We keep his crayons very high on the top shelf in the playroom; but that does not deter our little mister. What does he do? Why he pulls up a chair of course and stands on it. His grubby little hands latch on to the oversize crayons, and Nick marks his way down the hallway. Yesterday he managed to open the window in the livingroom and peek his head out. Today he managed to hang one of his bed sheets out the window; last week he had thrown a bucket full of toys into the bush below his bedroom window. Can't say I was all that surprised, given his love of watching things drop. I actually chuckled quite a bit at the image of a blonde haired little boy throwing toys out the window and laughing hysterically as they fell to the bush below. Must have been quite the sight.

How Much is Enough?

I still struggle with this thought. Are we doing enough? Should we fill in his weekend with more hours of therapy, or let him have that time *free*? How much biomed is enough? Should we spike everything he consumes with supplements, do we give him shots of B12 to possibly get some more improvement? What about Nick himself? What would he want? How much improvement do we need to see in him before we can truly say, We are happy? What does Nick think of all this? Does he think that he will never be enough for us? I certainly hope not. I am not trying to start a debate over different therapies-we certainly have seen big gains with doing some biomed, as well as traditional therapies. I know I want the best for Nick. I want him to be the highest functioning that he is capable of, and I am not about to stop any of his programs. But something in me also thinks that he needs to just BE sometimes. He needs time to be his own person-just like we all do. And if being his own person means that he likes to spin toys, and talk non-sense for a little while, why can't that be OK too? He has tons of moments throughout the day where he is looking at us, following directions, following points, imitating, and saying things appropriately. We have spent such a long time trying to make him a part of our world,that we sometimes miss the beauty of his world.One day last week, the tables were reversed.

We were in the boys' bedroom playing around on the floor. Nick came over and kneeled at my side. He then took both of his hands and put them on my cheeks. He proceeded to move my head side-to-side like he does. He was trying to show me something. He wanted me to be a part of his world-he let me in. He enjoyed every second of it-and looked directly at me with a smile from ear-to-ear. For a brief moment, I was in Nick's world.

Word!!

Nick has learned the meaning of the word "No"-and he is using it quite frequently I might add.
"Nick, give me toy"
"No!"
"Nick, give me remote"
"No!"
And the kicker is: Nick is now telling Michael No. He especially does this when Michael tries to take something away. Then it is a 'Noooooo!' sound.

Nick also told our friend "K" to "Give me kisses" when she left.

A Bit of Comfort...

Today is a day to be marked on the calendar; and fortunately it will be because I am sharing it with the blogosphere!

Nicholas sought me out for comfort today for the first time ever. Usually what happens is Nick starts crying somwewhere in the house, and it is up to us to hunt him down and console him. It has been this way since he was born. He never came to us when he was hurt or upset.

Tonight, my baby boy needed reassurance and he came to me for it. Something so simple; but yet a monumental breakthrough. I was in the kitchen and Nick was in the living room. Something did not go his way, and he got upset. The sliding door to the kitchen opened, and my little man walked through and put his head on my shoulder, still crying. I enveloped him in my arms and talked softly to him. A few minutes of cuddles later, he was satisfied and back on his way. Tonight, we moved another mountain in this struggle.

Hakuna Matata!!

We have had quite an eventful week. Our friend "K" is in town visiting and taking care of some last minute things before moving to Texas. I took Michael with me to pick her up from the airport on Tuesday evening. The boys took to her immediately. We brought her back to the house and got her settled in Nick's little work room for the time being. Nick and Michael have loved having an extra person around to play with. She is so good with the boys. We hated to have her leave us, but people tend to move on with their lives as they need to. The boys have accompanied Mike her hither and yon as she runs errands. Yesterday they had to take her car to the dealership for some minor repairs, and as they were talking to the service guy, Nick managed to get behind the counter and turn off all the lights. Everyone else had a look of confusion on their face, Mike and "K" realized in a few seconds and shouted "Nick!". We get those looks quite often-and it is the same result, we know who the culprit is. He can be "very,very sneaky!!"

I had to get them new toothbrushes,because throwing them in the toilet is a sure fire way to get new ones....or rather, Nick throwing them in the toilet. Along with the new toothbrushes, I also bought locks for our toilets and installed them immediately. No worries. I got two of them that sing a tune as you brush. Nick's sings "Hakuna Matata" from "The Lion King". At first he was not sure what to make of this, but now he loves it and laughs the entire time he is brushing!!

"K" brought the boys a big bag of souvenirs from Thailand, and Nick has taken to one of the T-shirts she brought. He was carrying it around most of the morning on Wed. Mike asked him if he wanted the shirt on. Nick said "Shirt on." Well, when Mike put the shirt on him, he realized he could not carry it around anymore and then exclaimed "Nooooo! Shirt OFF!" Poor K was also getting barraged with Nick wanting her to "FIX IT" when one of his toys was not lighting up. The poor girl was clueless as Nick shoved his rhino flashlight at her; until it was explained that all she had to do was turn it on and he would be happy. Nick has surprised us with taking this change rather well. We had to take the top bunk down in order for her to have a bed to sleep in, and he has adjusted with little problems. Change has always been easier for him when he is at his own house. There are a lot of "knowns" around here...and it is the "unknowns" in the rest of the world that are unsettling to him. It was an experience schlepping this kid across the country and staying at a different hotel every night ;)

The List..

My list of things to do today somehow keeps growing. Just as it does on most weekends.
Our morning routine on the weekends goes something like this: I wake up(sometime after the boys do of course) and sneak into the shower while no one appears to be "needy" of anything. I get dressed and venture out into the abiss of the livingroom; which by now has all the pillows on the floor, maybe some clothing,and of course toys. I give Nick a sippy cup and that will usually last him until I get the dishes done and make breakfast.
Breakfast is two waffles with syrup. If we are out of waffles, then our day is already off to a bad start. Nick loves waffles. Pancakes are a suitable substitute, but anything else is met with uncertainty and whininess. I also fix breakfast for Michael. Sometimes he wants waffles too, sometimes cereal, sometimes just bacon will do.
Then we hang around the house for a couple of hours. I am trying to catch up on laundry-so the washer is usually running all weekend. Depending on the weather, I take one of the boys on any errands I might have just to spend a little time with each of them.
Today I need to do a few things. More laundry. Go to the grocery store. Go to Safeway-they have bigger containers of Rice Milk, and lunch size containers. Clean our bedroom, clean the toilets, and straighten up the house a little. I might take little Mr Sunshine with me, he likes to go places and seems to have fun no matter how mundane the task is.

The dreaded Cold.....

UGH! I hate it when Nick gets a cold. Not just because my baby is sick, but because he gets snot ALL over him....literally. He wakes up with it all crusted to his face,hands,shirt,hair,etc. It is quite literally "here,there,and everywhere!" Then comes the sneezing. Rocket propelled goop goes all over-it is really quite an experience. Not so much a pleasant one either. Here's to snotless days very soon.

Headbanger's Ball.....

We have a new hole in our wall courtesy of Nick. Saturday morning we saw a part of Nick that we thought had passed. Headbanging. Nothing seemed to go right for him on Saturday morning, and he spent much of the morning being crabby and pissed about things. I can only take so much crabbiness before I bust, and after about two hours of crying/whining/general unhappiness; I sent him to his room. He spent a little time in there "cooling off", while I relished a few minutes without any screaming of any sort. After our manic morning, we had quite a lovely afternoon. I took my little bud to Wal-Mart, and the outing seemed to be just what he wanted. That boy loves to go bye-bye. You say the words and he is standing at the door like a racehorse waiting at the gate. When you open it you had best better be ready to run after him!

As we walked from the parking lot, I looked down to see Nick in true bliss. It was raining out,but that did not matter to him. He was looking up into the heavens, smile from ear to ear, letting the rain fall on his face. I must admit, part of me was jealous-he was enjoying that with every fiber of his being-something most of us are not privvy to because it would be deemed we were "strange".

Sunday was a better day for us. Although Nick did bang his head once. We can kind of track how much he has grown by the height of all the dents in our walls. The previous dents are about 4-5 inches lower than the current ones. =)

Monday we finally got the package we had been waiting for. I got two bottles of the KidsChelate from www.evenbetternow.com and gave him a dose in his juice cup. I crossed my fingers that he would drink the juice, and he did! I was so happy! We have tried some supplements this way only to have him throw the cup to the floor after one sip. The only thing I have noticed so far is an increase in farting. Not sure what that is about yet. LOL!

Patience.......

I am sorry to say that this is not something I have had a whole lot of the past couple days. It does not help me any that it has been raining constantly for what seems like forever. Nick has been trying some new foods; which is a good thing. BUT, he is not really into swallowing them. So, what does he do you might ask?? He hoardes it in his mouth. It makes what should be a 15 minute meal into a 45 minute long ordeal. [[sigh]] Then, once he is out of his chair, I still have to watch him because I have caught him dumping the contents of his mouth onto the livingroom floor. [[Grrrrr!]]

His OT was supposed to start today; but was cancelled due to the therapist having to teach a class or go to a class or something like that. I was too annoyed to really pay attention.

Right now I am trying to hold my sanity together and make it to their bedtime. Which, from the looks of it, will be promptly at 8pm!

Nick's Favorite Toy

Who knew a play microwave would be such a BIG HIT?? This is the Cadillac of play microwaves though. Not only does it have working buttons, but a timer, a table that turns inside, and lights that come on just like the real thing! It even beeps when the "food" is done! Needless to say, lots of items around the house get "nuked" in this contraption-the phone,pens,my hat, socks, and whatever else Nick can jam in there. We have already had to replace batteries four times since Christmas. But, who could not love this face??

By the way, the REAL microwave is JUST as fascinating to him!

Diaper Dilemma...

I came across a bit of a dilemma today at the grocery store. Earlier last week I had gone to Safeway(not our usual store)and bought a big pack of Huggies Overnights. These are wonderful diapers for Nick as they hold up overnight, and it was truly nice to have a week where I did not have to change sheets. Anyway, I went to our usual store today to stock up on some items since school is starting again tomorrow(maybe....as I left the house this afternoon it started snowing and has not stopped). One of the items we needed was diapers. I looked for the big pack of Huggies...none to be found. They had the Overnights, but only 27 in a pack. UGH. If we use those all the time we would be buying more in just 2-3 days(some get sent to school). But, if I buy our usual big pack of Luvs and use those at night, we are back to changing sheets at least twice a week. I do not like doing more laundry than I have to. I finally decided to get both. Yes, it was expensive, but it is either a few extra dollars, or an extra load of laundry?? Hmmmm. Hopefully this year we can get Nick potty trained! Maybe I will start doing my shopping in both stores??

New Year...New Things A Happenin'

Nick starts his Occupational Therapy on the 7th-we have been waiting for this for 11 months!! I still cannot believe it took that long! Yesterday I ordered some chelation drops for children and a hair test to determine if he has heavy metals in his system. We have such a difference in him after the clay baths, that we wanted to see if it will get even better after he gets the drops. He is still very much autistic, but I have read that heavy metals can also affect digestion-and Nick has lots of issues there. I am still waiting a response from his doctor about the comprehensive digestion stool analysis-maybe looking further into his digestive system will lead us to more clues about him. As for Nick, well, he is still just our Nick.. :) People still think he is adorable when he goes up to them and plays "hide and seek" from mommy or daddy in the stores.

Wednesday night we did not do much. I went over to the neighbor's for a while and chatted with them-Mike stayed home with the boys. I came back home and spent the last few minutes of 2008 with them. Nick went to bed at his normal time-no sense in having a super cranky 4yr old the next day with everyone else who was tired.

Thursday I went to Safeway and bought more rice milk for Nick since we had run out. I also found some gluten free/lactose free Pedia Sure. Nick loves the regular stuff, and I had not noticed if it was gluten free/lactose free before, so I bought it. He had some of the regular stuff last week, and he also had some pretty narly diarrhea a couple of times-so maybe that was the cause. If so, then I know the poor kid really cannot handle milk. Lactose intolerant maybe??

Friday we took down all our Christmas stuff! I was ready to see it go. Now things are back to normal, and we can get on with 2009. We went and bought some storage cabinets for all the gaming crap that we have(i.e. controllers, games, and the other crap that seems to accumulate with that stuff). We also bought a dresser for Nick! It's only been almost FIVE YEARS since he graced us with his presence-I guess he is here to stay..LOL! Nick was having fun walking beside the cart. I rarely ever let him do this when I am out alone with him; he likes to run and it makes things very difficult. It is almost to the point where he will need one of those leash thingies-he is just getting too tall for the baskets. It is hard to get him in and out of them because his legs are so long. But, when we are all out together, we usually let him walk. After we got all the stuff, we headed to Quizno's for dinner. They are familiar with us there and know Nick. He was enjoying every minute of this and was "silly-talking" the whole time. There really is no other way to describe it-it is Nick's own made up jargon that he does when he is happy. He had two pieces of the Quizno's tape and was in heaven. It felt like we were a normal family. We were eating in peace, and Michael was astonishing us by eating all the hot peppers he could tolerate! We all had a great time!