Sunday, December 23, 2007

Christmas Vacation

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

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

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

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

Christmas Slideshow

Friday, December 07, 2007

Fantasy Lights



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

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










Saturday, November 24, 2007

Thanksgiving update

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

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

Saturday, November 17, 2007

Progress Report is in....

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

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

Here is his progress report from the school:

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

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

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

Sunday, November 11, 2007

New Slide Show

Nick's World

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

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

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

Thursday, November 08, 2007

Good News!!

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

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



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

Sunday, November 04, 2007

My Little Ducky



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

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

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

Sunday, October 21, 2007

GF/CF



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

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

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

Sunday, October 14, 2007

Pictures from our walk for Autism

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

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


Nick loved the "Bubble Man"


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




Our next car!! (Stop laughing!!)

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

Friday, October 12, 2007

Another doctor visit

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

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

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

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

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

Sunday, October 07, 2007

Peaks and valleys....

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

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

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

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

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

Nick-11 mos old; eating a biscuit


Look at that! My baby eating crackers and cheerios!

Saturday, September 29, 2007

SSI Update...and trying something new!



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

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

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

WALK NOW

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

Tuesday, September 25, 2007

Two sides of Nicholas

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

Friday, September 21, 2007

SSI


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

Tuesday, September 11, 2007

S.W.I.M.

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

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

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

Sunday, September 09, 2007

In Memory of Sept 11th

In Memory September 11

Organization is key...



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

Tuesday, September 04, 2007

We are Home....

We had a wonderful time visiting with our close friends in Spokane! We left our house around 2pm on Friday afternoon, and arrived in Spokane around 7pm that night. Michael and his friend N started playing right away! It was like they had never been apart. We talked for a little while and then went out to eat at Taco Bell. We basically took over the joint with the eight of us. We checked in to our hotel around 11pm and got settled. I had hoped to put a little distance between me, and our world of autism. I was trying to put it in the very back of my mind for just a few days. Well, it looked good for us on the first night there; except for some minor crying at the hotel that night upon check-in.

Saturday was completely different. It started off in the morning when I had to shower in the dark. Why you ask?? Because when I turned on the bathroom light it also turned the fan on. Nick screamed like no tomorrow. He was completely out of sorts for most of the day. One day maybe we will realize that one of the hallmark symptoms of autism is the need for routine??!! It took Nick a little while to get into the swing of things, and in the meantime he was Mr Grouchy. Nick totally loved playing peek-a-boo with their daughter. It was simply the cutest and sweetest thing. I told her she could babysit Nick any time. Saturday evening we all took the kids out for ice-cream at Maggie-Moo's. We all had some absolute splendor! I suggest Cake Batter with Cookie Dough :) Michael had a huge chocolate shake with whipped cream, and Mike had some Butter Pecan with Cotton Candy. After everyone was high on sugar; we went to the skating rink to let the kids skate. Michael had an absolute wonderful time!! Nick had a great time playing with the steering wheels on the video games-it was fine until he started getting a bit irritated with the noise. Thankfully, by that time the kids had skated enough and we turned in for the night.

Sunday was just a day of hanging out. Michael had spent the night Sat. and we celebrated their little girl's 10th birthday. We watched "Blades of Glory"(funny movie I might add!) and had some pizza and cake. We were very sad to leave on Monday. We had such a great time. (You're not getting rid of us yet guys!!Next year!)

This week the agenda is Back to School! I met Michael's teacher today. His new classroom is right across the hall from his old one. He starts 3rd grade tomorrow at 8am sharp! Wish Daddy luck :)

Friday, August 31, 2007

Have a Great Weekend!

We are spending the weekend with our friends in Spokane. We plan to leave this afternoon, and we already have reservations at a hotel. Some much needed time away. Hope everyone has a great weekend! See you next week...

Friday, August 24, 2007

Ups and Downs....



It has been a while since my last update! Do not fear, we are all doing just fine; just very busy! Summer is coming to a close, and I have two growing boys who outgrew their clothes!! Last weekend I decided to plunge head first in their wardrobes and get rid of stuff that was too small. I admit to getting a little teary eyed as I dug through Nick's dresser. He is my "baby" and it was hard throwing out some of those cute little short sets. Who said he could grow??? I filled up two garbage bags and headed down to the recycle center to drop them off.

After that, Michael was in desperate need of some new clothes for school. Otherwise he might just start the first day in undies! I packed Nick up and we went shopping. Sunday we made another trip to Wal-Mart and then the Commissary. For the first time, Nick did not tolerate the commissary. There were a lot more people than usual, the PA system kept going off, and the noise level was more than he could bear. He was covering his ears and screaming by the third aisle. I decided to abort my trip and take him home. I left my cart, and carried him out of the store. I went back after dropping him off with daddy; but I did miss my little Bubby.

Michael started soccer on Monday. Our practices are on Mondays and Wednesdays at 4:30pm. He is doing pretty good. He is not too much shorter than the other kids now. Nick of course was happy to just run in circles and feel the grass. A couple of kids around his age tried to get his attention, but he just clicked his tongue and walked off leaving them rather confused. They don't know what to make of him yet. I get a little sad for a few minutes, but it tends to pass quicker now than it used to. We are proud of all he has accomplished so far, and for things he will accomplish in the future. He is such a gentle soul, and an absolutely delightful little boy.

Last night as I was putting the boys to bed, Nick grabbed Michaels hand and put it on his belly. He then looked right at Michael and said "Tickle" with a smile on his face. Today, we went to our Wing Picnic and the boys had fun watching the Soap Box Derby. We are all pretty tired, so I will end this update for now. We are all enjoying the last few days of summer with them before school starts again!

Tuesday, August 14, 2007

A Very Stimmy Two Days.....

UGH! This is sometimes the worst part of dealing with Nick. Dealing with his stims. The past two days have really frazzled my brain. The constant sounds of the remotes being twirled against the walls, clicking his tongue endlessly, constantly wanting to turn the light on the ceiling fan on/off/and on again, twirling toys, spinning them on the coffee table, twirling his hands in front of his face, toe-walking, lining things up vertically. I think I said all the things he has been doing in earnest the past two days. I know why he has been this way. Michael has had soccer camp the past two days and Nick has been around more people than I am sure he cares to. It is a disruption in his schedule, and we pay the price with his constant stimming. Yesterday was awful. He was trying to stand up part of the portable A/C vertically on the bunk bed. It was not working right and he was screaming. I went into the room thinking something surely awful had happened to him(that's how loud his screaming was) only to find him getting irate and waving the part around(the long piece that goes in the window-hard plastic) and I immediately knew where this was going! Sure enough, he had that wild look in his eyes(the I'M OUT OF CONTROL look) and before I knew it, that object was ejected into the air-and landed right on my foot! Holy SH*T that hurt!! I managed to keep my composure and for that I am thankful. I grabbed it, and put it up someplace very high where little man cannot reach. Needless to say, the top of my foot has a decent size bruise. Today has been physically less painful,but mentally exhausting as I keep removing things from the house(the baby gate is outside-one day of standing it up and knocking it down 500 times will do that!)or Nick's reach.

Sunday we went out to eat at a place called Shari's. Nick was having a good day and was happily munching on some french fries. I was amazed he was eating these because they were bigger fries and they had the skins still on. He was quite verbal, and happily jumping on the seat. We were happy to have this smidgeon of time where Nick is doing what every other kid his age does. So maybe we were not totally ready to tell him to "Stop it!". Well, the man in the booth next to ours was seemingly annoyed with Nick's jumping and peering over the makeshift wall. He stood up and said to us "Can you PLEASE make him STOP that until after I eat??!" My mouth said "Yes Sir. We will try." But my head was screaming "Are you kidding me??!! This is the most NORMAL thing he has done ALL DAY...I am not ready for him to STOP. You have no idea what it takes for him to do things like this!!" Regular people will just never understand. We need places just for autie kids and their parents. A place where they won't be judged or told to "STOP IT!"

Monday, August 06, 2007

What's This?



We have been working on this for about 2 weeks now. We showed him the flashcard, got him to point, asked "What's This?" hundreds of times...and he echoed hundreds of times. Not today. I got the card out, Nick sat in the chair, pointed, and asked "What's this?" all by himself! He finished the deck of flash cards, and we started a second time with the video camera ON! What you see here is the result...If he can ask a question, he can learn anything.

Sunday, August 05, 2007

The Window....


The object of Nicks' fascination....in which everything must be vertical....

Tuesday, July 31, 2007

Progress at last!


Nick has made great strides ahead this week! He is now matching pictures with great accuracy-and he has only been doing this for a few days!! We also work with him on labeling. We have started with animals, and that seems to be going well. Mike is getting in on our little sessions as he was amazed with Nick's voice actually speaking! We play the "What's This?" game. I hold up a card with an animal on it and ask "What's this?" Nick points to the card and echoes the question. I then say the name of the animal and he will then say it. Today we threw in a flip-book with different pictures in it-and went through the whole book with him.

Today he also ate a WHOLE jar of Del Monte Stage 3 Chicken soup dinner!!! He actually CHEWED the little bits of noodles and veggies! I was amazed!!

Last night Mike went to go check on the boys before heading to bed. He went into the room and saw that Nick was not in his bed. He found him sitting on Michael's bed looking out the window. Mike asked him "Nick; what are you doing?" Nick looked right at him and softly said "window" and then looked back. Mike was so stunned that he came and immediately told me the story. It was like we had won the lottery. Tears of pride welled up for my little guy. Today, Mike asked Nick if he wanted to be lifted up--and Nick responded with a simple "No". We have never been so overjoyed to hear "No" in our lives =) We are loving every minute of this!

Thursday, July 26, 2007

This is NOT how I pictured my Life.....


As I sat at the table last night eating dinner, I was able to steal a few minutes to reflect on our lives in the last 10 years. I have to say "Our" lives because I am sure this is not what Mike pictured either.

When I dreamed of what my family would be like when I was little, I always dreamed of two happy, playful, energetic boys. They would be tall, dark haired, brown eyes, would do perfect in school, and life would just be wonderful. Apparently, I left too much to be determined by the man upstairs.

When Michael was born, part of my dream had come true. There he was, all pink and full of baby chubbyness, all ten fingers, ten toes, what more could we want? After only one year, Michael had gone from being in the 50% tiles, to being in the 5th for growth. We spent the next 5 years going to a endocrineologist, having bone scans, taking measurements, trying to figure out what was going on. In between visits was a nightmare of trying to get him to eat and put on weight. People would ask "Why is he so small?" and all we could do was just shrug our shoulders. After 5 years, we finally had an answer. Growth Hormone Deficiency. He was put on treatment, and we were relieved that it was something "fixable". Our lives were back on track.

By this time Nick had been born, and he was growing just fine. He was 50-60% since the day he was born, and has not looked back. From day one he was completely different from Michael. Compared to Michael, Nick just seemed like a blob. By one year, I had a little voice in the back of my head that something just did not seem "right". Nick was lagging behind it seemed. He liked to spin wheels, but then again babies will all find stuff like that. He entered daycare at around 14mos and things just got worse. He walked late, was not responding to his name despite his hearing being normal, ate nothing but bread and applesauce, refused to sit with the other kids at meal times, and was often playing by himself in a corner somewhere. At two years old, he was diagnosed with autism. Another detour. This one is a big one. Daily life can be a struggle. Finding services for him has been an even bigger struggle. His behaviors can be devastating. He has put two holes in our walls from head banging, and many more dents.


He needs intensive speech, occupational, physical, and behavior therapies just to get him to a functional level. We don't care about college, we just want FUNCTIONAL. His senses overload him, he cannot break through his wall to talk, he struggles with texture issues, all the things that we take for granted are such hard work for him. Yet, the sweet moments are extra rewarding. When he says "Cow" while looking at a bird, or gets gutsy enough to climb UP a slide, do I say anything? Hell NO! It takes so much for him to do these things, and he is so proud of himself when he does them. All of this, and yet I would not trade it for anything. Maybe the man upstairs knew what he was doing afterall.

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Sunday, July 22, 2007

Mommy and Me time!


Monday was a nice day outside, so I took the boys to the zoo for some fun. Michael had a great time, and as far as I could tell, Nick seemed to like it as well. He was not too interested in the animals, but he seemed to really like the fish in the aquarium. Some areas just were not his faves though. The whale show was difficult for him. With all the people crowded around us he started to lose it. Michael got to see the show, but Nick was happier strapped in his stroller in back of the crowds. We had a couple of meltdowns-but they were easily controlled, so it turned out pretty nice.

I applied for SSI for Nick. We find out Aug 3 if we will get it. This would mean extra money for his therapies, or other supplies he needs. I also got the referral from our insurance to cover $2500 month for ABA therapy, as well as going to the University of Wa. He is still on the list for Speech and Oral motor therapies.

Friday we had our first appt. at U.W. It was basically a "get-to-know-you" session. She asked me a lot of questions regarding Nick, and then proceeded to work with him a little bit. He did pretty good with matching objects, and puzzles. As well as asking for more crackers. She told me to write down every time he bangs his head or hits himself so that we can figure out what is causing him to do that, and we can teach him a more appropriate behavior. Since Friday, we have already used up one sheet of paper that she gave us. We still have 5 more days to go!

Today, I worked with Nick a bit on labeling animals. We used flash cards that had what the animal felt like on them. I held up the card and asked "what is this?" and then moved his hand over the patch of fur, or material, and said the name of the animal on the card. He then repeated the name after I said it, and he was rewarded with playing with a toy for a minute. We repeated this drill twice-and went through all the flash cards. I am now searching to find him a therapist this next week of my vacation. I would do it in a heart-beat if I did not have to work. I know Mike would do it if he had to, but he is not the kind of person to just sit at a table or in a room for the day. He would much rather have Nick out and about in the real-world...which is good too. He would do it if we can't find someone, but I think it would just be easier to have someone else here.

Saturday, July 14, 2007

A Day at the Mall

Seeing is Believing!! Here is the PROOF that Nick is back to eating french fries!!


And yes, I was the overzealous mom taking pictures of her kids eating french fries. You would too if every piece of table food was a struggle for your little guy. I am so proud of Nick for this seemingly small victory. We would serve up french fries everyday if it would not harden our arteries!

Today we again went to the play area in the mall. Nick learned to climb through the little tunnel, and ALMOST went down the little slide by himself. The steps are a little small and steep, so he ended up backing down at the last minute. Michael was right behind him to make sure he did not fall-what a lovely big brother. We did have a couple of instances where Nick hit another kid-and I was quick to tell him NO! and we went up to the little boy and apologized. I showed Nick that we be "nice" to other kids by taking his hand and patting the boy GENTLY on the arm. After a few minutes of letting Nick play on the seat with me, I took him over to one of the other climbing things(it was a little pig) and he practiced climbing on that for a little bit.

Monday we have a trip to the zoo planned, and the rest of the week will be devoted to checking into SSI, and scouting around for a private therapist. Thursday we have our first appt. with UW. Wish us luck!!

Tuesday, July 10, 2007

Silly Talk...Silly Dance....Silly BOY!



Nick engages in these things almost on a daily basis; and you know what?? I LOVE it! Sure Nick says non-sense words that nobody understands; but when he is saying them he is usually HAPPY! Yesterday Nick and Michael went on a banter of "eeeeellloww" back and forth. Nick has quite a few words that we just don't understand. He says them clearly(and loudly I might add). Some of them are: "Aya", "Dee-nee-nee","eeellow", and a humming sound. The humming is almost like he is imitating a machine of some sort. It is very precise, and is usually accompanied by some sort of action from Nick; i.e. moving his arm up and down. We have been trying to think of what this might be, and the only thing we could think of is the sound of the garbage truck that comes every week.

Even though they are more than likely just some vocal stimming that kids with ASD will do, it is still a way to connect with him and it can be fun at times to hear his little diddies throughout the house.

Sunday, July 08, 2007

One Small Step at a Time



We are doing our own form of Physical Therapy here at home now. Since Nick is out of school, he does not get that stimulation he needs for his muscles to get stronger. So, now, I have it written down on our calendar(which is like our Bible) that every weekend we will go to the park, and I also want him to get used to being around a group of kids; so we also are taking him to the Tacoma Mall play area. I was kind of skeptical of the play area at first because the last time we were there all he wanted to do was run away! But, I thought it was worth a shot. I am so glad we went! He loved it! He liked the little slide they had and the play house they put up. The play area was completely redone since the last time we went, so it was a totally new experience. Nick loved all the different shoes as well--he went up to one lady, bent down, and touched her shiny black shoes. Then he saw some sandals that caught his eye-so he picked one up and started to twirl it. I calmly went over to him and re-directed him to the slide. He enjoyed his time in the play area. Michael helped him out too by showing him how to slide and how to go under the tunnel.

After about an hour or so, we left and had lunch in the food court. I put one french fry on Nick's stroller, and then watched as he slowly inspected every inch of it. He touched it, twirled it, smelled it, put it to his lips, and licked it. After a few minutes, the UNTHINKABLE happened.....HE ATE IT!!! He has not eaten a french fry in about 6 mos, and you would have thought I won the lottery with how much praise I gave him!! He not only ate that fry, but he finished off the rest of them as well--even the ones that had corners and dark spots!! My amazing little guy--he tries so hard! Things don't come easy for him, and the sounds from all the people were sometimes too much as he covered his ears quite a bit, but he managed to overcome it and eat french fries with us!! I am over the moon!

Saturday, July 07, 2007

What a way to raise awareness!!!

Check out this amazing skate team's website and blog!! They are Rolling for Autism They are SKATING up the East Coast to help raise money and awareness about autism!! Way to go!!

WALK NOW

I have already registered for the Cure Autism Now walk in Seattle. We have until October for the fundraising, and we have our goal set at $500. Visit Nick's Site to donate to this wonderful cause!! Help kids like Nicholas get the treatment they need and to possibly find a cure for autism!

Thursday, July 05, 2007

Firework Fun!



Our fourth of July was great! We spent the day outside, and my original plan was to get the boys ready and take them out to the Freedom Festival to have a little fun. Somewhere between getting a shower, doing a little housework, and talking with the neighbors things went a little awry. Michael and T were having a great time playing outside in the sprinklers, and we were all out in the carport talking, and watching the kids play. Their plans were to go to the festival, have a little bar-b-que there and possibly meet up with us and watch fireworks. Our plans were very similiar. Then, our hubbys started washing the cars. Mike started on my car first, then E got the idea to wash their truck. I was going to give Nick a bath and then head out. Then, E slipped while washing his truck and cut his eye pretty bad. It was bleeding rather profusely, so we offered to watch T (their oldest) while they took their younger son with them to the ER. E got all stitched up and was back home in a little over 2 hours. We all ended up grilling out with our grill and it turned out to be a good evening. Nick was not too keen on all the people coming in and out of the house-so he hid in his bedroom until they all left.

All 8 of us watched the fireworks display at Ft Lewis, and Nick had a wonderful time. He kept wanting to get closer to the action, so maybe next year we will watch them from the stadium. All in all; we had a great holiday. Here are some photos:


Nick waiting patiently for the show to start...


Mesmerized by all the lights in the sky...


Michael...enjoying the warmer weather!

Sunday, July 01, 2007

Autism 101

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

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

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

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

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

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

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

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

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

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

Saturday, June 23, 2007

University of Washington

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

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

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

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

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

Tuesday, June 19, 2007

An old battle revisited.....

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

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

Saturday, June 16, 2007

Under the weather....

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

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

Monday, June 11, 2007

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

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

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


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

Saturday, June 09, 2007

Feeding Therapy

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

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

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

Sunday, June 03, 2007

Busy Weekend!!

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

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

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

Tuesday, May 29, 2007

Update

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

Monday, May 28, 2007

Another day....another hole in the wall


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

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

Meltdown Mode


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

Instructions Included


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

Sunday, May 20, 2007

I Survived!!!!

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

Sunday, May 13, 2007

Ups and Downs

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

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

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

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

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

Friday, May 11, 2007

They are fixing our house!!!

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

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

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