Nick TV

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Frustrated....very frustrated....

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

HAPPY EASTER!!

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

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

Autism video

Does This Look Like "suffering"?

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

Weger Look-alike Meter

MyHeritage: Look-alike Meter - Geneology - Pedigree

Weger Look-alike Meter

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Party Time!!

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

The cake

The party room

Not too sure about this whole singing thing...

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

Hey, this cake stuff actually tastes pretty good!

I think I like this Birthday Thing!

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

A Party for Nicholas

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

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

OT Appt and other stuff

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

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

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

A Breakthrough week!!

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



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

Time for an update!!

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

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

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


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

Happy New Year!

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

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

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

We have a lot of work to do!

Christmas Vacation

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

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

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

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

Christmas Slideshow

Fantasy Lights

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

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

Thanksgiving update

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

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

Progress Report is in....

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

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

Here is his progress report from the school:

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

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

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

New Slide Show

Nick's World

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

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

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

Good News!!

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

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



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

My Little Ducky

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

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

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

GF/CF

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

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

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

Pictures from our walk for Autism

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

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


Nick loved the "Bubble Man"


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




Our next car!! (Stop laughing!!)

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

Another doctor visit

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

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

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

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

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

Peaks and valleys....

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

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

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

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

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

Nick-11 mos old; eating a biscuit


Look at that! My baby eating crackers and cheerios!

SSI Update...and trying something new!

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

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

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

WALK NOW

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

Two sides of Nicholas

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

SSI

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

S.W.I.M.

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

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

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

In Memory of Sept 11th

Organization is key...

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

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 :)

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...

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!

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!"

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.

The Window....

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

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!

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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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.