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.

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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?!