It is Official.....

Nick has Autism. I went to his developmental pediatrician's office today for the "official" report. I got a copy of it and will post it later as it is pretty lengthy. I won't post the whole thing, but excerpts of it. Nick was diagnosed with moderate autism with a global delay. Dr. Flake(yes, that is his real name) commented that normally they do not diagnose kids so young with autism(more or less PDD-NOS or the like), but Nick was more than 2 Standard Deviations below average on just about everything. Dr. Flake recommended Nick get private Speech and Occupational Therapy 2x a week, along with all the other therapies he recieves at the Birth to three center. He wants to load him up with alot of therapies now and then see where we are at in 6 mos. After Nick turns three, he will be part of the school system. Then he will go to a developmental pre-school 5 days a week.
We have a busy week ahead of us. Michael starts soccer camp on Monday, and swimming lessons on Tuesdays and Thursdays. Plus, Nick has therapy everyday, and we are hosting one of Michael's soccer coaches from the U.K. during the week of camp. I will try to get as many pics as I can of the boys doing their "things" and post them next week.

Finally some EXCITING news!!!

That is TOTALLY UN-related to autism!!! A few months ago when we signed Michael up for the soccer camp, we also signed up to be a host family for one of the coaches. It has been months since I heard anything from the sports company (www.challengersports.com) regarding hosting, but today I opened up my e-mail to find that we have been selected as one of the host families!! These coaches are coming all the way from the UK and will be here for one week. They are scheduled to arrive Sunday(I will inform you more as I get info). Michael is VERY excited to have a coach stay with us especially from another country...he thinks that is just neat.

Smelling the roses

One of my favorite pictures of the boys!

















That is the only word to describe today! It was hot. 94 to be exact. I am almost wishing for the 50's and rain to return; but I know those days will be here before too much longer and then I will long for the warmer weather. We stayed indoors today and just relaxed after our day yesterday. Nick was in a better mood, and we only left the house to go for a romp in the neighbor's plastic pool! I might get one of those next weekend, Nick and Michael really liked it. I am also in a better mood today. Mike is usually able to cheer me up when I get down, and yesterday was no exception. He is now able to speak of autism in a more free manner, and it is not so "horrible" anymore. A few months ago he would not even say the word "autism", but now he will explain to people when Nick acts in a funky way (like screaming like a banshee because of a rotating fan) that he is autistic. He will mention in a movie or tv show if a character seemed a little "odd" that they could be autistic like Nick. In fact, one of his all time favorite shows is MONK....a show about a police detective who has major sensory issues on top of an uncanny ability to notice the smallest details. We have laughed ourselves silly over this show. We somehow find ourselves able to relate to these sorts of characters and see the humor in it. Nick teaches us in many ways, he does communicate...we just have to pay attention. He is not able to verbalize that he missed daddy this weekend, but he SHOWED that he did by following daddy around when he got home and "Hugging" him while he was on the couch. Mike was so touched that he called me over to see...Nick had placed his little head on his dad's chest and was just beaming. Mike was beaming as well. Nick had never "hugged" him before. A few minutes later Nick wanted to be tickled by daddy so Nick took his hand and placed it near him while he would curl up on the floor. Daddy tickled, Nick repeated. Yes, it is primitive, but it is communication at its most basic level, we just have to open our eyes. In some ways, Nick has taught us to take life slower...to stop and notice the patterns on the floor, the feel of wet grass on your barefeet(he walks funny with his legs near straight up in the air with each step), to "smell the roses". There is a scene in the movie "Little Man Tate" where Fred is riding a horse (again, Fred is a character with autistic traits) and he looks up and you see the world through his eyes. What he sees is a wonderful light show with the sunlight in the trees. That is how Nicholas will look at the sky...with the same face and expression as Fred. Just for one day I would love to get inside his head and *see* things differently.

One of those days.....

Today has been a hard day. I had to take both boys to work with me this morning and help prepare our shop for an upcoming inspection. Can you say "ONE More WEEK until I go on LEAVE!!" I am so frustrated with work right now I could just scream. Anyway, we were told yesterday to show up at 8am today. Mike has his Guard weekend this weekend, so I ended up taking both boys with me. Michael got up with no problem. He was very excited to get to work with Mommy. He got dressed, and ate some cereal for breakfast, and was ready in a flash. Nick, started out fine and good, but as the minutes ticked by and his daily routine gone to the wayside, he lost it. He refused to eat breakfast, and cried the entire time until we left. Once we got to my shop, it was no better. He cried for about the first 30min, then laid in the play-pen shaking his head for about another half hour or so. Kristine offered him a pencil to twirl, but that only lasted for about 5 min before he went back to wailing. After about an hour, he was ok, and I let him walk around the shop. There was another toddler there who would come up to Nick, but Nick either pushed him away, or maneuvered himself right past him. Nick spent the time staring out the windows, opening and closing doors, and peeling stickers off the cabinets. Michael actually helped us quite a bit by helping stencil a dolly(with full protective gear on.....it was funny!) and vacuuming out the drawers in one of our tool kits. He was a bit disappointed that we were not working on parachutes...he really wanted to help with those.

We came home, and I put Nick down for a nap. He woke up and is still out of sorts. He has wandered around the house crying and I have tried everything. I just wish he could tell me whats wrong. I saw a "normal" 1 1/2 yr old today, and it just made me sad. This little boy was interacting with people around him; even though he could not talk, he interacted. Nick was not interested in the slightest. He was completely oblivious to anyone around him. He completely lost it again when we went to vacuum before we left. He was literally petrified by it and ran to the nearest person who picked him up. He did not run to me, he did not seek me out for comfort..he was calmed down by a complete stranger(I knew him, but the kids do not). Try to think if any two year old you know would let a complete stranger hold them?? That is all for today, Mike just called and is on his way home. I might take little Michael out to a movie for being such a big boy today. Have a great weekend!

Michael

Michael went yesterday to another growth check with his doctor. All is extremely well!! He is 43.5" (he has grown 4" since we started 6mos ago!!) and is around 43lbs! He has not had any side effects from the shots (other than GROWING), and we hope to keep it that way. His Dr. was very pleased and did not change anything. He also said that we might be able to stop the shots when Michael enters puberty (as opposed to when he stops growing all together). So, he might be looking at only 8 years on the shots vs. 12 or more. It was a fantastic appointment. We are so excited to see him moving UP the growth chart instead of DOWN. He is very excited as well! He kept telling me all the stuff he is going to do once he gets to 48"--ride all the scary rides, go on ALL the water slides,etc. He was very happy to say the least.

We had to put the Jeep in the shop yesterday. Mike still could not get it to start, and we thought it could be the alternator. We took it to Firestone yesterday when I got home, and they did some testing on it. It turned out that the battery was bad. So, we bought a new battery and it is doing good for now! Nick missed two days of therapy so we kind of feel bad about that, but $h*t happens.

Mike is leaving this weekend for his annual tour with the Guard. I am on my own for two weeks. I have found daycare for both boys the first week, and for the second week I am on leave.

Nicholas is doing great! I have been getting hugs from him everyday and I absolutely love it. He will come up and give me a push when he wants my attention. Last night we had a tickle fest--I got to tickle and "wrestle" with both my little guys, and daddy got in on it too. There is nothing better than hearing their laughter and seeing them smile!

New Updates

I have changed the settings a little bit and added some links which are to the right. One of the links is to our WALK NOW page. In September, we are doing the walk for autism research in Seattle with our long time friends from eastern Wa. We have known them since Michael and Nathan were 18mos old and they have become our best friends over the years. Michael and Nathan were born on the same day and we met by chance when I locked myself out of the car at the commissary! We have been good friends ever since. Please do what you can to help raise money and support our wonderful boys in their journey. There will be more links added in the future as I find out more sites. Have a great weekend!

Happy Friday!!

I love Fridays! Today at work we went to a retirement ceremony. My old supervisor (not the un-liked one, but the one before him) retired after 21 years of service. It is amazing. You think that all these men are just macho type guys who never show emotions, but every single one of them I have seen retire has choked up. You go through your career working with some wonderful people who end up being a part of your family. I find myself choking up about retirement sometimes--in the 15 years I have been in, I have met some truly wonderful people, and some inspiring people. There really is nothing quite like being in the military. After that we went back to the shop and did a little work until it was time for PT. We went and played football-yes, even the four girls played--and really, it was fun. Normally we do calisthenics and running, but today was a "sports day". Mike brought the boys to visit me this afternoon and told me about their day. Nick had apparently said two words at therapy, but noone can remember what they were. One of the kids there said something and pushed Nick. Nick, thinking it was a game, laughed, said what the kid said, and pushed him back. Mike went to get his hair cut at a barber shop that had a rotating fan. Nick absolutely freaked out! We dont know if it was the noise or the fan that upset him, but he was in total freak mode.

Michael is doing good. He has a doctor appt. Monday to check his growth again. They might also increase his doseage if it looks that he has "outgrown" his current dose of 6 "clicks". He has been eating like a horse lately, so we shall see! I know for a fact that he is now over 40lbs.

Well, it looks to be a quiet night around here. Nick went into his room and put himself to bed again. He does that when he is tired--he will go into his room and crawl up in his bed and go to sleep. I had to fight Michael tooth and nail to go to bed when he was 2! Now, he still does not like it, but he goes. Tomorrow I am doing some volunteer work for the community, so I have to be up early. We are helping to paint an elderly persons house with the "Paint Tacoma Beautiful" project. Have a great weekend!!

Echolalia??

Today as Mike and the boys were leaving Nick's class, the teachers told Nick Bye-bye and waved. Well, when they got into the car to come home, Nick said "Bye-Bye" and waved! He does this sometimes. We will say things like "baby" and Nick will repeat it. This does not happen very often, which is why we still consider him "non-verbal". He does not use words or gestures to get what he wants. He will make the sign for "more" when I prompt him, but he has yet to initiate any "conversation" on his own. He HAS started to babble more since beginning the group therapy so that is a positive sign. I took more video of him today eating at the table, and waving his hands in front of his face. I will send that soon. Nothing much interesting going on here this week. I am tired right now so I will keep this short. We are all doing good!

What makes Nick different?

That question was posed to me today. What is it that makes Nicholas autistic vs. a normal two-year old? All I can say is that it is not narrowed down to just ONE thing that puts him in a different category. It is MANY things that when combined, make him stand out. Yes, a "normal" 2 yr old MIGHT walk in circles once or twice, they might even spin some toys every now and then or get fixated on something. With Nick, all of these are done to the extreme. He walks in circles around the house daily, he gets so pre-occupied with spinning that nothing else matters. The only person he is concerned about is Nick. Other senses can be heightened-he cannot stand public restrooms-everything there echoes. He also cannot tolerate the barber shop-the clippers drive him out of his mind. He has never brought us any toys or books that he is interested in, verbally he is an infant. ALL of these are signs of autism when the pieces of the puzzle are put together.

On the other hand, his intense fixation has lead to many surprises. Yesterday he put his pegs in upside down(he had the board turned over) and decided to spin the board with them on it. He has also figured out how to get bowls to spin by dropping them a certain height from the table. He can find every light switch in a house in a matter of minutes. He is a very concrete thinker. An example of this is when I was playing with a trashbag and handed it to him to play with(supervised-of course). He took it and carried it to the trashcan and put it in. He could not think of a trashbag as a toy. It is a trash bag, and it is meant to go in the trash. This of course has also led to some funny things. For instance, yesterday I was folding laundry and it got quiet in the house. Everyone knows that is when things could get ugly when dealing with kids. I went to check on Nick. Nick had put himself to bed. He was tired, so he went in his room, climbed on his bed, and went to sleep. What TWO year old would do that???

Nick started his group therapy today, and so far it is good I suppose. He got mad when he was not allowed to spin anything. Michael says he likes the other teacher "better" because she has a swing in the room(used to "wake" Nicks senses up). Michael is still "bored" every day. He spends the days watching tv, calling his friends, or playing video games. Ahhhh, summer.

Sticker boy

Nick has an obsession with stickers. Everytime he sees them he MUST peel them off. Over time he has managed to peel off all the stickers that Michael put on his bed around three years ago, all the stickers that were on the playroom door, and is now working on the stickers that are on Michael's dresser. Today he managed to peel off the big sticker on the a/c in one big pull. He has also done this with the stickers on his own bed. He likes the feel of the stickers on his hands. I have come home many times to find he has them stuck everywhere on him. On his clothes, on his arms, hair, etc. It is quite fascinating how he will sit there and keep plucking away until the stickers come off...he will do this activity for 30 min or more. Today he has been quite vocal as well. He speaks in his own little funny language, and ocassionally it will sound like an actual word. Today he was going around saying "UH!" followed by running to me with his arms wide open as if in a hug. We have been doing this for several weeks now where I would sit on the floor with my arms outstretched and he would run into them. I would then say "H-U-G Nicholas!!" and squeeze him. So, today when he started saying "UH!" in this manner I think he was trying to say "HUG". I have some comfort in the thought that he IS trying to communicate on his own terms, and that hope is not lost. Maybe he will say A word by Christmas. And no, Michael does not mind his brother pulling all the stickers off his bed :)

A very "stimmy" day today

Nicholas has been "stimming" much of the day. It started this morning with him spinning his peg board, then progressed to him walking in circles around the living room for a good 4 minutes! I captured the whole thing on our digital camera, but the video is 100MB and is too big to send anywhere. Even Mike said it was a great video and he usually has very few comments on videos I shoot! Anyway, it went into Nick walking on/off his peg board, and you just see him doing things over and over again. If anyone knows of a way to get this file to them over the internet, I would be glad to send it. I have since charged up our video camera and will shoot more with that. I feel that the video will give you a sense of how he truly is better than the pictures. You cant tell how fast he gets things to spin through the pictures! Then we went to the grocery store-Nick got excited over all the lights and that is when he started stimming with his hands-mostly flapping them up and down. I have relented into buying him baby food again. He refuses to eat so many table foods and I did not want him to become deficient in any vitamins. He will only eat soft foods or bread. We have figured out that Apple juice gives him the runs, and now so does the white grape juice. Water and Milk are pretty much it. Well, I better go for now. The boys are still up (thanks to late naps) and I am sure Nick is hungry.

Nick video

Never a dull moment!

On Thursday night Mike was preparing some soup on the stove. In a matter of seconds Nick reached up, touched the hot burner and burned his index and middle fingers. He has black marks from the burner on his fingers and it has blistered slightly. We have so far avoided a trip to the hospital because it has not worsened since Thursday night. I tell you, trying to tape up his hand is a bit of a challenge since he hates to have his hands held and he will also pick any loose ends of the tape off. Once it is on however, he seems ok with it. The kicker is that he will still touch the burners on the stove. We had to stop him from doing it again yesterday. Today I think I will go out and get some safety gates for the kitchen and hopefully this will not happen again.

Nick has a new thing to spin! He has taken to spinning his peg board. He turns it upside down and spins it so fast that it will fly off the table. He does not stick his finger on the little holes it has, but spins it by using his pointer finger in the middle circle of peg holes. He has also figured out how to spin his bowls by dropping them a certain way on the table. Now he has figured out that anything can be spun really, including himself.

Now I would like to talk about Michael. I talk a lot about Nick on here and not about Michael. Michael is just a wonderful big brother. He is understanding Nick more and more. If Michael gets up before we do he will get Nick something to drink and even something to eat! He is always concerned about Nick getting hurt and has even found ways to "reach" his little brother..Michael will hold up his hand and let Nick manipulate his fingers and put his hand on his forehead. We have heard comments from total strangers on what a great big brother Nicholas has and we could not agree more! Michael and Nick may not ever have those long talks about girls or sports that I envisioned, or a "normal" sibling relationship at all. But what they DO have is a bond between them regardless. I know this is a fact. Michael can bring out amazing things in Nick. For instance, last weekend we were doing yardwork and Nick was afraid of something. He was crying and before anyone could get to him he went right to Michael and put his arms around him. After a few seconds Michael thought he was ok and went to pull away. Nick grabbed him again and held him close, and Michael just put his arms around Nick and told him "It's ok Nicholas!" Yes, Michael truly is a great big brother and has shown us he is very brave in the last year! He is inspiring. Somehow he musters up the courage to endure shots on a daily basis and tells me they dont hurt even when he winces. He has no idea that it kills me everytime I have to stick him. I have done it a thousand times, and it still pains me, yet he endures it with such dignity beyond his seven years. I am truly blessed with wonderful boys! I have learned much from them.

Back to work....Yuck!

Hope you all had a great fourth of July! This weekend was a long one for me. Saturday we did not do too much. Sunday we went to Wild Waves again with Kristine (our wonderful babysitter). The boys loved having her there. Michael went down a couple of water slides with her, and we also got her on a few of the rides. She is real good with both the boys, and is like somewhat of an "adopted" aunt. Nick is just my little fishy. He LOVED getting into the water this time and even stuck his face in it! He loved the pool at Disney too, it just has to be somewhat warm! He can be very picky LOL! Monday we all just hung around the house recouperating from the abundant sunshine. Tuesday, I got the boys all dressed in their 4th of July gear(matching shirts and shorts--they looked very cute!) just to have them dirty them up "helping" us do yard work! I had not planned on doing yard work, Mike just sprung it on us after realizing "It's not too hot!"
After we got all cleaned up again (so much for matching outfits--they were tossed in the laundry) we went to Fort Lewis to view the fireworks and check out the "freedom festival". We splurged on "elephant ears", cotton candy, and some ice-cream. Mike tried to get Nick to taste an ear, but as soon as he felt the powdered sugar on his fingers he chucked it. He is funky about some of that stuff. If it does not feel a certain way it ends up on the floor. He will even spit out food he is chewing if it does not feel right. And once it is slightly soggy forget it. Then it was time to find a place to park and watch the show. While we were waiting for the fireworks to start, we parked beside another family that had a two year old. The difference was staggering. Nick was obsessed with the lights in their van and went over there countless times just to look at them. Michael and I were kicking the soccer ball around and Nick just followed me everywhere I went. He was trying his hardest to "figure" out exactly how to play this social game--he just kept following me and I just kept on saying things like "Hello Nicholas!" and he would just glance up and smile. At around 10pm the fireworks began and we all bundled up to watch (yes, it was 52f by that time!) Nick fell asleep 10 min into it, and Michael was asleep by the time we got home. After 4 days of bliss, I had to return to work today.....YUCK!!

What does his future hold??

It is days like today that get me down. There we were in McDonalds eating our lunch and watching Michael play on the indoor playground. I say Michael because Nicholas does not play. At least not like normal kids anyway. Nick just stood there, absolutely frozen in the middle of the aisle. There were other toddlers all around him, yet he never noticed them. He just stood there twirling his straw. I know people were looking at him, and it made me want to cry for him. It also brought out a protective side of me. The side of me that just wants to scoop my child up and protect him from the evil "normal" world. We wonder what his future will be like? I know that at only 2 yrs old it is still hard to tell, but we think about it more on days like today. Will he ever be able to live on his own? Will he have to live in a group home? Will he be able to tell me if he is hurt or in pain, happy or sad?? I know that he is still young and has made big improvements with the therapies he is getting, and I am sure he will progress to speaking eventually. It is just days like today that are hard. When you get a glimpse of what a "normal" life is, you suddenly miss what you never had.

Like I said before, Nick has progressed with therapy. He has done so well in fact that he starts going to a classroom after the holidays. (The center is closed all of next week) He has also learned how to open doors! Nothing is safe anymore! We went out and bought door locks and toilet bowl locks today and installed them. One of Nick's favorite things to do is put things in the toilet. He has put toys, sippy cups, and anything else he thinks needs a washing in there. We also have to put pants on him now at night because he will take his diaper off.

Last night was a cute night. You can see the picture above! Michael and Nick slept in the same bed! Michael simply adores Nicholas and at one point told me I was "breaking his heart" by moving Nick to his own bed. He was in tears and held his hands over his chest. What else was I to do other than let them sleep together? Nick seems to need his brother in the room in order to sleep. Nick looks up to Michael like any little brother, he tries to imitate his moves and loves it when Michael chases him around the house.

Just another day

Nothing much has been happening here the past couple of days. Still working on Nick's referrals with Early Intervention. Mike took copies of them today to therapy and we are trying to change them a little bit. We want to use the people we have selected ourselves; not the ones on the referrals.

Michael is now 43lbs and 42.5" tall!! I measured him last night and was pleasantly surprised. Not too much to write tonight. All is well, and we are looking forward to the long weekend!

No such luck

I talked to Erin again today about the autism study and it seems that we live too far away to be able to participate. Which is really a mixed blessing because with Nick soon starting classroom sessions, special instruction, speech, and occupational therapy who knows how much time we really would have had. Regardless of the study he will still recieve these services. I am still in the process of getting everything straight with all his referrals. I want him to get the services at the center he has been going to, so I have to go through all the right steps to ensure that our insurance will cover it. What it boils down to is I have to get their ok to use the people I want. The Birth to three center can never seem to get a hold of any of his dr's for their signatures so that has slowed us down a bit. On Thursday Mike will take the referrals that were sent to us so they can copy them and give them to the right people to get us started. I have recieved so many sources of information about what services and financial things we can apply for, that it truly can be mind boggling. I just take it one step at a time. I cant even begin to tell you how many phone numbers I have gotten or how many phone calls I have made since this all began.

Nick has seemed to latch on to one specific word now. "Buh!" Yes, he plays Buh with himself quite a bit now!! I guess we can consider that to be his first "real" word...."Buh!" For us it is simply a joy to hear his sweet little voice.

It is going to be a long summer! Michael has been out of school a little over a week now and we have heard on many occasions "I am Bored!" He is driving us batty with all day at home and nothing to do. He was intent on making a frog trap out of our front yard. His "trap" consisted of half a tree, the leaves to said tree, and large amounts of dirt and mud. All of this somehow was supposed to entise a frog to leap into a baby wipe container and be his forever. He even recruited the neighbor kids to help with this project. It succeeded in making a big mess and no frog. Oh, and can I add that the sun is shining BRIGHT at 4:50 AM??!!! Of course he wakes up willingly at this time during the summer, but when school starts he is suddenly tired??!

"Buh!"

That is Nick's word for "BOO!" He was playing with his shadow on the wall and running up to it and saying "Buh!" He did this for about 10 min and we just could not help but laugh! The fact that he even did it appropriately (meaning he actually USED a word in the right manner) is nothing short of amazing! He was laughing and carrying on and having a grand old time! And who could resist the urge to play this little game with him?? So, Michael, Nick and I were on the floor playing "Buh!" and that turned into a game of "get Michael!" We also practiced waving with him. Mike went on an errand and I stood at the door holding Nick and we said "Bye Bye Daddy!" and I took his hand and waved at daddy. Mike waved back several times, and before we knew it, Nick had waved a bit. I know this may seem small and insignificant to most people, but with kids like Nick this is a big achievement. It is hard for him to do just the simple things, especially in social situations. It is so gratifying when you see just even small steps forward. Today, Nick let us in, and we eagerly accepted.

Getting Somewhere...slowly!

I called Erin at the University of Wa. today and spent a few minutes on the phone with her discussing Nick. They are taking toddlers up to 30 mos old; so he is right in there as far as that goes. What she did not know about was that since we are military and are prone to moving (they want people in the area for at least 2 yrs during the study) she was going to check with her director and let me know tomorrow if he is eligible. She explained to me that if he completes the phase 1 portion then it is a "flip of the coin" if he gets chosen for the phase 2 portion. Phase one consists of 9 evals over a two month period and also EKG's(?) and MRI's taken of his brain. Since we already have an ASD Diagnosis from his developmental ped. it should make the process a little faster for us. I also called the clinic to get the referral #'s for his speech and OT, but had to leave a message. Most likely he will be getting these services through the center he is already at. They have already requested one of their new Speech therapists to take him on. We have another appt. with his Dr to discuss Autism in depth on the 27th of July. So, basically the ball is out of my court for now, and I am waiting again.

With all of this going on, I almost forgot that Michael is due another growth follow up! It has been 3 mos since his last appt. and we have an appt. set up for the 17th of July for him! I swear, it is neverending. Above are some pictures of the boys actually smiling! Today we started back up with our P.T. and it was 91!!! Yes, it DOES get hot here!! I am thinking of getting a plastic pool for the boys to play in out front. I am so glad we splurged and got a portable AC unit...that thing has been our savior! I am also back to dieting. I stepped on the scale last night (I know, I shouldn't have) and did not like what the numbers were reading (Do we ever??!), so I am determined to diet and lose it. Wish me luck!!

Our WALK NOW webpage

Here is the link to our WALK NOW webpage. We will be walking in Sept. to raise money for autism research.

You can also click on our team webpage at the top of our main page.

http://www.walknow.org/06sewk/nickweger



You can find out more about autism here:
http://www.cureautismnow.org