Saturday, July 01, 2006

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.

Thursday, June 29, 2006

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!

Wednesday, June 28, 2006

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??!

Monday, June 26, 2006

"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!!

Sunday, June 25, 2006

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