Since yesterday was Mothers Day, I wanted to share this song with you. It is on the 4th Signing Time DVD. I copied the lyrics from the Signing Time website. I hope this is ok. You can see the words to the song, Shine by going to www.signingtime.com. It is the site that produces the best DVDs to learn sign language. They have helped Tyler a lot. I think this song summarizes Tyler. I wish you could hear it! There is a link on the website to hear it play, but I cant get it to work:
http://www.signingtime.com/resources/music-songs/
SHINE
Zane Alexander Gardner (11/12/1998-2/11/2002)
Zane- you taught me that heroes come in all sizes. Thank you for helping me let go of the typical timelines
so that Lucy was free to reach milestones at her own pace. You helped me believe in Lucy and now Lucy is
inspiring so many others. You gave me hope, and hope is the ultimate gift. You still inspire me. ~R
Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I dont mind
With lists of things youll never do
Until somehow you do
And you do you do you shine
The days and months and years,
they run together
Is it just one day? Or is this forever?
Youve taught me in your lifetime
More than Id learned in mine
And you do, you do, you shine
Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine
Im so glad you are mine
And youll shine in your own time
Well, maybe Im too close to see you clearly
Or is it now my role to simply believe?
Youre just one of those mysteries
That may never be solved in time
But you do you do you shine
And Sammy will do what Sammy will do when Sammy is ready to do it
And Trevor will do what Trevor will do when Trevor is ready to do it
And Lucy will do what Lucy will do when Lucy is ready to do it
And theyll do it in their own time
Yeah, theyll Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
Im so glad you are mine
And youll shine, and you shine
© Two Little Hands Productions 2008
www.signingtime.com
I want to apologize for my outburst earlier. I know that we are getting a Dream and I should not complain. I guess I was just disappointed that Tyler could not experience Give Kids the World. I have contacted his geneticist in KC and we may have to take a trip up there to see the geneticist.
Please don't feel like you have to apologize! I would be upset, too.
We refer to him as the Doom and Gloom Doctor, but right now it appears that doom and gloom is what these agencies need. I am hoping he can help. If not, we will enjoy the gift we have been given. We are blessed that are son will live past his Wish trip whereas I know that many children will not have this opportunity. We are blessed to have him in our lives.
I am glad you are going back to the geneticist and hopefully they can shed some light on all of the issues!
I have also been having problems with my sons case manager. She did not show up for his last IEP and it was DH and I and then all of the staff members that deal with Tyler at his school. It felt as if no one was on our side. I know that they do the best they can with the resources that they have, but there are 24 kids in a Pre-K class that is a mix of 3 and 4 year olds, special needs and normal kids. I wanted him to go to a more specialized pre-school, but they lost their funding through the state in the fall so he lost his chance to go there. Then his IEP was filled out wrong as his speech therapist had never written one before. His physical therapy needs were put on the wrong page so I did not know that he was not receiving physical therapy until December and his IEP did not get corrected until February. Needless to say his torticollis worsened. His club feet have also gotten worse. He was supposed to be done with his AFOs when he turned three and he is almost four and there is no end in sight. It is really apparent when he tries to run. He trips over his feet a lot. This setback occurred after I spent two years of taking him to hydrotherapy and physical therapy bi-weekly and almost had the problems fixed. He has been receiving speech therapy the whole year, but he does not say many more words and he still cannot feel food in his mouth and chokes often when he eats.
Oh no!! IEPs are such a pain! Gosh, I hope all of that gets fixed. More hugs your way!
Then today my friend told me that her autistic son just started to receive compensation for her son, who just turned four. He receives free pull-ups, diapers and wipes. I emailed Tylers case manager to ask how I would get Tyler to qualify for this and she tells me that the form had to be turned in by September 22, 2008. She is just telling me now! She told me that I could apply this fall for 2010. If Tyler is still wearing diapers in 2010, I will pull my hair out. I am going to work really hard at potty training him this summer. I have been told that the delay is due to low muscle tone.
However, I just received some happy news for our trip for this September. I have diligently been watching airfare. The lowest one way it had gone has been $99 before taxes. It was $89 two days ago when I called AAA, but I procrastinated and did not book as I knew it was a 3 day sale. I have checked it several times today and then all of a sudden tonight it was $79 before taxes. This is only the return part. So, now we have a return flight from Orlando and I just need to find a sale on a flight to get there. Finally, some good news to share!
That is GREAT airfare!! Fabulous news!
I have had no such luck! I guess that is what I get for flying on Labor Day weekend and a return flight on a Sunday.
Several updates:
1) My husband wanted to see what I was spending all of my time doing on the internet and he saw in my inbox all of the disboards emails. I showed him Noahs wish trip report. He thinks Noah is so cute! Then he asked if we had one of these crazy things. I said yes and he wanted to read it. First, he said that I wrote a book! Then he pointed out several other things. First, when Tyler came out of NCIU after 2 days, he spent 2 more days in special care before going home for one day and being readmitted for 3 more. I guess I shortened the time he was in the hospital. Second, he did not like that I listed his occupation, but I am leaving anyway.
2) We received the date that we will arrive in Orlando and it is November 21st. The Dream Factory has reserved a condo for us. I do not know anything else right now.
3) I probably should not have done what I did next, but I did it anyway. It has been a frustrating week and so I sent a very polite letter to GKTW and asked why Tyler did not qualify to stay there. I included some of the background of what he went through. I figure at this point it cannot hurt at least I hope it wont hurt anything. I hope that I do not upset the apple cart at the Dream Factory.
4) I talked to one of the geneticists staff members on Monday. They took down some more information on Tyler. They were not aware of the new European Journal of Medical Genetics study and they were going to try to look it up. It contains new information about Tylers missing chromosome parts. They also said that there was a new FISH test out to provide more details about what exactly Tyler is missing and how it will affect him, but I am not sure our insurance will cover it. I explained to her that we had had four tests done when he was born and they totaled over $4,000. They did one test through the amino, tested me, tested DH and then the doctor at the hospital without our authorization tested him again once he was born. It took my husband almost a year of fighting with the insurance company to finally get them paid and they were refusing to do so. So, I am not sure if we will have this test done. Now I am just waiting on the counselors to research more, talk to the geneticist and call me back. They also know about my problems I am having with his wish.
I am very grateful that he had been granted a wish. I hope it does not sound otherwise. Thank you again for everyones support.