Say a little prayer…

Recently, I have been in a mood.  Just one of those, don’t know why I am feeling this way and can’t quite figure out how to get out of it moods.  This weekend, Jay finally sat me down and asked me what was going on.  I told him I really didn’t know.  But the more he asked and the more we talked, the tears started.  We have Nathan’s eye doctor appointment tomorrow and I am terrified of what we will hear.  I know in my gut what they are going to tell us, it is obvious to us and to everyone around him.

Jay looked and me and said, “there are three things that he can say to us.
1. It has gotten better.
2. It has stayed the same.
3 It has gotten worse.
And we know the answer, so why are you worrying about it?” But I don’t want to hear that things have gotten worse.  I want there to be hope.  I want them to get better.  And yet, they won’t and I know this, but have yet to come to terms with any of it. I watch my little boy trying so hard to do the things that he should be able to do and that should come naturally to all children. He tries so hard to read and it is the biggest struggle for him. He has tools that he uses that help him see the words, but even then he struggles.

We have lived in the same house for four years and have not moved any furniture or changed anything and he runs into things all the time now. The steps in the front of the house he can’t see anymore and struggles to go up and down them. He runs into things at school. It is hard to watch what should be your very independent 9 year old scream for you to help him cross the street because he can’t see the difference between the sidewalk and the curb.

So, I go to bed tonight worried. I know the outcome, but it doesn’t take the dread away. I pray that God has a bigger plan in all of this and I know that to be true. His purpose for Nathan is great and I am thankful that most days I see the joy in Nathan’s eyes as he doesn’t really understand all of this. I think for now I am thankful that he doesn’t because I do not have the words to explain it to him. For now, we are thankful for what we have and feel blessed that he is who he is, because I wouldn’t want him any other way. In my eyes he is perfect!

As you know as well, Madison has Tourette’s Syndrome. Recently, her tics have gotten worse and we visited with her doctor. She had been on some medication to try and help with the symptoms but it seems that it has lost its ability to help. I asked if there was another medication we could try and she said that at this point it has morphed into something out of her comfort level and would like for Madison to see a Neurologist. We go on the 30th to see a Specialist who deals with Tourette’s syndrome. I am hopeful for Madison that this will be something that she can get relief from. She does not like it and she is embarrassed by the things that her body does. Thankfully, they are mostly facial tics and a few sounds and I don’t know that it is too obvious to those who don’t know her too well, but I know that she will feel better if she can get control over them. Please say a prayer for her as well as she struggles daily to be a normal 11 year old girl, living a very abnormal 11 year old life.

Stacey

Special Olympis Soccer Tournament 4/28/13

Missing in action….

So we have been down a computer and it has been hard to write anything on my phone. To be honest, I am not tech savvy enough to know how all of this links together. So for those who don’t know, I do have a Facebook page as well that I have been updating more frequently. It is easier on my phone:). If you would like to check it out it is

http://www.facebook.com/sothathecansee

Nathan is doing well right now. He has started soccer with Special Olympics and just had his first tournament. It was so fun to watch him interact with his peers and get to meet other families who are walking the same walk we are. I have said it feels like home. And trust me, that is the best feeling in the world!

We are still working on getting his medicine right, but it has been going pretty well lately. (Hold my breath!). But for today, all is well and that is all I can ask for!

Stacey

Autism Awareness Life…

As many of you know, April is Autism Awareness month. This is a little known fact that I was unaware of until a couple of years ago. It didn’t impact me, it wasn’t even on my radar. It is now. It impacts me every moment of every day. There is not a moment that goes by that I don’t think about the impact Autism has had on me and my family’s life. We have been affected and changed by it in so many ways. Some for the worse, but so much for the better.

The last couple of years have definitely been an uphill battle. You quickly realize that you become the voice for your child. No one else is going to speak up on behalf of Nathan. Good and bad, we will fight for him to have every opportunity that is given to any other child. We have to be his advocate. Nathan can’t stand up for himself and a lot of times can’t articulate what he thinks or feels. Words get jumbled, events get mixed up and so we have to make sure that we are always on top of situations to make sure that he isn’t on the receiving end of something that he shouldn’t be.

I cannot remember the last time that my husband and I had a date night with just the two of us. We do not have the luxury of calling a baby sitter at the last-minute so that we can go spend some much-needed time together. We go everywhere as a family and even then that can be challenging. If we do something with just the two of us, it takes weeks to coordinate with my parents who are the only ones who have ever watched Nathan. It does happen, but it is rare. He is a high energy kid who needs constant interaction. They adore him and are so good with him. We have been blessed to have a family that has taken Nathan’s diagnosis and done their own research. They have never judged or treated Nathan any differently. They do not fear him, they LOVE him. There is nothing greater than watching him play with his cousins who just know him as Nathan and nothing more. So to Josh, Tessa, Tyler and Jace, Aunt Stacey thanks your for the love you have always shown to Nathan. You are all patient and loving beyond words. To our family who has stood in support of this journey with us, we feel your love. You have cried with us during the hard times and rejoiced with us in the triumphs. We could not be more blessed to have you with us on this journey.

To Nathan- you are NOT broken, you are perfect! Do not ever let anyone tell you anything different. You, my dear can do anything you set your mind to. You are just plain amazing. I am beyond proud of everything you do. You bring me joy and hope. You light up my life in a way that I never knew was possible and I would not ever change anything about you, for I am the luckiest Mom on the planet!

I am glad that there is a day that brings awareness to the fact that 1 in 50 children have Autism. It is time that we start researching this epidemic. It is time that Doctors start diagnosing properly for early intervention. It is time for more funding to be spent on educating these wonderful children so they do not fall through the cracks. So as glad as I am that there is a day to celebrate these amazing individuals, it is not just A day to me, it is my life. And I wouldn’t change a thing.

Stacey

A trip to see the Mayor

A couple of weeks ago, I was contacted by the Parker Mayor’s office.  They indicated that they Mayor had received something from overseas for Nathan and would like to present it to him in person.  I did not get any additional details other than when they were holding their next town hall meeting and if we could be there.  Of course we agreed to come and were intrigued by what it was.  The meeting was last night and we prepped Nathan for what we thought he could expect.  I have never met a Mayor and was not sure what this adventure would look like.  We reminded him to say “Thank you” to whatever it was that he was given and that more than likely he would want to shake hands (we practiced that as well:).  We got to the town hall and they had a  pamphlet that said there would be a presentation to Nathan.

They started the meeting and then the Mayor, Mike Waid walked down into the public seating area and turned the microphone on and started to speak to us.  He indicated that he received a letter in the mail from Nicaragua.  The envelope only said  ”The Office of the Mayor Township of Parker Colorado”.  He said he was interested in what would be in this envelope.  Inside was a letter to him from a gentleman who lived in Nicaragua and had heard our story on CNN.  Apparently, they only provided Nathan’s first name and that we lived in Parker, CO.  He wanted to send Nathan some postcards before Nathan’s eyesight declined any further.  He assumed because this story made national news, that Nathan must be receiving postcards from all over the world and that if he just put Nathan, Parker, CO on an envelope, the post office would know how to get it to us.  unfortunately, his letter was returned to him.  As he stated in his letter to the Mayor, he could have stopped there, but he didn’t.  He went on the internet and Googled Parker, CO and obtained the address for the Mayor.  He then asked the Mayor if he could help to locate our family.

His letter went on to say that whatever it would cost to locate us and send us the postcards, he would reimburse the Mayor.  He asked that in return he simply receive an email letting him know that he received the letter.  Inside of the letter was another envelope that plainly said “Nathan, seeing the world through postcards, Parker, CO”.  I love the fact that he thought that it would get to us.

I am touched that this wonderful gentleman didn’t just throw away his letter and forget it.  He spent his time and money to make sure that we received his beautiful postcards from his home.  He wrote a letter to Nathan and the last line had me in tears.  He said, “Nathan, Be brave, for the world is watching and you are leading the parade!”

It is moments like these that I am in awe of others.  I have no words to express how much it means to me that he sought us out and that it was important for him to make sure that we received his letter and postcards.  It is people like him that have made such a lasting impact on our families journey.

Nathan and Madison got an opportunity to meet the Mayor, sit in his chair, bang his gavel and were given a lot of cookies:) I am very grateful for their hospitality and making us feel so welcome.

Please make sure you click on the link below that says letter to see this amazing letter that we received.

Stacey

Letter

 

Rollercoaster Ride

I feel like I am on a roller coaster lately.  We have been receiving so many responses since the news story aired about our family that it is hard to catch our breath.  It is overwhelming but in the most wonderful of ways.  I am feeling very humbled by people’s responses to our situation but also so grateful as I know that our story could be so much worse.  I have seen it first hand.  I spent the entire summer at the hospital with Nathan and saw sick children everywhere and every time I saw one I thanked God that it was not my child that was laying in a hospital bed.  I know that it can always be worse.

However, lately, things have changed with Nathan.  He is so tired all the time and I am wondering if it is the effects of his medication or the cold he is recovering from.  I will speak to his Dr. about this and see if there needs to be a change made.  Also lately we have had some of the anger issues come back.  He seems to be very agitate in the afternoons and it is directed towards me.  I think he tries so hard to hold it all together at school, that once he gets home he just let’s go.  I try to get a snack in him as soon as we walk in the door and let him have some “down” time, but he never has “down” time.  He does not know how to sit still.  He is always going 100 miles an hour until his head hits the pillow at night.  We have been trying to put him to bed a little earlier in the hopes that it will help him be more alert at school and keep him calmer when he comes home.  So far, it has not been working out too well.  I get reports from his school that he is falling asleep and I just can’t seem to figure out why he is so tired.  So, Mommy is on the hunt for information.  Perhaps he needs a supplement or something to help perk him up.

It has been so cold here the last few days that they have had indoor recess and he has been able to go into his general classroom and play with his peers.  That seems to be the highlight of his day and he is eager to tell me about the kids he is playing with.  It is so nice to hear that he is playing with some new kids and I hope that he is developing some new friendships.  I want so badly for others to understand him and want to be around him.

As for me, I am tired.  I want a normal existence, but I realize that this is my normal and honestly I am ok with it.  I truly wouldn’t trade my life for anything, but I am not going to lie, it is hard.  Ask any parent of a special needs child and they will probably say they are tired.  We don’t have baby sitters because honestly, I don’t trust anyone to understand my son.  I have left my kids with my parents, my brother and sister-in-law and my neighbor.  That’s it.  I know there is respite care out there that is fantastic and maybe someday I will be more comfortable going that route, but for now, we keep it in that small circle.  He is comfortable with all those people and they understand him and love him more than anything.  It eases my mind when they are not with me to know that they are with someone who loves them.  For Christmas, my parents gave us a gift card for dinner and a night out (over-night) and I cannot wait to take them up on the offer as Jay and I need a date night.  It has been way too long and I miss having just us time.

Again, to all of you out there who have taken time to send us a postcard or a letter or some other special object, it means the world to us and we are grateful for all your thoughts and prayers.

Stacey

Local News Story

Recently, I was contacted by our local newspaper to see if they could come and do an interview with us about our story.  I have been blown away by the response we have received since the airing of the 9news story.  Every day we receive a full mailbox and most days we have a package on the front porch.  I hope our mailman is not getting frustrated with us:)  It has been very humbling for us to see the amount of support that is out there.  We are loving going through all the postcards, brochures, dvd’s, personal pictures, personal postcard collections and the list goes on.

We went this weekend to meet with a family who donated a CCTV to us.  If you saw the news piece, this is the same type of machine that he uses at school to do his work on.  He puts the paper on a tray and it magnifies it on to a screen and he can slide the tray back and forth to read.  It is amazing to have access to this in our home as it will help us with his work at home.  Homework has been a struggle as all we have had is a small dome which is hard for him to use.  While at their house, we met their handsome young son, John who is 9 and also Autistic.  It was so wonderful to see Nathan connect with someone who is like him.  They got along really well and John even gave Nathan some of his Legos.  We do not live close to them, but we all decided it would be worth the travel time to set up playdates so that the boys could play together.  I would like to personally thank the Kyser family for their generous donation and the time they spent sharing their journey with us.  It is through these connections that I learn more and more.  I realize, we are not alone and there are others out there who want the exact same for their children as we do, to be loved and respected for who they are.  I look forward to getting to know them better.  Again, from the bottom of my heart-THANK YOU!

We have also had an amazing offer from a breeder who would like to give us a Labradoodle puppy who we could train as a therapy dog for Nathan.  The litter is not due until June/July so Jay and I are thinking very hard about this generous offer.  My gut tells me that we have to jump on this offer as it would be great for Nathan, but we are making sure we are not just falling in love with the beautiful face of a puppy and that we are making sure that we can take on that additional responsibility.  I have been in contact with trainers to see what we would need to do to make sure that it would be the best fit for Nathan and our family.

Another special Thank you to the 5th grade class of Ms. Strabala.  Since adopting Nathan as an honorary 5th grader they have done special things for him.  Right before the Christmas break they brought him into the classroom to give him a present.  They gave him a huge Transformer that he loves.  He plays with it all the time and I think is pretty tickled by the attention he has received by the older kids.  They are an extraordinary group of kids and I am so glad that Madison is surrounded by great people with big hearts.  It means a lot to me that they have taken him under their wing and are watching out for him.

I have been cataloging all of the postcards and things we have received and let me tell you that I have multiple spreadsheets going.  It has almost become a full-time job trying to keep track of all the places that are coming in.  I am doing my best if there is a return address to send a thank you note.  If you have not received one yet, please bear with me as I am a little behind.  Nathan and Madison’s school have put maps up in the hallway and I will take the postcards to them tomorrow and they are going to identify all the places that we have received so that the students can see the response as well.  It is a great geography lesson for us all!

I have attached a link to the article that was done by the Parker Chronicle.

Thank you all for everything, we appreciate it so much.

Stacey

http://www.ourcoloradonews.com/parker/news/parker-mom-shows-son-the-world—with-postcards/article_7c840532-59df-11e2-8fb5-001a4bcf887a.html