Wednesday, June 27, 2012

Just a quick update

I had thought today would be the day of more info but because I am going a million miles an hour I am a day early. I guess it is better than being a day late. However I still have some information to share. Its not much but I am up and this is killing time before H wakes up for his two hour period of just being awake.

After a few nights of the blanket we are seeing progress and a pattern. Once we give him the Melatonin  about 30 min later he is done. He has to however fall asleep on the couch. Not ideal but honestly it is sleep from about 9:30pm to midnight. Its the two hours in between that is not fun for any of us but around 2am he is good till 8am. The blanket has made a huge difference. It took a little getting used to but now he seems happy with what he has.

Tuesday we got some news that floored me, let me speechless. We have a friend on the East Coast who has a son Landon who has Autism. They have a facebook page Paws 4 Landon-https://www.facebook.com/PAWS4Landon. The Clark family is comprised of some pretty amazing people. Jaime and Chris used to fight fires together and just recently regained contact with one another. I was shown their Facebook page through Chris and felt for this family. Finally after a few weeks of looking at the page there was a post that Michelle put up and I commented. It didn't take long for a friendship to form. Suddenly I didn't feel so alone. Shortly after that I came across her friend Christine who is in El Paso and her husband is Active Duty Army. I feel now like I have known these ladies forever! Just recently I became friends with Robin Tenace who has now proven to be a savior. Our children are all on the spectrum and all dealing with similar things. Despite the miles between us all we have just formed a bond.  It has made me a little less stressed and little more at ease that I have people I can count on. 


I never knew how true those words would be until my lunch that day. Monday after my blog went up some friends and family came through in ways that warmed my heart. Seeing as insurance for now won't cover therapy or items we need for H we have to pay for all these things out of pocket, rely on state funding and donors. The message I received on Facebook caught me off guard, took my breath away and left me in tears of happiness! Michelle and Jaime Clark had Robin make a weighted blanket with the correct amount of weight for H. It will be Buzz Lightyear! How awesome is that?! I called Chris right away and we both just cried. Finally our boy was going to sleep well with an item as simple as a blanket. We are on our way now! 


This morning I got a call from WTRC about a anonymous donor who wanted to make a blanket for us. I told them the amazing story of our friends and asked that the blanket go to another family with a child like H. Again my heart was smiling. God is good. There are still wonderful caring people out there who will help a perfect stranger. It makes you put things in perspective. I was given this challenge because he knows I can handle it. I am facing this challenge head on and going to be the biggest advocate for my baby that I can be. We are going to take all these road blocks and turn them into speed bumps. We are full steam ahead and not going to stop.

For those that had offered to help the items we are still needing to work on getting are the lap pad which we want to order through Robin Tenace and those 25.00. The lap pad would be used while H is sitting to help keep him from getting all wiggly and keep him calm sort of like the blanket just not as big and easier to tote around.  The other thing we are in desperate need of his a product from Z Vibe.http://southpawenterprises.com/OralMotor/DZ-VibeTipAssortmentKit.asp . This will help with his issues with his oral fixations. The pressure he can get the chewing will help him with anxiety and over stimulation. These items can be essential for him to not go on overload. Eventually we would like to get him a weighted vest but the ones we have come across start at around 170.00!! That is just not in our budget and we are hoping that if we do qualify for some assistance from the state we can purchase these items to help him.


For now we can do small things to help him such as wearing hats and sun glasses when we go into stores with heavily used florescent lights to help keep from being over stimulated. He likes to look at the lights but to him the lights blink which causes him to lose control. So when he is at school or out in places like this we will wear sunglasses and hats. He likes both ok but hopefully with regular use he will realize how much wearing these help him. We will continue with his back pack filled with things that go such as trains and cars. Anything that spins will keep his attention forever. Since he loves vibration we will use the toothbrushes that vibrate and see what toys we can find that do the same.


I find myself daily educating myself on what we have on our hands. I am going to order a tool kit from Autism Speaks tomorrow with all sorts of info we need to help better care for our son, what therapies will work best with his condition and just what to expect sort of.  I guess its the instruction manual they forgot to give us at the hospital when we brought him home ha ha!  I have also found a few support groups on Facebook that are loaded with helpful information and people asking questions of things I have not even thought of but know they totally apply to us! I really feel on top of things and like I have brought  my A game! Lets just hope we keep it that way. 


Thank you everyone for all your kind words, love and support. Chris, I and the kids could not make it through this without all of you. We are so blessed to have such amazing people in our lives who will reach out. You warm my heart and make me want to do what I can to pay it forward. Hopefully soon I will find ways to do so. I can never say how much we appreciate all of you and that your love and support are what gives us hope we are going to be able to tackle this and give H the best possible opportunities we can!

Last night on the couch with his loaner blanket. 

I guess he had a rough day judging by his hand lol. Again though he rests peacefully  now that he has what he needs! 

I guess his chew toys are not enough so the poor mermaid gets it!