We are family

First of all, Happy 30th Birthday to Mattie! He’s the happy recipient of 30 micro brews for his big day! We love you, Matt!

We spent most of his winter break/birthday week sick :( We all healed up quick enough to get some yummy ribs (his choice) to celebrate last week. It was nice having a whole week off to spend time together. Noah got pretty used to having his daddy here everyday after naps. Play pals :)

Speaking of naps…. Here is a cute picture of Ash curled up between Noah’s legs to keep warm. Normally she doesn’t have much to do with Noey, so that made this moment exceptionally picture-worthy!

This past week we had Noah’s yearly IFSP meeting. IFSP stands for Individual Family Service Plan, it’s where all of Noah’s service providers (i.e. therapists) come over, and we talk about last years goals, and set new goals. The EIOD, which is the county chair for Early Intervention also attended this meeting (she approves or denies services). Noah must have known how much importance she carried because he went right over to her and was his charming little self! :) I think she was sold on his big life, she approved everything we requested AND MORE!

As most of you know, we have a lot of trouble with Noah keeping his glasses on… endless torture for us all. Early Intervention is approving for him to receive a Vision Therapist come and meet with him and try to figure out the cause of his aversion to wearing the glasses. (sensory issues, physical discomfort, etc). Hopefully, it will be a behavior change we need to make and things will improve, but we are so thankful that we were given the “go ahead” with this next step! ((plus, I never knew this existed!!))

We are also going to start receiving consults with a Communication Therapist. This differs from a Speech Language Pathologist in that they will work with devices to help facilitate communication. They will work to get to know Noah and see what style of device will be best suited for where he is developmentally. We are very optimistic about this consult process! We have already been working with a bare bones device called a BigMack. It’s essentially, a big red button that if Noah pushes, it will repeat a previously recorded word, sentence, or phrase. Right now, we have been working on the words “Marshmallow” because, well… it’s the most motivating thing for little man :) Secondly (and probably more functionally important), we are working on “more”.  (below, in the image, I was signing “more”, and as you can see, Noah was clearly paying attention to my hands. This is a BIG deal for communication. His eye-contact and paying attention has been consistently improving… which correlates with him beginning to imitate and express more)

 Noah has been quite receptive and expressive with understanding and imitating “more”. Motivation is a HUGE deal though. But isn’t that true with us all??

Over all, the IFSP meeting was greatly encouraging and has spurred me on to push him even harder to achieve all that he is capable of doing.

Lastly, we were also given permission to increase his Spec Ed therapist from once a week, to twice a week! She works on pretty much everything! So, it’s great that we can have her twice a week to create an even more structured therapeutic experience for Noah.  (now, we just need to find another opening in the calender book!?!?!)

Above, is a picture of Noah playing on the climb wall at developmental playgroup. He sure enjoys walking along and grabbing the stones!

While we were waiting to meet with the Geneticist and Neurologist last week, Noah got a lot of time playing with daddy and all the toys at the doctors office.

And who can resist a young boy in an old woman’s nightgown :) 
Since receiving the news that Noah has Angelman Sydnrome, we have been through the gamut of emotions. Optimism has been the overwhelming winner, and for every good reason. I think it will prove to be a huge benefit as we (occasionally) trudge our way through this new and deeper understanding of just who Noah is as a person and help us to embrace his qualities and differences. Our therapists have been nothing but encouraging. Since AS isn’t a common syndrome, it’s hard to find people who are experienced in treating the symptoms and challenging children with AS. Despite the rarity, our therapists have reached out to other professionals and been successful in finding guidance for working/treating AS. We have a bunch of co-treats with therapists who have experience with AS in our future (which are when two therapists join together to work with a child). I think it will be a big help for everyone involved!
There are days that are tough. Lots of them. It can be sparked by something as simple as the woman working at the grocery store giving out stickers and asking “which one would you like?” to seeing other little boys and girls doing “neuro-typical” things. But, if I’m honest with myself (and you, since you’re reading this) the tough part is letting go of MY dreams, MY expectations and making and setting new goals, new dreams, new hopes. 
Noah is easy to love. Waking up to his smile every morning is enough motivation and hope that I don’t need to set new goals or hopes. All the hope in my world is right here, pulling on my pant leg to stand up, in this charming little spirit. 
I love you Noah Dash. 
Be good to one another,
B


One thought on “We are family

  1. I love the photo of him in your nightgown! Ace and I laughed at that:) I am glad you are getting everything you need to ensure little Noey is taken care of. I also love that he is working on “marshmallow”! Love you guys. Pray for you daily little man:) Muah, Love Auntie Chi Chi

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