Roa has been a handful. To say the least.
He loves school. He loves his music group, his conductive Ed., his speech and OT times. He loves staying busy. Go go go!
Like a typical, spitfire, 3 year old, Roa wants things his way. Or no way at all. Like a typical, non-verbal child, when his desires are not recognized...he gets FRUSTRATED!
Arching, crying, red-faced yelling, tantrum time. This special behavior, of course, is reserved for mom and pop. Which is a good thing, I guess. But hard for us.
We are working on Roa's MyTalk application for his iPad with Functional Kids and the school so that he can have more outlets to communicate besides our few pictures, the Yes/no choices app, and the "pick a thumb" choice making method that we usually use. When Roa goes "to the dark side". It doesn't matter what choice you give him....he is flat out pissed!
Which, at this point in the Thayer house, is a pretty typical emotion. After 6 years with the company, Bryan was laid off last Friday. He was given a small severance package from API but was told that our insurance is done at the end of the month. Insurance is GOLD to a family with special needs. With therapy and doctoring every month, every day of the week,...with
special equipment etc, that cost a fortune,..we are scrambling.
Currently we are working with Handi Medical Supply to push throughout Roa's wheelchair order so that it is not out of pocket. Lisa from Handi has been a rockstar trying to make this happen. We are also working to get Roa on Medical Assistance and SSI to help pay for some of his doctoring and therapy costs. Roa has Botox and phenol injections at Gillette on Tuesday
next week!! We are praying that $15,000 bill will be covered!
We are job hunting. We met with our financial advisor, Saint Paul, as I lovingly refer to him as. We are scrimping and saving.
Life is full of ups and downs. We realize that. We pray. We work hard. We will be okay, as we are fighters! But once in a while the curve ball hits you a little bit too hard and you need to curse before you stagger on with your battle.
Just ask Roa....
I am so so sorry to hear this. Sometimes, I feel like as parents of SN kiddos, we should get "free passes" from all the other sh*t life can hand our way, but it doesn't work that way. I'm hopeful that the job hunt goes well and that the insurance stuff all happens quickly. Thinking of you!
ReplyDeleteI'm not sure in which state you reside, but you may want to see if your state offers the Deeming Waiver/TEFRA/Medicaid for special needs kids that isn't financially based. We have that for our daughter with CP and it is AMAZING. Might be something to look into. I hope you can find a good solution soon!
ReplyDeletemy wife told me your husband is out of work, please email me a contact number to jrutledge@corvalgroup.com (corporate safety manager)
ReplyDeleteThank you