Monday, 7 March 2016

A Cause Near and Dear to My Heart- Please Read!!

If you are reading this, you either know and care about our family, or are affected by autism in your own daily life.  Either way, you have some personal knowledge about the affects that autism can have on a family.  I talk quite often about the day to day emotional struggles that we face- but the fact of the matter is that financial issues have just as much of an impact.  This is true for pretty much all autism families.  There are few other serious diagnoses out there that have treatments and therapies so significantly limited by a family's personal finances.  If our children had other medical diagnoses, or genetic disorders, they would qualify for services, and likely medicaid rather quickly.  With autism, Maryland has the "autism waiver", which offers a limited number of slots for special services provided to kids with autism- we have been on the wait list for approximately 6 years now.  When we first started on this journey, we felt so limited in what we could provide for these kiddos- our insurance covered 50 therapy visits A YEAR.  OT, PT and speech COMBINED.    We could take them to (in-network) developmental specialists and get them diagnosed 500 times a year (if we were nuts), but the treatments these specialists recommended were completely out of reach for us, and we are a two income family, albeit one with two children in need of services.  

I could spend this entry perseverating about the things we have not been able to do because of lack of funding- there is much that I could say, and have said on this issue.  But that's not where I am going with this.  

There are sources of help, sources of funding out there for our children.  About two years ago, such a source came into our lives and changed things for the better.  We became aware of Avergan Foundation  through the special needs preschool that Nathan was attending.  We were drowning in debt trying to pay for this program that our son needed.  There was of course little to no funding available for this type of program, and the cost of it would quite frankly make your head spin.  When it comes to your children?  Your son who is 3 and non verbal?  That hardly matters.  You want your child to function, to thrive, and will do just about anything to make that happen.

To put this in perspective, here is Nate, at age 5- for weeks this program worked with him on a "wish" his mama had for his 5th birthday.  I wanted him to blow out a candle.  This may sound frivolous to some, but these milestones that we as parents miss out on- they mean so much. 
And here is a mama's wish coming true....

It is true what they say, fighting so hard for these small accomplishments makes them mean even more.  Avergan helped fund Nathan's attendance at this program for nearly a year, while also funding his private speech sessions with a speech therapist who truly understands his needs...

After all they did to help support our family, I found myself volunteering at all of their events, wanting to be involved, wanting to give back.  So recently, in a moment of insanity, I joined the board.  As tied up as I am trying to provide the boys with what they need- at this point, I am proud to say that I think they kind of have it...we are in a good place service-wise.  There are many other families who are not.  And they need help.  They are where I was 5 years ago- and it's not a place anyone should have to stay in!

So here I am, a mama with (another) cause.

Avergan Foundation is having an event called "Art For Autism" on April 23rd to raise money for these families, and we need your help.  If you are an autism mom (or dad), we need your kiddo's art!  If you are a business owner, we need your sponsorship!  And if you are my friend, or family, or care for these children we are working for, we need you to come out to the event.  I will be posting more information as the date gets closer, but here is the link to the event

Please consider getting involved in whatever way you can- if I can find time, you can too!!!

And just look at these faces.....

Not trying to sway you, but you know, they are kinda cute ;-)

1 comment:

  1. Love reading about your family and what you stand for! Always good to know there are others out there fighting the good fight with us!