Wednesday, August 7, 2013

Better


Thank you for all who contacted me personally, emails and comments were much appreciated.
I know I am not alone in this battle of rights and treatments for Autism for our children.  It is a hard road to travel and just hearing other moms and their stories really does help keep the strength to fight.
My boy has come out of his dark place and is the happy full of life boy I knew.  It is the scariest thing to see your child slip away and not know if he will return.
It is a humbling experience and you enjoy all the time, no matter how hard some days may get, that they are happy and here in full.
We are still jumping through so many hoops and doors are closed in our faces when trying to still seek services.  In a moment of I don't know where else to turn, I tweeted Jenny McCarthy for help.  She actually retweeted my plea and I am so hoping that we are connected with someone out there that will care to listen.  We have paid so much money to high end doctors, therapist and still we are getting no where.  It puts us on another list, or okay try this number or we will get back to you. All we want is a professional ABA therapist to join our family and help our boy in school.  It doesn't seem that hard but yet we live in the worst state that offers educated ABA professionals. There just aren't enough practicing here to go around. 
It is all about name dropping and who ya know.  We have been put on waiting lists to get to a list for appointments with doctors, but we have found that if you drop the right name, all the sudden we are moved to the top of the real list and instantly get in to see the doctor.  It is unfair to all of the families dealing with this.  Once you are moved to the top you feel horrible for the person you knocked off. Just because we know a name makes us more important???? How wrong is this?
Today will be another day of phone calls to government programs and long wait times.  I would love to just stop for one day and go shopping and lose myself.  But taking just one day off could prove crucial.  We are running out of time.  They say you have until the child is 5 to really get the help you need. My child turns 5 in less than 4 months.  And I know to take time for ourselves is also very important, but not having family or friends here to jump over and babysit, and we have also been told we are not eligible for respite because we have not been in the program long enough, UGH!! it is not easy to take a day for us to regain strength.
I am writing this and will tweet it out for hope that someone will come to help eventually.
If you have friends that have special needs children, offer to help.  It could do so much good, more than you could ever know for that family.

6 comments:

Laurie said...

my heart breaks for you, we just met today with another specialist and respite and school is being organized, a taxi will take gracie to and from school and she will receive, we were told it would be long waits as well, 12 to 28 months for a phyc evaluation but she has her diagnosis and she will be getting the help she needs, I hope things start happening sooner for you, I hope everything starts soon for our gracie as well, like you said such a amall window of tie, its crucial, I still don't understand how long you are in the program matters, for respite, our daughter is eligible now, it must be different in Canada, still long wait times though, thats the same everywhere I think.I wish there was something we could do to help, I really do, I wish we lived closer,

Gail Thayer said...

Hi Amy,
I'm so glad that B is feeling better and back to his old self!
In many ways your post makes me sooooo angry!!!!!
Why on earth should it be so hard for parents to find the help they need these days with a diagnosis of autism. It's not like it's uncommon!
My heart goes out to you.....hang in there. Maybe some traveling will be in your future to get the help you need for your sweet son.....so sorry you're going through this.

Gail Thayer said...

Meant to add that I wish we lived closer to each other, I'd be there in a heartbeat to give you the break that you need so badly!

Julie said...

Oh Amy ... Im with Gail above - I so wished I lived close & could pop over & give you some respite & also a hug :-) But I am so glad you have your boy back as I am sure that is such a relief. It makes me angry why you have to jump thru all these hoops to get some sort of help - it seems so unjust & wrong. Sending hugs your way my friend x0x0

Sue said...

I've been reading your posts and thinking of you. There is nothing in this world more important than our children and for me, my grandchildren as well. We will go to end of the earth and back to try and help in anyway we can. I just wanted you to know that I think of you and your family often. I hope life will be kinder to you all very soon!

Take care my friend,
Sue

Rhonda said...

I ditto Gail's comment, Amy. I truly wish I lived closer to help you and Rudy. It does make a difference when family and friends are there.

Sending my love and prayers your way.