Monday, April 30, 2007

Are we Alone in the Universe

Maria Lujan (someday I'll learn how to to the 'acentos sobre'!) got me on a thought and I thought I'd try to expand on it. She put as part of a comment on 'Crisis of Opportunity' :

and I feel as alone as in the beginning, 3.5 years ago- except by very few
exceptions-, in the understanding of what is advocacy for my son

I guess what bothers me about the whole advocacy situation is that 'aloneness' you mention. We recognized the symptoms in Liv, told the doctor and the doctor sort of told us we should wait, it's some kind of phase. So we were alone until we finally found someone to agree there was something serious going on with our little girl. But after that we found ourselves alone again to try and figure out what to do, with little more than a pamphlet and a prayer.

I remember distinctly the day Linda called me up at work and said "Do you know NJ has some kind of program that will PAY for her therapies!" Gee, you'd think that would be one of the FIRST things they'd tell you! Before that, we were trying to figure out how we were going to scrape together $20,000 to $50,000 to finance the 30 hours a week of ABA that the pediatric neurologist recommended. Wow, did we feel al0ne before that!

Once you get the therapies, you are alone again to figure out what your child should get. Speech, OT, ABA. Geez just finding out what OT WAS was a challenge. For the most part, you still feel that there is a certain level of we and they between you and your caseworker, so your isolation does not end.

When Early Intervention ends and you're thrown to the mercies of your township, again, you are on one side: the ignorant, ill advised, ISOLATED parent. You're fighting for the mental life of your child and you have to make sure you don't say words like 'I want' (what don't they just make you say 'mother may I', make it like a game!). Unless you've done your homework and/or you've hired an advocate, there's not much on your side. It's very hard to know whether you succeeded or failed, because there's no one to benchmark from, no one in your exact circumstances.

Let's take a break from this isolation talk and say a big THANK GOD for the internet. All these blogs and discussion boards made us realize that despite our apparent isolation, we had literally hundreds if not thousands who were there, are there or will be where we were in the near future. I'm convinced I would have gone off the deep end without this outlet (and inlet) called the internet community.

Despite all that virtual support we are still in this advocacy battle on our own for the most part. I don't know about you, but I feel uncomfortable talking to parents within my district about services. I feel it's like talking to coworkers about salary, it's almost taboo.

I almost feel like even within the household we are alone in our advocacy. Linda and I are so busy doing our things for Liv, Grace and the other three that we sometimes don't get to talk about goals, details of therapies and fears of what can happen.

Each person is their own island it is said, I guess dealing with autism puts that island further out in the ocean...or the universe.

1 comment:

María Luján said...

Hi livsparent
Do not worry about accents.:)

I agree so much with you. In our case, all the overall process was very shocking. From the awful presentation of the neurologist of the autism in our son (Autism=Hell, Family´s life is ending, drugs to control behavior, get the child to a center) to the fight to learn about his several medical issues ( testing, diagnosis and treatment), every step was a "parental team of two against the world". We were convinced to do "the right things" and we walked a very solitaire road to know what were the right questions to do and what was the meaning of "the rights things" to do at several levels.
Also this feeling of being alone is something physical, such as being alone in the universe as you say. The relatives are supportive- mainly my mother- but it is very difficult for them to understand every aspect of the sensorial, emotional or educational aspects of our son.School-kinder- do their best- and they have been wonderful given the circunstances- but they do not know about the challenges of autism. In this journey, only special teachers have been more close to us. It has been strange how people I did not know 1.5 years ago knew so much about my son´s educational needs. But my son has also other kind of needs I must consider with my husband.
There are as many elections as families. It is very difficult to talk about how you manage the services ( therapies, education, medical) with other parents, because every parent has his/her own view of autism. Many consider that what they were told by the neurologist is the truth. Many are struggling with the acceptation step. And the financial aspects are very stressful because our medical insurance system is very burocratic.
I only talk about my elections with one close friend, that is the mom of an autistic child, also and lives in my city or by mail with other parents doing biomed in other cities of my country.
THANK GOD by the Internet, indeed. In my country there is no possibility to interact with autstic adults in advocacy or other parents doing biomed with the kind of approach we are doing (only 2/3 families in my city and some others-1/2- in other cities of my country).
I understand you very well.but I also consider that Internet has given us the possibility to know that we are not "so" alone in our universe and our thinking.
Thank you (very much) for sharing your thoughts on this very personal aspect.