Wednesday, July 1, 2015

Lifeline

I was going through some really old files that I haven't seen in a long time and found something that I’d written but never shared.  I don’t remember exactly when I wrote it, but wow, it brought me way back.  If I had to guess when it was written, I'd say it was seven or eight years ago.  

At the time, I was in the early stages of understanding what sort of options we had for Ronan's education and for his medical needs.  After reading an article, a website, or a book that I found useful, I’d share what I was learning with others. I’m still sharing and offering help to others today.  

Every day is a good day to learn.  Every day will always be a good day to help someone else.

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Lifeline

There's a saying, “When you know one person with autism, you know one person.”  I’m always hoping someone will add “…and…” with more information at the end of that sentence!  

The more I think of that sentence, the more questions I ask:

What does that mean?
Why won't you tell me anything else?
Where can I go to get help?
Who should I trust?
How long is this going to last?

Over the years of trying to find the right path to walk with my son’s particular issues, I’ve read many publications and webpages.  I’ve read about topics such as autism, mito disease, vaccine injury, communication disorders, educational therapies and biomedical interventions.  I always look for the most current scientific news.  I compare it with past trends and take time to always read blogs to get a parents’ perspective on things.  

I haven’t found all the answers to help me understand everything that affects my son, Ronan, but I have gathered an incredible stack of books for my personal library, saved webpages in my favorites on my computer and collected a few business cards of professionals who I can call or email if ever I need their assistance.

A small smaple of the books
you'll find on my bookshelf.
With all the reading and asking that I have done to help me understand Ronan’s needs better, I make it a point to share that information with local families.  It isn’t always easy talking about certain things, but I know that I can openly share my thoughts, worries and findings without judgment.  I wouldn’t be as brave as I am in speaking up if not for the parents who have walked before me.  These parents may not realize how much they have helped, but they’ve taught me where to research, who to trust, what to expect and how to manage all of the above.  They have become my lifeline.  Without their guidance, I would be lost.  So I’ve made it a point to pay it forward with telling our story with the hope that others can be aware of autism warning flags, of potential treatment options, of helpful support groups and of useful resources. 

I wouldn’t be where I am today without other families and their actions.  They have raised their voices and made a difference.  They have established support groups and welcomed me in.  They have opened their hand to hold mine even when mine trembles. 

Until we can all find the answers and the peace we need to feel on our individual journeys, I know that I’ll continue to depend on the brave warrior parents who’ve created a path for me.  

As I find my footing on my path, I hope to offer valuable information to new parents as well as offer bits of hope within my community.  

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Some things haven't changed since I wrote that.  I'm still reading.  I'm still learning.  I'm still sharing.  And I'm still holding onto hope.  If I had to add anything to it, I'd add a list of resources and places new parents can go for help.   

* I'd suggest they check their local school district to see if a special needs parent group exists.  If one does, I'd tell them to ask if there is also a parent resource center - some host a small library and employ a contact person who can provide names and numbers of surrounding agencies -- not just for autism, but for a host of other special needs/special education areas as well.

* I'd ask them to find out if other support groups exists.  Some parents create their own groups tailored to a specific diagnosis or treatment plan.  Groups may meet monthly or quarterly or provide online support groups.  They may schedule coffee talks, play dates, material/equipment swaps, or generate a local resource list with recommendations for local doctors, therapist, and special needs-friendly businesses.  

* I'd offer a list of some of the national autism groups too like National Autism Association, Talk About Curing Autism, and Generation Rescue.  I'd suggest they take time to devour those sites and check out their resource pages, their upcoming events, their grants, and how to register for their parent-to-parent support.  I'd recommend that new parents also take a peek at which groups and companies the national organizations support so they can check out their websites for more information, too.    

* I'd also encourage new parents to inquire if their Church or place of worship provides spiritual support.  Some Churches have unique ministries already established while other Churches need input from their parishoners to know that they need to create an environment and program for special needs children and adults.

* I'd also recommend that mom and dad remember to take time for themselves.  As parents, many of us put our kids first.  We can do that.  That is admirable, but we must never forget to take care of our spouses nor forget to take care of ourselves.  

So, make a list.  
Prioritize your goals.  
Determine what you need.
Decide what to do first.  
And do it.  

xo, Cat


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