Lifeline

By Cathy Jameson

I was going through some really old files that I haven’t seen in a really long time and found something that I’d written that, wow, brought me way back.  At the time, it still felt like I was in the early stages of understanding what sort of options we had for Ronan’s education and for his medical needs.  Back then, 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.  That’s because every day is a good day to learn.  Every day will also always be a good day to help someone else.  So, here’s that really old file, with some new edits, for today’s post. 

Lifeline

There’s a saying that goes something like this, When you know one person with autism, you know one person with autism.  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 want to ask:

What does that mean?
Why won’t you complete that sentence for me?

Where can I go to get help?

Whom 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, autoimmune disease, mitochondrial dysfunction, vaccine injury, communication disorders, educational therapies and biomedical interventions.  When I would come across those topics, I always looked for the most current scientific news about them.  I compared that news with past trends and then took time to read blogs so as to get a parents’ perspective on things.  Parent perspective, I discovered, is always important to consider.

I haven’t found all the answers to help me understand everything that affected my son, Ronan, but I have gathered an incredible stack of books for my personal library.  I have tons of saved webpages in my files on my computer, and have also collected several business cards of professionals whom I can call or email when I need their assistance.

With all the reading and asking that I have done to help me understand my child’s needs better, I made it a point to share that information with local families.  It isn’t always easy talking about certain things, but with them I can openly share my thoughts, my worries and my findings without judgment.  I wouldn’t be as brave as I am in speaking up now if not for the parents who walked before me though.  These parents may not realize how much they have helped a mom like me, but they’ve taught me where to research and whom to trust.  They also gave me a sneak peek into what to expect and gave tips on how to manage all of the above.  Those parents have become my lifeline.  Without their guidance, I would be lost.  So I’ve made it a point over the years to pay it forward with telling our story.  I do that with the hope that others can be aware of autism warning flags, of potential treatment options, and of finding helpful support groups and useful resources.

I wouldn’t be where I am today without other families and their actions.  They have raised their voices and made a great difference.  They have established groups, business and websites and have welcomed me in with open arms.  They quickly reached out their hand to hold mine even when mine trembles. 

Until we can all find the answers, and the peace we need to on our personal 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, I hope to confidently offer valuable information to new parents as well as offer bits of hope within my community.  

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 that original writing file, I’d add a list of resources and places new parents can go for help.  

I might ask them…
* to check the local school district to see if a special needs parent group exists.  If one does, ask if there is also a parent resource center – some will house 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 topics as well.

* to find out if other support groups for parents exist.  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.  

* to check out some of the national autism groups, too, like the National Autism Association and The Autism Community in Action.   I’d suggest they take time to devour those websites checking out their list of resources, their upcoming events, their grants, and to follow their pages for 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 other websites for more information.  I’d share that going to a conference, like the AutismOne conference, might be a good idea, especially for the moms and dads of the newly diagnosed. 

* to inquire if their church or place of worship provides spiritual support.  Some churches have unique ministries already established.  Other churches need input from their parishioners to know that an environment and program for special needs children and adults is desired.

* to remember to take time for themselves.  As parents, many of us put our kids first.  We should do that!  While that is admirable, we must never forget to take care ourselves.  If we face burnout, it can have a disastrous effect on the rest of the family—on our spouses and our other children.  I know it can be a monumental tasks, but we must never forget to take care of ourselves.

Today was a good day to share some old thoughts.  It was a good day to hope through some of the chaos that life brings my way, too. 

If you’re new to our community, we’re glad you found us.  Know that you’re not alone in the pursuit to find answers or to create something better for your child.  We’ve been there.  We’ve done that…and are still doing that.  We’re here to help you make that first step, to be a lifeline, and to share some resources to with you. 

So, make a list.  

Prioritize your goals.  

Determine what you need.

Decide what to do first.  

And do it.  

Cathy Jameson is a Contributing Editor for Age of Autism.

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