200 Hours in Emergency Room For Family of Autistic Boy
Autism Deserves Its Diagnosis Status

Back to the Future With (or Without) Autism

1981_Delorean_DMC12By Cathy Jameson

Several weeks ago, I made an appointment for October 21st.  So that I wouldn’t forget that appointment, I opened the calendar app on my phone to enter the information.  I could see that I had another event scheduled for that day already.  I thought, Huh? I don’t remember making an appointment. 

I didn’t. 

Doc Brown and Marty McFly did. 

Cj Marty McFly

I laughed. 

Back to the Future has been a family favorite since it was on the big screen in 1985.  I was still in high school then.  Clueless about autism, vaccines, and parenting a child with special needs, I had other thoughts about the future.  I imagined I’d be traveling, exploring, and surrounding myself with friends.  Fast forward to when Marty McFly went to the future (which was actually 2015, the calendar app celebrates the anniversary of that event) and I am much less clueless about autism, vaccines, and parenting Ronan. 

I know more than a thing or two about autism now.  I am sought out by new moms for my vaccine knowledge now, and I’ve gotten pretty good at keeping Ronan happy and healthy, too.  Life’s been very different and a little more frustrating than I imagined it would be, but it’s also been much more enlightening and surprisingly rewarding than I realized it could be.  That’s because…

I never understood how strong a mother’s bond could be until I became a mother.

I never knew what parenting entailed until my own kids came along. 

I never knew how important mother’s instinct was until I didn’t use mine.

I never knew what I needed to know about my kids’ health until irreversible damage was done to their health.

I never knew how to use my voice until my son lost his.

I never worried about the future until my child’s future was compromised.

Some days, when I take a mental sneak peek into the future, I see Ronan as fully healed.  Seizures.  Sensory problems.  Cognitive delays.  Language struggles.  Those are all gone.  The many medical issues that currently plague his growth and development are replaced.  Instead of being non-verbal, he’s chatty.  Instead of dealing with the exhaustion from a mito crash, he’s playing basketball with friends.  Instead of struggling with simple tasks, he’s tinkering in the shop rebuilding motorcycles with his Dad. 

I like thinking about those versions because looking towards Ronan’s future can be somewhat daunting.  If he follows the path he’s on now, as much as I’d like to always be hopeful about the future, I know that life may be peppered with some struggles, with some complications, and with some disappointments.  Those disappointments are never - and will never be - directed toward Ronan himself but toward the situation that brought on those awful seizures, those paralyzing sensory problems, those frustrating cognitive delays, and the on-going language struggles he deals with on a daily basis. 

Would I, if I could, go back and do things differently? 

Would I, if I could, go back and take it all away? 

Would I, if I could, prevent this future for another family?

Yes.  On all three counts, absolutely yes.  If I could change some of the past, I would.  If I could help change someone else’s future, I would to that, too. 

Cj Reliable Way

To go time traveling, either to the past or to the future, isn’t an option.  Some days, I actually think that isn’t a bad thing.  The events from the past led to making changes, good changes, for my entire family.  So while the past led to a future that I never dreamt I’d be living, I still do my best to find something positive, to find something hopeful, and to also be the light for those around me. 

This week, as I checked the phone calendar for some upcoming events we have to get to, I was reminded of that Back to the Future calendar entry and laughed again.  As long I find time to laugh, and as long as I let my light shine, it doesn’t matter which path I’m on.  I’ll keep my footing, I’ll find my way, and also I’ll remember to use Ronan as my guide.  Even with the many challenges his condition brings, he’s always been my glimmer of hope.  No matter where his future takes him, I’m happy knowing that we have the chance to go toward it together. 

Cathy Jameson is a Contributing Editor for Age of Autism.  

Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

Peggy Jaeger

And what of the preparations for the (likely Real) future?? Who is to takemour little, or big,,crappies if our time,,the life time, of the caretakers..? While this 24/7 struggle for their benefit goes on, shouldn't we also keep in sight and plan for that ..... unexpected future too..? Sad but true,,so many millions of affected and care givers is still daily dismal. I wonder where are our challenger knights to the powers keeping us in misery...? They also are being buried or ignored. I love my grandson dearly and rejoice in any improvements that show up in his behaviors or physical body but wonder where our dragon fighters are..? It's been since 1988, when AIDS issues about vaccines to help cure or alleviate were first adjusted to allow experimental drug use without the 20 year testing rate, that regressive Autism reared its ugly dragon demon head. I know research is going on somewhere in this world from the infrequent reports from communalised colleagues. Shouldn't we,,while fighting this misery on a personal level,,still keep writing our government representatives..?

I love you Cathy,,and can empathisize with your struggles and joys, my family goes thru the same, and your very important place of encouraging all care givers. Will you also encourage us to hound these government officials also on a 24/7 basis as ....a necessary part of this life of ours...? Grandma peg....

Gayle

Thank you Cathy for another inspiring post. You always help me to have the courage to keep going and caring for my special needs son no matter what happens. He had a grand mal seizure a few weeks ago and I was very depressed over it and wishing he didn't have epilepsy, as so many with autism do. We can all only pray for a better future for our children that will result in research finding a cure for their autism condition.

Mary Maxwell

Crikey, Cathy.
Crikey.

mr. washington

UCSD's Dr. Naviaux: Suramin Trial presentation

https://vimeo.com/239193768

cherry Misra

@Down the River- Thankyou for your beautiful comment. In my imaginary museum of autism, your simple and truthful words would be on a wall. I wonder, Is what enrages me the most the way the good and trusting people have been tricked and harmed.

Down the River

When I see my son's shining personality and character beyond all the disability I know what they did. We must remember that we were being told it was above all for our children's welfare. The people doing it may have been doing it out of ignorance but the real drive behind it was to sell products.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)