My advice to parents new to #autism

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I wanted to take a few minutes and say something to all the parents that are new to the #autism journey.  I’m not an expert by any stretch of the word, however, I have accumulated a great deal of experience over the past decade. 

One of the first things I can tell you is not to listen to everyone who tells you what to do.  I know that ironic, considering I offering advice but let me explain. 

Autism is profoundly different for every person that’s diagnosed.  This means that no two people with autism are exactly the same. 

I find that all too often, people forget this truly important autism fact. They will try to tell you what to do because it worked for them.  Maybe it will also work for you as well. However, what you are more likely to find is that what works for someone else’s child may not work for yours.



You have to learn to trust yourself.  You have to learn to do what you feel is best. 

You can take in all the advice you want, but at the end of the day, the decision remains yours to make. 

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Something I have noticed as well is that people tend to romanticize autism and make it out to be this amazing gift. While this can certainly be the case for some, it isn’t for others. 

The truth is that sometimes autism can be an absolute nightmare and people just don’t want to talk about that.  In my opinion, the only thing that not talking about it accomplishes, is creating confusion in the public arena and decention within the community itself.

Look, autism is different for every single person and family out there.  That’s not just my opinion that’s a fact. It would stand to reason that everyone’s experience with autism could be different as well. Right?? Right!!

Some families are more profoundly affected and like my family, will face a great deal of challenge on their journey. 

On the other side of the coin, some families will have far less challenge on their journey.  While their journey isn’t necessarily easy, it will be easier than others.

Something good to remember is that everyone’s experience is relative.  This means that two people can experience the exact same thing, differently.  This is so true when it comes to autism.

There will also be times when you feel like you’re going crazy. Trust me, I’ve been there.  In fact, I’m living downtown there  and have been for sometime. There’s nothing wrong with you. You’re tasked with a parenting situation that most other parents couldn’t even imagine.  Personally, I would think it weird if didn’t feel like you were going crazy from time to time.

You’re likely to feel a cornucopia of emotions. 

Guilt will likely be among the most difficult to bare.  Guilt is something that I have personally struggled with for years.

There may come a time when you may even live in the city of denial, especially in the beginning of your journey. It’s entirely possible that we’ll run into each other in the small town of resentment. I have been known to make an appearance in resentment from time to time.

That may sound scary and unpleasant. That’s because it can be scary and unpleasant.  This is life we’re talking about here, not some fairy tale with a guaranteed happy ending. Real life is messy and very often times unfair.

The only advice I can offer is that it’s perfectly okay if you feel one or more of these emotions. I mean, you’re only human right? I know I feel these emotions and more, quite often in fact.  I hear from other parents all the time about how they feel the very same way. 

I think what really matters is how you handle these feelings.  If you try to bury them and pretend they’re not there, you may find yourself in trouble.  Instead, I’ve chosen to embrace these feelings and let them teach me more about myself and my limitations.  It helps me to keep myself centered and not take on more than I can handle. 

Honestly, I could go on and on but let me just say this. 

You will be undergoing a journey that while difficult at times is rewarding in ways you can’t yet imagine.  Experiencing life with an autistic child can be truly amazing.  You will learn to see the world in ways most people never will.  You will find joy and happiness in the tiniest of things and never take anything for granted. 

You will celebrate victories and and be prouder than you ever thought possible.

One of the most amazing moments of my life was when I realized that my kids were the ones teaching me.  I mean, sure, I’m teaching them as well but they are teaching me to appreciate life in ways I might not have otherwise. 

If you read this blog, you know that our lives are extremely difficult.  Having said that, I’m happy. I’ve managed to find happiness in an otherwise overwhelming situation. We aren’t rich and so money is always a struggle but we somehow get by.  My kids are made happy by the little things in life.  They appreciate nature and see things in unique ways.  I absolutely love watching the way they work. 

The bottom line is that you’re a special needs parent to now.  You’re part of a group or community that is constantly growing, and growing in many different directions.

You will hear many things from many people.  There things will often conflict with each other.
It’s frustrating because so much of what people rely on as fact is really nothing more than opinion.

My advice to you is find a doctor you trust and therapist that knows what they’re doing and works well with both you and your child.  It also helps to connect with other parents and people with autism themselves, within the community who can offer advice based on their own personal experience and who understands what you are going through.

Never ever think that you are alone.  While you may be alone in your house, you’re not along in the world.  We are all here for you and want to help in any way that we can. 

If you visit Lost and Tired, you won’t find me trying to shove my opinions down anyone’s throat.  I simply share my personal experience that I have gained raising 3 boys on the autism spectrum.  Maybe something that I have done or shared here can be useful in your life, maybe not. You can at least learn from my mistakes, of which there are many.

If nothing else, you will find people who care and can empathize with you because they have been there themselves. 

Sometimes, just knowing you aren’t alone can help you make it through the day. Sometimes just making it through the day is a victory in and of itself.

Good luck and please remember you aren’t alone.

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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laurikhoda

@DominiqueGoh @reality_autism
You say it well, especially that for some of us, no one else can even imagine what we deal with…I applaud u

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laurikhoda

@DominiqueGoh @reality_autism
This blog is extremely informative for anyone who has a child diagnosed with #autism..totally factual, true