I have tried to answer the universal question about what happens to parents when they receive the diagnosis of autism for their children and why. There is the panic. There is the grief. There is the fear. With all due respect to the self-advocate community, you do not think about all the doctors, lawyers, scientists, captains of industry that they surmise have or had autism. What you think about is that very tiny little person who you brought into this world and how you are going to help them. And you have no idea what to do...This is when you find it really hard to breathe.
My mother tells me a story that when we were still trying to figure out how to help CM1, we had an idea about autism but it was not diagnosed "officially" yet, I turned to her and I began to cry. "How am I going to help my son? I don't have any school that will help him." (I don't remember this event at all. But then again, remembering things is what your-mama is for too.) Of course, we ended up moving out of NYC into the suburbs where we did find people who were not only willing to help, but they took it as their mission to educate my son. Our family was very lucky. Yes, that was almost twenty years ago.
In many ways today's world is so much better. Autism and especially aspergers is a common theme in movies and television. Information is readily available on the Internet. I would say that too much information is available at times and the problem today is to know what to weed through and what to try to help your child.
But in the end I truly believe that no matter how much is available and how open society is about this disability (at least for children. Helping adult autistics and understanding how to see the person and to the disability is society's newest challenge) parents still feel alot of what I felt decades ago..and one more thing I felt too....was guilt. Alot alot alot of guilt.
Is it rational to feel guilt? Absolutely not. Science now tells us that in fact there is really nothing we could have done to prevent our children from having autism. It is genetic and unless you have a genetic test and then abort your baby, that child with this combination of genes, will tend to end up with this disability. No I do not believe, and I never did believe, that vaccines cause autism unless your child has mitochondrial disease (which is exceedingly rare). You need to remember my boys came of age before all these massive dose vaccines and looking back at videos you can see their autism from the very beginning, especially with CM1.
I think that this "guilt" more than anything else is what causes us parents, both mother and father, to lose themselves in their child's diagnosis. The reality is that, if you work outside the home, and have the need to live outside the world of autism for even a few hours a day (most importantly to earn money so you can provide the necessities of life) it can help you break this cycle. But then again, as the parent you feel guilty about not feeling guilty that you are happy to think of something other than autism and your child.
You know what, it really is not only OK to think of something other than autism, it is necessary for your own sanity. For your own physical health. For your own happiness and yes, my dear readers, you are entitled to be happy. Being happy does not mean you shirk your duty to your child. It doesn't mean you don't love your child. It doesn't mean that you are not a good or even great parent. What it means is that even after your child is diagnosed with autism you are still a human being and are allowed to want what every other human being wants...namely a hot shower and some time to drink a cup of coffee and read a newspaper/Internet in the morning....
It is so important that you find some way to exorcise that guilt from your soul. Don't let it drag you down. Don't let it overtake your personality. Don't let it refashion who you truly happen to be. I did not say this is easy to do. It wasn't easy for me. Took me a long time to figure this all out.
Now on the other hand I am not telling you to go out and follow your favorite rock band either. What I am trying to convey is that if you liked to needlepoint before your child was diagnosed, still needlepoint. If you liked to garden then continue to garden. If you were fascinated with cars and loved to rebuild motors, still do that. If you loved to read espionage, romance, travel, cooking books (etc), anything that doesn't revolve around autism, then still do. Don't give up everything that you are. It won't help your child if you forget about you.
Heck if you loved to go to amusement parks or out to dinner once in awhile, do that. Get some respite help. Get a relative to sit. Hire a babysitter. Your children will survive, believe me.
One more thing and I think very important..if you need help to accomplish this goal of remembering who you are..then get the help. Find a therapist to talk to. Let them guide you through the process. I did that for awhile in the very beginning. But you know what really helped me in my self-realization? My spouse. He is my best friend. He never let me forget that I too was a human being and I never let him forget that he was one also. If you are single, then a best girl/male friend should do the same. Or a parent. Or a sibling. Or members of a support group (on social media or in real life).
Find that little corner in your day to acknowledge YOU, sans guilt. You are entitled. Really you are.
By the way one very important item to remember. If your child is newly diagnosed do NOT read anything by Jenny McCarthy. Apparently she has decided that we, who think that the biomed industry is made up of charlatans (especially her Generation Rescue), apparently revel in the attention we get from our child's diagnosis of autism. We are Victim-parents instead of warrior-parents. Apparently only those who worship at her trough are the real fighters for their children and she is the new autism-Jesus.
Someone really needs to tell that egomaniacal self-important, self-interested coochie-girl that before she accuses someone else of thinking only of themselves she needs to look in her nudie-Playboy-mirror. She is no spokesperson for the autism community. In my opinion she is now becoming simply an embarrassment to herself.
Another point: Many of you will be upset that your child will need to be on meds for their entire life. If it helps your child to function and reduces their anxiety, allows them to focus, stops their seizures, stops self-injurious behavior and provides them with the ability to allow their true personalities to shine through..so what? Modern medicine is a God-send in my book. Without it I don't know where my boys would be. But I know one thing, if they couldn't focus, couldn't function because of anxiety, would continually hurt themselves when they got frustrated and constantly had seizures, they certainly wouldn't be in college planning their futures....
Therapy, meds, healthy diet, exercise and support, all go hand-in-hand for your children. Don't let anyone tell you that it doesn't and don't let anyone tell you that you are inadequate parent because you don't follow their regime or their "crap." Think for yourself..find what works for you and yours.
Begin with this book:
Thinking Person's Guide to Autism...
Read my review of the book HERE.
Until next time,