From a simple path to a road of hope
We all know that parents don’t get an instruction manual on how to be parents. We all want to know the secrets on how to raise a child so they can achieve their potential and how to interact with our child that builds confidence and character. All of us also know that no one goes into parenthood with all the answers - we learn slowly, year by year. From the pregnancy stage to interacting with the adult child, we all travel a road that leads to the future – to the next generation. The knowledge we attain is so vast that no book could possibly cover it all. Yet, when we need help we can search the Internet, pick up a book that specifically covers the topic or ask other parents questions on how they dealt with this or that. We make progress ever forward. It’s never a smooth, uneventful road, but it shouldn’t be a chore - like a dreaded homework assignment. It should be more like a rocky adventure. It is true what they say, that parenting is the hardest job one will ever have, but also the most rewarding.
So why should having a child on the spectrum be any different? As complex and challenging as it is (just ask any parent of a child with autism) it is still the most rewarding experience of our lives. The difference is that parents of autistic children learn skills that parents of neurotypical children never develop. That’s not an insult – just a fact of life.
The communication deficits alone challenge us to look deeper to decipher the facial clues and body gestures early on as it may be the only form of communication we have with our child for years. Looking deeper requires constant vigil and constant learning. For parents of adult children on the spectrum the road to understanding autism wasn’t even a walking path yet, let alone an actual road. When my son was diagnosed the prevalence of autism was rare - only 1:10,000. Knowing another parent with an autistic child just wasn’t possible. Almost all of us from that generation were given a bleak diagnosis of autism with a recommendation for institutionalizing our child. Some did, many of us did not. Regardless of the route we took long ago, each of us did what we thought was best at the time. Many of us went against the dogma of institutionalization and in doing so were able to envision a different landscape for our child’s future. This different perspective was better and slowly - a new path to a new destination began to emerge.
For those of us who decided to take upon ourselves the “burden” of our handicapped child, life was surely different than we expected, but never, ever, a “burden”. Without the books and without the resources of the Internet, we gained insights into autism that few professionals were even interested in. Things like empathy, flapping hands, lack of eye contact, the need for routines, echolalia, limited food choices, covering ears to block loud sounds, not responding to pain for either sickness or injury, were all dealt with intuitively as parents. To professionals these were symptoms. To us, these were everyday issues that led to greater discovery. Curiosity and love helped us to look beneath the symptoms in order to understand what our child was really dealing with. One by one we found the assumptions of what the professionals thought they meant were false. We found empathy had been there all along. The flapping of hands was actually an expression of emotion – not self stimulation. The difficulty with eye contact and the covering of ears around loud noises were due to sensory issues – not self absorption. Routines were not strange behaviors, but instead a way to diminish the chaos of the environment. Echolalia was just speech practice and limited food choices were not due to a picky-eater but a combination of taste, texture and color. It was not that a child could not feel pain – they couldn’t express pain. We, the parents of autistic children, found sensory issues and fear to be the basis of every behavior in autism long before professionals even decided it was worth looking into. Each of us became the autism expert for our own, uniquely different, child.
Sometimes we were successful and sometimes we were not, but we kept forging the way – without any awareness that we were doing so. None of us ever imagined a growing prevalence of autism, now somewhere thought to be1:99 to even as high as 1:65. As our children grew older the world moved on. The Internet eventually linked us all together. We found we were not alone anymore and we had plenty to share with the parents of newly diagnosed autistic children. Blogs and websites now provide help for others walking the same path. So many parents are now on the path that an actual road has begun to emerge. Where does this road go? The road goes to a future with better awareness, better treatments, and greater possibilities for our children to succeed in this world. Someday the road will be paved and easier to travel and it will be because the parents of each generation made it so. Each new generation will have a better map and will lay a stronger foundation.
As a parent who has been where many of you are now I feel I have much to share. Maybe some of it will help you, maybe it won’t, but here is my basic short-list to get you a little further down the road:
1. Read as much as you can from other parents. Some of what they experienced will be relevant and helpful. Some will be inspiring. All will confirm that you are not alone.
2. Read articles and stories written by adults on the spectrum. They are varied and enlightening. Each has a story to tell and no two will be exactly the same.
3. Know your own child’s behaviors and look deeper to find their meaning. Be the expert for your child. Discover the wonderful.
4. Share your insights with other parents. You can do this by writing your own blog, getting together with other parents whose child is in the same school, or possibly sharing with other parents at a support group. Parents new to the diagnosis especially need you. Reach out and support the next generation. Help them to get on the road.
5. Learn about the various medications, treatments and diets but use your own instincts and judgment about what is right for your child. Each child is different. These types of things only work for some – not all. Realize that you may find a better way that doesn’t require all of these. Be open to explore your own insights as a parent.
6. Be very active in the education of your child. Go to every IEP with a plan of your own. Be the expert. Teachers and therapists know general information only. You, on the other-hand, know the specifics about your child – you are your child’s only real expert. Pop in un-expectantly to observe. Keep educators on their toes. Be kind and push gently. If needed, push hard.
7. Share your awareness with those who do not have an autistic child. They need to learn about it from someone who knows – not from just the media.
8. Be a myth-buster. There are many myths out there about autism. The one that really irks me is the “world of their own” myth. My son is in my world and I am in his. He is not alone. He is not an alien. He is just different, not less.
Parents who have a child on the spectrum pushed for the research, the treatments, the educational rights and the awareness of autism that are out there now. Just as the parents of older adults helped to dispel the refrigerator-mother, I have taken up the calling to share my experiences and my insights as well. Each of us can extend hope to the next generation. We are the builders of a new road, toward a better future for our children.
I found this quote the other day that sums it up quite nicely;
"Hope is like a road in the country. There never was a road; but, when many people walk together, the road comes into existence." (NationalOrganization for Rare Disorders, Inc.)
Come. Take a walk with me. Try to envision a better future. Let’s continue to build this road together.