Several days ago a friend of mine posted on Facebook about her journey with her Autistic child. With her permission I am posting her journey here for others to read and hopefully get a better understand of what some families with Autistic children go through.
So, there is so much more. And we are only three years into this journey, so mine is the perspective of a novice, but for the last day of autism awareness month, I am presenting some things of which I am now aware.
Seven things I have learned since having a child with autism:
1) The world is not kind and it is not just.
But there are many people trying to change that and when I see they are doing that FOR MY kid I am humbled. If they can do a little, sometimes a lot, for children who are not their own, I know I can keep doing more.
2) My kids are miracles.
There is nothing romantic about raising a child with a neurological disorder. But watching any child grow and learn is miraculous and that is just as true raising an autistic child as it is for a typically developing one. But attitude matters. And a disciplined attitude can change everything. If I LOOK for his success and open my ears for a new word, a different sound, a more pronounced syllable, I will begin to hear them.
3) Autistic kids are smart. And they can hear you!
He may not speak but he understands everything. And when I say everything, I mean everything. Who knows what he is paying attention to and not in any given moment; but he has the capacity to understand our words and their meanings. He gets upset when we or others speak about him instead of to him. He gets sad when he suspects we are disappointed. Respect his dignity by not underestimating his intelligence. Do that for all kids, in fact.
4) Autism is pervasive.
It isn't just that my child doesn't talk and has funny repetitive behaviors. Autism is a syndrome and as it is pervasive it impacts his entire system, including his digestion. Digestive issues and autism have a 30 percent overlap. (There are other overlaps too, most notably epilepsy). But our issue, now, is the gut. Many families choose to try experimental diets for their children to help them feel better. Be patient with these families as they navigate, with much trial and error, this new world. The are not trying to "cure" their kids with strange diets, the are trying to help their children feel better.
5) Autism is expensive.
Insurance doesn't necessarily cover much, if any, of the therapies recommended for autism. And one family may get lucky while another does not. An additional challenge for many families is the reduction in income when one parent needs to reduce or eliminate a job in order to meet the hands on needs of their special needs child. For families who do have more resources, they are quickly dedicated to supplemental services for speech, behavior, occupational and physical therapies. There are often, if not usually, medical issues possibly related to the autism diagnosis. Our children have tremendous potential to be fully integrated and participatory in society IF they receive the intervention they need. Many families you know with children on the spectrum have depleted their savings accounts and are in debt; and others just wish they had the savings to deplete to just give their child his or her best chance.
6) Not all autistic children are treated equally.
Not all autistics' needs are even recognized, let alone met. Some parents have to spend thousands of dollars on lawyers, advocates and annual testing just to get the minimum level of services required by law. Some school districts bully parents of special needs students figuring they will be worn down and stop fighting. Some districts accomplish this by hiring specialized law firms just to prevent an increase in spending by challenging each and every request for services. School districts are bullied themselves by spending watchers that single out special education budgets, and sometimes single out individual students. Whether a parent is dealing well with his or her child's diagnosis depends greatly on whether that parent has allies or adversaries in the school district. Whether he or she does is mostly a matter of luck and can be dramatically different by region, state and even town. Children whose parents don't have the money to hire a lawyer are at risk for being disregarded.
7) It's a huge job.
The day-to-day reality of parenting an autistic child is often marked by fatigue and sleep deprivation. Often it is physically difficult. Despite the daily challenges, these parents must always be looking ahead. Issues change, needs change and the medical and educational resources available to a four or five year old may be exceptional but not so great for a fourth grader. Many of our children need a "shadow" or paraprofessional long after the school district is able, willing or required to provide one. Parents must be strong to advocate for their children when things get more complex. Some of us are dealing with dual diagnoses with a child who is far behind in some areas of development but gifted in others. One challenge is to not move too fast ahead but remain realistic about the challenges we must face to advocate best for our kids. If we have the means (which not all of us do) we still must carefully do the cost-benefit analysis between saving money for future needs or front-loading our resources to intervene now.
No comments:
Post a Comment