Ed note: What follows is, as the title implies, long. And meandering. Somewhere in the middle it takes a sharp turn and ends up in an entirely different place than where it started. I did what I could to rein it back in, but I’m not guaranteeing success. I’m not even sure it’s entirely coherent, but I don’t have time to proofread it. So just remember, if you find yourself scratching your head along the way, you were warned. Good luck.
I love the Internet. I love the social media and the various forums that we have for finding one another out here in the ether. So often they feel like a lifeline.
I love the blogs, the web pages, the group resource sites and e-mail lists. I love the connection.
But sometimes it’s just too much. I simply have to shut it down before it gets too big, too sad, too unmanageable and I can no longer handle the nearly constant stream of comments, desperate posts and pleas for help.
I don’t know how to filter them. I just don’t have the gene. Instead, I feel this overwhelming sense of responsibility to read every one of them. I take in the stories of isolation, frustration, loneliness, fear. God, you can always smell the fear.
Have you ever read the Autism Speaks Facebook Page? People ‘sign’ the wall all day long. The emotion is palpable. They are desperate for help, validation, connection, hope. EVERY SINGLE DAY there’s a crop of new parents.
“Please help. My son was diagnosed with PDD-NOS today. I love him so much and I don’t know what to do.”
“My son is eighteen and has autism. I’ve been fighting for two years to get him into a group home. I can’t afford an attorney. I’m a single mom. Please pray for us.”
“My son has been hurting himself again. He tries so hard to keep it together but he can’t. We need help.”
Every single one of them breaks my heart. I want to reach out – to do something to help them help their babies.
Yes, sometimes it’s just too much.
And the differences in the care these kids are getting? It’s almost surreal. Reading the AS wall or any of the other national forums, one immediately sees the dramatically different levels of service from state to state, zip code to zip code, doctor to doctor, school to school, classroom to classroom. From one parent to another they try to figure out what they must be doing ‘wrong’ because they can’t seem to get their kid the same kind of help that someone else is getting.
Autism doesn’t come with a handbook. Doctors issue a diagnosis – Congratulations! You’ve just won a life-long neurological disorder!, then send parents to their local schools and say, ‘Have at it.’ School districts scramble. Money is scarce. They hobble together plans. Parents with time, money, and resources who happen to live in the ‘right’ places are able to get what their kids need. Even then, it becomes a nearly full-time job – creating, negotiating, monitoring.
But far, far more often we find the most vulnerable children in schools being babysat, guarded, managed and warehoused rather than taught because no one in their world has a clue where to begin.
It’s happening EVERYWHERE.
There are teachers and professionals with no resources who are begging, pleading for help from people like me – a mom with a blog – because we’re the only ones who are visible. The only ones they can find to turn to for advice, even if we are desperately unqualified to tender it.
This one a couple of days ago nearly did me in. An obviously loving and desperately concerned teacher wrote the following ..
As a teacher of students with autism there are so many things I need to understand about my students and parents. Currently, I have a student who is struggling with behavior in school and the parents feel sure the school is to blame for the issue.
If you could help me in any way I would be so indebted. My little guy tantrums when any demands are placed on him that he does not wish to comply with causing disruptions in learning for the classroom.
He is smart and engaging, but missing so many things because of behavior. The parents are loving and very supportive but in denial about the extent of his behavior. He is at risk of being suspended from school and they finally realize we must do something to help this child.
He has been diagnosed autistic, sees a psychologist, is medicated (prozac and risperdone), has hyperlexia but school is a battleground. The parents report the behavior at home is just as bad. Any advice to me as his teacher would be helpful.
Also, I am an itinerant teacher who travels to seven other schools so I am not with him all day. He is in a general education kindergarten with about 19 others staffed with a teacher and aide. He does not receive any other special ed services other than me which is once/week for 45 minutes.
Thank you for your blog and the invaluable insight you have provided me into the workings of the family with such a special child.
God bless this woman for looking for help. Her heart is so obviously in the right place. You can’t miss her desperation. She wants to do right by this child.
But by God she is apparently the sole support in school to a child with autism. She works with him for FORTY-FIVE MINUTES A WEEK. A WEEK. And obviously has no appropriate resources because she’s coming to ME – me, a MOM WHO WRITES A BLOG to ask for help with a child’s behavior. This terrifies me.
This child is five years-old. He’s on Prozac and Risperdone, has an autism diagnosis, and his ENTIRE SUPPORT SYSTEM is a woman who spends FORTY-FIVE MINUTES A WEEK with him and despite her valiant effort to learn, obviously does not have the tools she needs to help him.
I may write posts in forty-five minutes, but it took me three days to formulate my response to this teacher. I didn’t want to be dismissive. I wanted her to know how grateful I was that she was looking for a way to help this child. But, holy hell, she needs to get this kid some REAL help. Here’s what I wrote.
This little boy is very lucky to have someone seeking information on his behalf. Unfortunately, I think it would be terribly irresponsible of me to dispense advice knowing nothing about him or his situation.
It sounds as though he desperately needs far more services – beginning with an inclusion specialist or case manager working with a BCBA (a board certified behavior analyst) who can work with his teachers to create an appropriate program for him.
Many of our kids tantrum when they don’t have another way to communicate distress. It’s vital to create structure and predictability for our kids – visual schedules telling them what to expect can dramatically ease the challenge of transitioning from one activity to another and help them understand what’s expected of them.
It sounds like the best thing you can do is to alert both his parents and the special education administrators in your district that the child desperately needs far more support in the classroom than he’s getting.
Again, on behalf of all of our families, I thank you for trying to help and wish you all the best as you work to serve this child appropriately.
Children who could so easily have a fighting chance at independence are watching time evaporate as politicians posture and pose and schools throw them into classrooms they can’t possibly handle with untrained aides who have no idea how to support them.
This woman visits this child ONCE A WEEK FOR FORTY-FIVE MINUTES. And anyone is surprised that his behavior is unmanageable? Really?
As a society, the choice is ours – support these children now and help them to, in many cases, become productive members of their community later, or create a generation of dependents who will have no hope of contributing to society or supporting themselves as adults.
Until we figure it out, the river of desperation and fear will keep flowing. The comments and posts and pleas for help will keep coming. And sometimes, for this mom, it will just be too much to bear.