too much – a long, meandering rant

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.

 

 

 

 

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50 thoughts on “too much – a long, meandering rant

  1. It’s interesting you would post this…because a few days ago I was thinking of contacting you because I didn’t know who else to turn to about an issue, and I know you are well-connected and quite knowledgeable (it’s about whether the school can force him to start kindergarten young). You hit the nail on the head. They give the dx and then it’s like you’re sent out into this great abyss and have to try to navigate an ocean with a rowboat. Thank you for doing your part to help. I wish there were easy answers here…I have to lean on my faith or I would often feel overwhelmed and discouraged.

  2. Wow, what an amazing teacher. To think she is sitting there searching the internet, searching everywhere for a way to help this child. I hope the school board has the resources.

  3. hitting close to the heart, you know. We want to change the world but you can’t be there for everyone all the time. With every word you write, you make this a better place for our kids. And that’s already enough. You can’t take on the world’s hurt too. Sending you good thoughts and hope for a peaceful weekend.

  4. Wow. We are lucky enough to be in one of those right zip codes and I sometimes forget the struggles others are having until I read the posts you describe. The imbalance is mind boggling. But what can we do to help change that imbalance? As you write 45 minutes A WEEK without other services does not even make sense. How can they expect behavior to be okay when they are not doing the right things during the day to keep that child engaged and on track?

    It scares me more when the educators themselves do not have the resources. They are the ones we often turn to for advice, if they have no answers where else can parents turn? Some districts count on the fact that parents cannot afford the fight.

    We need to keep writing to keep the fight in the public’s eye. We need to let the world learn more about the real faces of autism. if we do it together, we can bear it together.

  5. Why didn’t you also tell her about IDEA and the rights that child has under the law? Like a right to a full FBA. Clearly districts love to overlook the actual legal rights of the kids and unless the parents and this teacher fully understand the laws that protect the kids she can ask for everything you mentioned to her and never get anywhere. Referring her to Wright’s Law would also be helpful.

    I agree. It is unfortuante and scary that people don’t seek an attorney or a well trained advocate rather than run around on the internet asking parents. They will never get any services for their child by proceeding in that manner.

    • most people in this situation can afford neither an attorney nor an advocate. my point is that they should not need either one to get their children’s needs met.

  6. I have said for years now, that this country does not value women and children AT ALL. Every day a women/child is abused/victimized and the perpertrator is allowed to go free and not suffer the consequences, while the women/child suffers the effects for forever. How does this relate to our kiddos not receiving appropriate education? It may be a stretch, or not, but if we can’t put away murderers and rapists, how can we ever expect our ASD children to get their needs met in school?
    xo DOAM.

  7. I know I read them too. The word heartbreaking does not begin to describe the feeling. How can this be fixed? We need to educate ourselves, our teachers, our community leaders. I thank God everyday for all the people who taught me how to teach and care for my son. I am so grateful for my mom who always told me that the brain is amazing and we can train it to do whatever we want. That our limitations do not define us. I wish there was a free comprehensive on-line website with webinars and handouts from all the best Autism Specialist. Some where a mom can go for potty training advice, a teacher for reading comprehension techniques and tips for teaching kids self help skills. The 10 things your Student with Autism wishes you knew is a great resource very basic common sense advice for teachers and parents.

  8. Actually not to be cynical but in situations like this, “It takes a lawyer.” That’s just the reality of it all unfortunately.

  9. I have a bumper sticker on my car: “Yes, You can ask me about autism!”

    I get stopped in parking lots and fast-food lines all over town. That is how desperate people are for help.

    It is incredible.

  10. Bless you! I have to say, to some extent I get it too. I have had strangers call me at home because they get my name off of committee rosters and seek me out. I would talk to them for an hour trying to help. I eventually evolved (beside a blogger) into a part time advocate. In MICHIGAN you can have families call Michigan Alliance for Families for issues with school. We have Parent Mentors who work with families and if a situation calls for it they refer to advocates. These are funded by a grant from the state of MI. There is no cost to families. I have been able to help set up many programs in schools.

  11. I’d love to see the AS’ “School Community Tool Kit” being shared in EVERY school (and in-services being held using it) and the “First 100 Days Kit” being given to everyone newly diagnosed. These guides can even be e-mailed (though the files are quite large).

  12. Wow. That hit a little close to home here as well. I am not the advisor, the receiver of requests for help or info… Unfortunately, I have been the requestor. While, it obviously wasn’t your intent, I feel guilty for having laid my problems on the doorstep of someone else. I am still glad I did. Without your help, Jess, I wouldn’t have even known the term Neuropsych, and my little one would still be completely without help. We have made some progress in the last day and a half. Laywers cannot always be the answer. I could never afford a laywer. Knowledge is where the power lies. If we could know where to go for evals, what therapies are available, which magic words unlock the school’s doors and funding, we could better advocate for our little and not so little ones. Keep fighting and saying what you want, what your baby needs and THEN maybe you see results. It’s shameful the way we are treated at times. Thank you for everything you do, Jess.. And all of the rest of you. You may never know how much you have helped.

  13. As a former educator, this post, particularly that excerpt from the teacher, was a tough read today. The discrepancies in services, ranging from Early Intervention to school programs to lifetime care, from state to state, even town to town, is staggering. Sometimes I think there are so many resources out there that’s it’s just so overwhelming for parents to know where to start. Hopefully, your writing today got at least one family headed in the right direction. Great suggestions from comments today too.

  14. Oof. I could just say “ditto” to everything Jennifer wrote! Also, each state has a parent information center (it’s federally funded) which is designed to provide resources, information and parent/peer counselors/advocates to help parents navigate the educational system (esp. special ed.) They often hold free workshops about things like IEPs, behavioral plans, knowing your rights, etc. When all else fails, state depts of health and human services, state dept of ed…both have liaisons and/or informatin available to help people find the right resources.

    And, while it may sometimes take a lawyer, that lawyer is only ONE part of the very large village it takes to help our children.

  15. Jess, thank you for all you do. No one person can help everyone, it’s just not possible. I have to thank you, from the bottom of my heart for helping me. You will never know how that ripple of yours has touched my heart.
    I wish I could help ease the burden you feel and people snarkily telling you what you should have said are truly clueless about all you have DONE for so many.
    Remember that it’s ok and perfectly acceptable for you to take time for yourself, shut down, and heal your own wounds. You don’t walk this path alone. We all walk it together and those who criticize the good you HAVE done aren’t really worth giving a second thought to.
    And I have Jersey on speed dial. Remember that. ;oD

  16. Hi. I’m new to your blog. I found you through links from autism speaks website pages. I too, have a daughter on the spectrum, and am drawn to the rawness of your writing. It feels very real to me, and I wanted to let you know I am here, saying thanks to you, you who tells desperate teachers where to go and how to get help. We are all stumbleing around in the dark, yes? At least we are holding hands. I’ve joined your chain of hand holders now. Take care!

  17. Again, thank you. I may say this every time I read your blog. But I am sincere. Thank you for your words. Some days for me…the most powerful help I can receive is simply knowing that someone else knows what my reality is like.

  18. Great post, graet comments. Her plea for help is heart-wrenching and I hope she does not get burned out by the system…we need as many like her as we can retain!

    Are there really docs out there who prescribe Risperdone and Prozac to a FIVE year old without also pointing the family toward whatever resources and support services their local autism community has mustered? Looks like we need to continue educating the medical community as well as the school systems and society at large about the importance of networked supports…(sigh)

    I love Heather Mac’s ‘chain of hand holders’ comment/concept!

  19. You know what really gets me are the parents who have to do what we do, manage/negotiate/track, but they also speak English as a second language. Or be on the spectrum themselves so meetings etc. are very, very difficult. We are in a great district but I’ve known each of those types of moms, and it is so rough for them.
    Jess, one suggestion would be to direct these parents to find groups in their local area/district – support groups, sp ed meetings, etc. – and network/become friends with other ASD parents in their district. Get them talking to other parents and have them ask questions. It does two things: a) it makes each parent feel like they’re not as alone, and b) people can be so much more potent when they put their heads together. As for teachers, encourage them to start asking questions within their district to find out how THEY can be helped to help their students.
    In other words, you don’t need to have all the answers, and there’s no way that you could. But you can encourage parent & teacher alike to start meeting others in their situation, and keep asking, asking, asking. We can help each other more than we know! XO R

    • but they also speak English as a second language. Or be on the spectrum themselves so meetings etc. are very, very difficult.

      yes, yes, yes. i should write someday about the meeting i had with all of my district’s upper administration in which we talked about this. you know, when i have time. *evil laugh *

      and i always suggest googling local resources. you’d be amazed how many people have come to me saying that there are NO autism resources in their state and then i’ve googled ‘[nearest city] autism resources] and sent them 4 links. every state has an ARC at the very least, most now have some sort of advocacy programs. there’s always SOMETHING!

      all hail google!!

  20. I get this Jess. Not a day goes by that I don’t hear from someone about autism; needing my help as a parent, needing my help as an advocate, etc. What burdens me is that I can’t help most of them because the help doesn’t exist. I can’t let it roll off my back because I’ve been in those shoes, asking for help so desperately from anyone and everyone. But sometimes, it’s just too much. Because it never ends.

  21. I have no words except those to express gratitude for what you’re doing. I have a 7 year old with Aperger’s and have just now found the time to come up for air and write about it. We can only do a little bit at a time, in in-between our otherwise busy lives. The fact you’re out here and doing all of this has me humbly saying “thank you.”

  22. I feel exactly the same way when I look at the AS Facebook page. It’s just so damn much..

    I always remind myself of the JFK quote: “No one can do everything but everyone can do something..”

    I tend to focus on the latter part of the sentence, thinking that EVERYONE can do something .. But I think you and I both need to look at the first part of the sentence .. “No one can do everything..”

    As much as our hearts ache and we want to fix it for everyone it is just imposibble. That said, we are both doing our “somethings” aren’t we?

    Please know that your something reaches into hearts and minds all around the planet, reminding people they are not alone and providing them with invaluable information. Keep pouring your love into your writing, my friend. Your “something” is changing the world.

  23. Aloha from Hawaii. Little did you know that I your blog every night, sipping a Mai Tai and feeling the cool breeze from the ocean just kidding!

    ASD and Developmental Disorders are present in Paradise too. We’ve started our journey with our 4 ½ year old daughter a few years ago and your blog has been such a blessing. Like most of us moms, I am constantly searching and looking for the best resources and ideas to help our daughter reach her full potential. But that’s not what I look for when I read your posts. What I value most is your stories. Your stories of joy, your stories of pain, your stories of laughter…all of them. Your willingness and ability to share your raw emotion and feeling with us is truly a gift.

    Your blog helps me pause for a moment from the frenzied pace of school, therapies, work, and taking care of our 9 year old son… to process my own feelings, my own hopes and fears. It makes me feel less alone.

    While advice is what we will always crave to help our children, the stories we share with one another are the things that will bind and heal us.

  24. I don’t know how you do it. How you manage to write something so amazing just at the right time for so many. I don’t know where I would be if you didn’t have this blog. Do you know that Jess? A year and a half ago, your blog connected me with so many other moms like me, which in turn has allowed me to have support that I just don’t have here at home. Your blog was the catalyst for my online support group,and the birth of my own blog. Which in turn has gotten me through some incredibly tough times.
    Everyday, in those 45 minutes, you do something amazing.
    Thank YOU hermana.

  25. You know, I’ve started to get those sorts of emails off my blog, which has a MUCH smaller readership than yours.

    Its humbling.

    I remember when I started digging (can it really have been 3 years ago). I was OVERWHELMED with information. I actually read IDEA, and walked into my DS’s first IEP with a copy of the law.

    I wish that it wasn’t so common to hand parents a diagnosis and drop them in the deep end.

  26. Wow. WOW. That hits close to home. That could have been my son’s teacher! (except of course, we don’t have access to a psychologist and he’s not on medication) We’ve finally pulled him out of school and there’s heartache all over the place. We’re heartbroken and angry because the school has failed us so terribly and the teacher is heartbroken because she cares, but is simply at a loss.
    So thank you. Thank you for saying what I feel so often but feel like I’m not allowed to say out loud. And God bless you for noticing that all those messages are attached to actual people who are hurting. And thank you for continuing to put yourself out there even when it seems like more than you can bear.
    This journey is hard. Thank God for moms like you with the courage to blaze a trail so we don’t have to fight our way down the path alone!

  27. I know it’s been said many times already, but thank you. Since my son’s PDD-NOS diagnosis 6 months ago I have mostly felt very, very alone. Basically we were left stunned (though looking back, the signs were clearly there, I suppose we were in denial), and with a few sheets of paper directed back out the door. Not for any lack of humanity, but simply because of a very long waiting list. Through our district, our son is now receiving services in preschool and we are already seeing great results. We are grateful for that. But next year looms large and the options narrow significantly. I am gearing up, ducks in a row, hoping to avoid a fight. Thank you for making this journey a little less terrifying.

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