Tag Archives: special needs parents

10 Keys to Success in Working with Special Needs Parents

IMG_4722Every now and then, I come across articles giving suggestions for interacting with parents of special needs children.  Usually, they’re written by an educator or a special needs parent and are well-meaning.  But I’ve noticed that they’re usually missing something.  Either they don’t have a clue what special needs parents go through or need.  Or they don’t have a clue what the real life of a teacher is like or the precarious position they are operating from when advocating for students and advising parents.  So, the suggestions are incomplete because they’re either unrealistic or coming from a place of not knowing.

I’ve had the unique experience of sitting on both sides of the IEP table.  I’m both a veteran teacher and the parent of a high needs child with nonverbal autism.  And that gives me insight that’s both helpful as well as painful.  It’s difficult to sit in on an IEP now – either my own child’s or someone else’s – knowing what I know.  I want to jump in and say things that might not be welcome.  I want to fight for services I know there is little money for.  I want to bang my head on the table, knowing all too well how what I’m hearing will come across to the child’s parent.  I want to lash out, because I know when I’m being “handled.” I know, because I’ve been – and am – in their shoes, both the educators’ and the parents’.

Here is what I wish my colleagues knew about how to forge positive relationships with parents of special needs students:

  1. Assume nothing. Over the years, we meet a lot of parent types.  And like everybody else, we tend to categorize them.  We quickly infer whether they have an education, are likely to help their children with homework, or if they know anything about their child’s disability.  We then react or condescend accordingly.  Be careful about that.  I’ve met highly educated parents who know little about their child’s differences.  And I’ve known poor parents with terrible grammar and threadbare clothing who’ve researched their child’s condition tirelessly. People will surprise you, so make no assumptions based on appearance, community standing, or diction.
  2. Understand that the child you work with isn’t the child they live with. You’re seeing just a snapshot of that child in an environment that can be stressful, unfamiliar, and unforgiving.  The child you believe to be distant may be quite loving at home.  The child you believe won’t communicate at all may very well communicate with his siblings.  Remember that no one is the same in all settings. Not even you.  Once you learn what a child is capable of outside of school, work to create a similar comfort level in the school.
  3. Give them a chance to talk. Special needs parenting can be a lonely affair.  While friends are posting about baseball wins and science fair prizes, our children’s successes aren’t easily appreciated by all.  But parents of children with disabilities have the same need to brag on our children, to voice our fears, and to soak up all the little stories you can share with us.  It matters.  And this meeting with you may be the only chance they have all year.
  4. Ask for their insight. Just because they might not be fluent in educational or therapeutic terminology (or they may be), it doesn’t mean they don’t have unique insight into their child.  Listening to how the child functions at home and in the community can inform how you approach instruction, behavior management, etc.  There’s no lab quite like living with a child with a disability.  Respect their experience, and benefit from it when you can.
  5. Reward their child. Often, special needs kids aren’t recognized in front of their peers and their community.  This is defeating to everyone. The students need their accomplishments celebrated. Even if they aren’t cognitively capable of understanding the award being given, everyone can benefit from applause now and then. Peers need to learn to appreciate different kinds of success.  Parents need a moment to feel proud and take pictures.  Our communities can always use a smile.  Don’t forget your special needs students when it comes time to celebrate.  You may have to come up with creative and unusual rewards.  But do it.  And do it up big.
  6. Give the gentle nudge, and then walk the first step with them. If you want the parent to register with an autism center, special needs athletics, or a parent support group, take it one step further beyond merely mentioning it.  Facilitate an introduction, if possible.  Send a link by email.  Ask for a flyer and personally hand it to them.  Sometimes the daily life of a special needs parent is overwhelming.  You intend to do things, but other stuff gets in the way.  If you can, help them get started in things you think might benefit them and their family.  It might be just what they need but don’t quite have the energy to initiate.
  7. Offer support services for their other children. Alicia Arenas gave a wonderful TED Talk about “glass children” – the children of special needs siblings.  These kids have their own needs that are often unmet.  They may go years without ever being able to speak to anyone who knows where they’re coming from.  Start a support group for siblings of disabled students right in your school.  Give them a place to share their experiences.  This will support the entire family and earn you brownie points with parents who worry just as much about their typical kids – but, by necessity, must focus more attention on their siblings.
  8. Surprise them with positive emails and text messages. It’s funny how many school districts frown upon this sort of thing.  But they’re foolish to do so.  There is nothing that will put a parent in your corner quicker than to send random positive pictures and texts home.  I don’t have time to talk on the phone.  But a text in the middle of my day showing him participating in circle time with a “He did ____ today!” melts my heart to goo.  A teacher or aide taking time to do that convinces me he’s loved – which will go a long way to forging positive parent-school relationships.  Learn how to use the little emoticons and apps that will cover other kids’ faces from the photo and text happy things about your students.  It’s a sound investment.
  9. Help their peers to interact with and understand their children. Teach acceptance.  Talk about differences.  Start a lunch buddy program.  Read stories aloud that will foster empathy.  Push, cajole, and fight for the emotional well-being of their children in school.  Not only will this do much to increase parents’ confidence in the school, it will have a direct impact on the child’s school performance.
  10. Tell them the truth. If you know that services they want for their child will not be approved by higher-ups, do not lie and say they are unavailable in your school.  Technically, there is no such thing as “not available” – if a student with a disability requires it to learn.  Tell the parent to call for an IEP meeting, make your recommendations to the staffing specialist/ESE director/principal, etc., and make the higher-ups address the request.  Yes, advocating for students and not incurring the wrath of administrators is a balancing act.  But by playing a part in dishonesty, you are ultimately perpetuating the cycle of students in your district not getting needed services.  And that’s not why you became a teacher.

IEPs and some interactions with special needs parents aren’t always fun.  Lack of funding and awareness are to blame – although the system pits parents and schools against one another.  But it doesn’t have to be that way.  My son’s IEP team laughs, shares cute stories, celebrates successes, speaks honestly about expectations and struggles, and generally functions beautifully.  But that didn’t happen magically or overnight.  In the end, positive school-parent relationships are key.  Invest in that, and you invest in both your students as well as your own happiness as a professional.

The Bears in the Park: Anxiety and the Autism Parent

????????????????????“Worry is the thief of joy.” – Unknown

I read with interest the other day a post by psychiatrist Dr. Gail Saltz, “This Is You on Stress.”  Being stressed out all the time, I’m becoming increasingly aware of its effects.  Dr. Saltz says stress is an evolutionary thing, a fight or flight response triggered by a perceived danger.  In dangerous situations – such as the possibility of encountering bears in a park- it keeps us aware and can save our lives.  The problem, she says, is when you are removed from the danger but the fight or flight instinct is still going.  That kind of anxiety is harmful.  She goes on to suggest some strategies for breaking the cycle of unhelpful stress when danger isn’t nearby. I thought about that for a while and how to use those strategies to stop stressing and calm down.   I thought about those bears in the park.

And that’s when I realized.  It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc.  It’s not because of their children.  No, our children give us just as much joy as any others.  It’s because there is rarely a time when you aren’t in the park looking around for all those bears.

What and who are these bears?  There are many.  Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults –and on and on.

So we rarely leave that park.   And we stand – fight or flight response at the ready – clutching the hands of our children all the time.  While trying to live our lives in all the necessary ways.  Meeting the needs of other children.  Nurturing our marriages.  Paying bills.  Working.  Caring for older family members.  Taking care of ourselves – which, like this list, always comes last.  But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.

I’d like to follow Dr. Saltz’s suggestions.  I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation.  Except I’m not.  I don’t have the luxury of letting down my guard.  Because if I do, the bears are still there.  My child will not receive an appropriate education.  He may be traumatized by people not trained to work with autistic children.  Someone might forget to latch a door.  A door within minutes of busy intersections and bodies of water.  He might be treated as a disorder and not a child.  No, the only time I can relax is when he is safe in bed and the house alarm engaged.  Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.

The problem is these fears aren’t unjustified.  My anxiety isn’t occurring in the absence of danger.  These dangers are real.  Because this world is not ready to welcome my son.  A son who will one day outlive me.  A son whom I fear will not – if needed – be cared for by those with good hearts and a desire to allow him as much independence as he is able.  A child whom – in the wee hours of the night – I lie awake envisioning as an old man.  An old man – perhaps with no family of his own – lying in a bed and taking his last breaths with no one to hold his hand.

Yes, those bears are all around me.

I don’t want stress to win, but it’s ever present.  It steals from me sleep, laughter, and peace.  Joy?  It’s fleeting.  Found in bits and snatches – and always bestowed to me by my children.  Yes, it’s there.  But it’s often stolen by the thieves of anxiety and fear.

And in my darkest moments, I fear that lack of joy is turning me into a bear.  Someone who sometimes fails to appreciate the little things.  Someone who will fail to pass on joy to my children – who deserve that in their mother.

Some talk about a national autism plan.  Do we need one?  Yes.  Should it resemble any of the depressing and misleading suggestions we’ve heard so far?   No.  But we must begin to address the needs of children, adults, and families like mine.  We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons.  We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently.  And we must begin to plan for the futures of the most disabled on the spectrum.

Until then, I remain perpetually on watch for bears.

If you liked this post, you might also enjoy “It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset.”

 

 

Growing Pains: One Year of Flappiness

 A year ago, I sat on my couch – staring at my computer screen, trying to come up with an original name for a blog.  I don’t remember everything I tried, but I do know just about every domain referencing puzzle pieces is taken.  (I’d like to take the time, on behalf of the autism community, to issue a huge mea culpa to the online jigsaw puzzle industry.  Sorry.)  After giving up on puzzles, I started over with flapping, then flappy, then happy – and Flappiness Is was born. 

I needed an outlet.   I looked at a few autism blogs (quickly realizing special-needs parent blogging wasn’t exactly a new idea).  I noted that most of them had a presence on social media and resolved to do the same.  And then I wrote my first fledgling post.  My goal was simple.  I just wanted to talk to a few people who knew what I was going through. 

And then my world expanded.  I can tell you I never dreamed of the following this blog would attract.  The heartfelt stories of those in the trenches.  Words of wisdom and motherly reassurances from women who’ve already raised their children.  Honest, illuminating, and kind perspectives from self-advocates.  Emails and private messages comparing notes, asking for advice, and saying thank you.  The sharing of tips, advice, resources, information from so many.  I never imagined that this little labor of love would give me so much more in return. 

I’m not the same woman I was one year ago.  My skin is a lot thicker.  I’ve gotten my son formally diagnosed, enrolled him in public school, watched my beloved father pass away, dealt with probate, renovated a house, moved, put my innermost thoughts and feelings on the internet, gone viral, been published in a few places, encountered scathing criticism online, and had a major health scare.  I’m evolving from someone who cared what everybody thought to one who realizes she can’t please them all.  My sense of purpose is growing.  And I’m realizing that I still have dreams of my own that are worth pursuing.

All because of you. 

Yes, this blog has been an extraordinary experience for me.  I still cannot believe that people have been interested in what I’ve had to say over half a million times now.  And I’m so very grateful for it.   I have made amazing friends in this blogging journey.  Wonderful people who have validated my concerns, joys, and even my darkest moments.  Tireless advocates who humble me in their devotion to and efforts on behalf of our cause.  Self-advocates who inspire me to dream big dreams for my son and all those like him. 

Thank you for casting light upon this path, for showing me the surest places to set my feet, and for reaching out to hold my hand.  It’s a good thing to know you’re not alone.

Thank you.

 

 

 

 

“Yeah, but this is a group of people who understand heartache.  Folks like that aren’t the type anymore to get overly upset or judgmental about things that don’t really matter.  They know the difference too well.”

-My Dad  (upon hearing me remark about the incredible degree of acceptance and good sense I’ve recently discovered about the special needs parenting community)