Self Advocacy- A mom's perspective

When I write posts in response to comments or questions on Facebook or other social media... Often, the ones that get the most response are when I write about teaching my kids to advocate for themselves.

Finding out that something about your child is going to make it harder for them to get through life is a difficult thing.  When they are born, we just want them to have it easy. We want them to be healthy. We want them to be happy.  When they hurt, we want to take away their pain.  To find out that something isn't quite the same and that they will struggle is just devastating.

We dealt with illness starting when Seth was 2 until he was about 4 1/2.  High fevers, ear infections, pneumonia, unexplained noise bleeds, chest surgery, infections, tonsil and adnoid removal, speech struggles.  He was a sick little boy.  I learned the true meaning of the foot prints story.  The stress and emotions are over whelming and I'll never forget what I learned.  I have true empathy for parents with sick kids.

We got through all that and started to breathe, just a little.  Something still wasn't right with our little man though.  He was still struggling.  A year later, we got the diagnosis of auditory processing disorder.  We left the clinic with a handful of papers and words that still ring in my ears.  "He's going to have a hard time in school.  But there isn't anything you can do about it.  He's just going to have to learn to cope."

He struggled so much in early school; mostly socially.  He has prosodic presentation of APD and it's hard.  It's hard to be his mommy and listen to him not understanding other people.  It's hard to see him misunderstand jokes or sarcasm or just tones of people around him and watch him hurt.  He's almost 19 now and it still worries me.

What has been interesting for me is empowering him.  When he was a sophomore in high school, he came home one day quite proud of himself.  He was having a hard time hearing in science class.  I had told him to talk to the teacher, go up to his desk, stay after class.  I wanted him to learn to take care of himself.  That day, he had raised his hand and simply told the teacher, "Could you repeat that please.". When the teacher frowned, he simply said, "Remember, I'm half deaf.". The teacher smiled and repeated himself.  At first I was kind of bothered by what he had said and I asked him why he had said that.  He responded, "when I try to explain how I hear, they don't understand.  But if I say I'm half deaf, they understand and they help me." What could I say, he had figured it out.  He was advocating for himself.

On another occasion, his prosodic presentation was really bothering him.  He has an uncle who is the king of quick come backs and sarcastic responses.  Seth has a hard time getting them.  During one visit, he made a comment to his uncle that with his hearing, he really couldn't tell if he was serious or not.  The uncle looked at him and said, so what do I need to do, scratch my armpit or something if I'm kidding?. Seth responded that it would help and they did that for the remainder of the visit.  It's a running joke now.

Ben has struggled a bit more with self advocacy, but he's getting it.  He now knows that if he's struggling with test taking or assignments or notes, he can ask.  But it's  hard.  Now my nine year old it's starting to have some difficulties with tasks at school.  I am trying to teach him to ask and try to get help.  With him I still have to step in quite a bit, he's little. But I try to make him ask for help first.

I don't know what it's like to have a child with a terminal illness.  I don't know what it's like to have a child with a physical disability.  I can't speak to those struggles. I do know what it's like to worry about a child who appears to have a healthy, fully functioning body and watch them struggle and not understand.  I have been told, (by a family member) that my extremely bright child probably just wasn't cut out for private school.  I have been told that my three boys are lazy.  I've been told that they weren't performing up to their ability level.  I've been told they need to apply themselves.  I have heard the lines, I've worried. I've studied. I've written.  I've been angry. I have cried.  I continue to watch them struggle and I wonder what the plan is for their lives.

I've done all this while feeling very blessed that my children have given me the ability to have a sensitivity to the struggles of others in a way I never could have imagined.  Through them, I have also been blessed to be able to tell a story and relate to others through the unique perspective of someone who has watched and learned with and struggled with 4 different stories of becoming successful when your brain works just a little different.  I wouldn't want any of my children any other way.

WARNING!!! WARNING!!!!

I have discovered there are certain catch phrases that get my attention on a regular basis anymore.  They are phrases that I have heard said about three of my children.  They are phrases that are meant to set a tone for action and understanding.  Anymore with me, they perk my ears up and cause me to stop in my tracks.  What are these phrases?

If only he would apply himself.

She needs to take her school work more seriously.

He just doesn’t seem to be performing up to his ability level.

She is just being lazy.

He just needs to buckle down and put forth more effort.

I have heard all these phrases applied to my kids, especially Ben.  If you talk to him, you can tell he is very bright, possibly gifted.  Then you look at his work or test scores and assume that he is just a lazy child who isn’t taking things seriously. 

Honestly, you couldn’t be further from the truth.  In elementary school, Ben came home almost every night exhausted.  He had spent so much of his day trying to concentrate and hear what was going on that he was just done at the end of the school day.  His outgoing like-able personality is honestly what kept that child in the good graces of his teachers. 

What are teachers really saying when they make a comment such as those above?  They are saying that through observation, they have seen that the child is either average or above average intelligence level.  But the work they are turning in is not.  They are saying that this child should be getting excellent grades on tests, but he is not.  When that happens, they are assuming that the child is not trying as hard as they can. 

Any more, these phrases from teachers cause me to really pause.  What I have learned in the past 10 years of working with learning disabled kids is that every one of them has put forth their best effort.  Some of them have put forth their best effort for years only to have subpar grades and be called lazy.  None of these average to above average children asked to be considered slow or lazy.  They often have to work two or three times harder than their peers to get grades that are far lower. 

Eventually, they don’t try as hard.  Eventually their self esteem suffers.  Eventually they question themselves and start to feel inferior. 

As I talk with groups of teachers, I think that is one of the take aways I want them to leave with.  If you are thinking that a child in your classroom is not performing up to his or her ability level, I want them to start trying to figure out why.