Shouldn’t we be outraged?

6 May

From the time our children are little, we teach them how to look after others who are smaller, weaker, less capable.

“Be nice to your little sister.”

“Help Grandma carry that.”

“Don’t make fun of that child, he can’t help how he is.”

We try to teach our children to be kinder, more caring people.  “Stand up for the girl being picked on at school.  Don’t be the bully, be the friend.”  Our schools even teach this.

We try to teach our children to be accepting of others, no matter what they look like or what their family is like.

We do all this because presumably, our parents did the same.  I was taught to look out for others, to be polite, to not be a mean girl, to give elderly people my seat on the train.  I was taught, through stories from my grandparents, to not let people walk over me just because there’s something about me they don’t like, to not accept being treated like a lesser person, to stand up and do what’s right.

I guess that’s part of why I blog about special needs.  Because someone has to say these things.  Someone has to be honest.

So this is me being honest.

Why aren’t more people outraged with how our special ed students are treated?

Here are kids, who aren’t always able to speak up for themselves, who have already been given a tough start in life, and they enter our public school system only to be handed yet another short stick.  They are consistently pigeon-holed, put in a corner, short-changed.  The staff in charge of them are given too much to do with not enough resources.  They’re expected to manage medically needy children with no training.  They put their hearts and souls into these kids only to be told they can’t really help them the way they need.  And the parents are told “tough luck, that’s how it works here” when they ask why.   If they push, they’re labeled “difficult” and are suddenly pariahs.  Why?  For trying to do what’s right for their child, like any other good parent.

Did you know that to be an aide to a special education child, by law, you only need a high school diploma?  To be a para-professional, you only need two years of college – in ANY subject.  So the person who is in charge of the special ed student all day is the person with the least amount of training sometimes.  Sometimes you luck out and get the person who has her degree in special education, and you thank God daily for her.

You aren’t allowed really to discuss things with the staff, not in many places.  They don’t want “parental interference”.  They take these children, who are such square pegs, and try to stuff them into a round hole.  Why?  Because it’s just easier for the school to make them conform to the school’s way instead of doing what’s right for the child.

All over the U.S., moderately disabled children – children with IQ’s between 50 and 30 – are expected to be mainstreamed.  They’re expected to sit in regular classrooms with regular students and somehow glean everything they need to know to become as independent as possible.  Which is impossible.  They’re supposed to learn how to count and read and all those other lovely academic things, while life skills are somewhat ignored.  These special ed students, many of who have a hard time with transitions, are expected to transition more than the average student, as on top of everything else the regular students do, they also have to do special ed time and therapy time.

Special ed students have more expected of them, yet are given less.  The parents are expected to trust the schools, to do their best, and not complain if their child gets shortchanged, or jump through hoops to make school life easier, even if it means homelife suffers for it.

And at the end of the day – it doesn’t work.  Our children fall through the cracks.  And no one seems to care.

So I ask – where is the outrage?  Where are the parents, at school board meetings, demanding that special ed students get what they need too?  Why is it so hard for everyone to stand behind these parents who just want an appropriate education for their child too?  We all get outrage when a school district tries to cut art, music, athletics….but special education funding is cut every single year and no one says boo about it.

Maybe I’m ranting because I’ve had two different friends deal with stuff that shouldn’t have happened to their child this week and I’m outraged for them.  Maybe it’s because I’ve been part of such a terrific school system here that I’m terrified of leaving it.  Maybe it’s because I’m still pissed off at the special education director at Maura’s old school, who for two years pointed all the loopholes out to me as Maura got shortchanged.  Maybe I still feel that to her, Maura wasn’t worth the effort, the expenditure.

Maybe it’s all of the above.

I’m angry for my friends, scared for my daughter, and determined to do what’s right.  Maybe others will become outraged too, and instead of criticizing the seemingly over-zealous special ed parent, they’ll ask what is going on, how they can help.  Maybe next time the school district or federal government decides to try to cut funding for special education, they will stand up for it as much as they would for arts or athletic programs.

Because it’s not like we’re going to go anywhere – we can’t.  In the U.S., the options for a special education child with moderate disabilities are few to none.

I’m not really a bitch on wheels, looking to make heads roll.  I’m just the mouthy one who’ll say what other parents are thinking.  I’ve seen the coin on both sides – what works and what doesn’t.  I’ve dealt with some absolutely amazing special educators in both schools, and have worked alongside one amazing principal at Maura’s current school.  You can say I’ve been around enough to know that our kids, and those who actually day in, day out, work with them, deserve more and deserve better.

It’s time we all do what we teach our kids to do every day.  Stand up for the little guys.  In this case, the little guy is special education.  We share feel-good stories all the time on Facebook – it’s time we’re the feel good story makers. And for the love of St. Patrick, if you’re a special ed parent, don’t just share with your own kind, band together regardless of label.

Only then can we make a difference.

Every child deserves to reach their full potential.  Even mine.


18 Responses to “Shouldn’t we be outraged?”

  1. Millie Hill May 6, 2013 at 11:52 am #

    This year, after 5 years, I finally got into my son’s IEP that I will be contacted right away if he exhibits 2 or more episodes of heightened anxiety in the week (with that of course spelled out). It felt like a tiny victory.

    • phoebz4 May 6, 2013 at 11:55 am #

      I had it put in Maura’s that she would be excused from being late for school. It sometimes is the little things.

  2. Renee Anne May 6, 2013 at 12:02 pm #

    Truer words were never spoken.

    The unfortunate part of the situation is exactly what you said: the person that is probably “in charge” of your child on a daily, routine basis, may not have an actual degree in anything, much less dealing with children with special needs. That’s not to say that there aren’t wonderful and fabulous aides and para-educators. There are. On top of that, throw a child with special needs into regular classrooms and you have a regular education teacher that probably hasn’t had any training for children with special needs since they were an undergraduate in college and now they’re supposed to teach this child, as well.

    • phoebz4 May 6, 2013 at 12:08 pm #

      Maura’s first aide was less-than-stellar. As in wouldn’t change Maura’s diaper even, and would be texting on her phone when I’d come to pick Maura up early (which meant Maura dancing around the sidewalk, out of arm’s reach, balancing on the curb a few times.) It wasn’t just frustrating for me, but for the teacher, who had to show this gal what to do, or tend to Maura herself. We were both relieved when this aide was “let go” and we got the super-amazing aide who was absolutely wonderful with Maura.

      Oh yeah, btdt – lol!

  3. Nancy Spivey May 6, 2013 at 12:10 pm #

    Good for you. Education as a whole is under-funded, and special ed is one of those “extras” that are the first to go.

  4. Tracie Guresh May 6, 2013 at 1:25 pm #

    I have to say I am really, truly lucky with my daughter’s school. Every time I want a change on her IEP, I get it. I may be labeled as demanding but so be it. It’s for my daughter and not about me making friends. The beginning of this school year I wanted inclusion in Phys Ed, Art, Music and Library. I just expected kindergarten to 1st grade level even though she’s 9, because she has signicant global delays. The school supervisor over LIU wanted her with her peers. Off she went to some 2nd grade specials. We did tweak it since her attention is better suited in some classes geared towards kindergarten but she now has friends, really great ‘typical’ children, in LIU thru 2nd grade. Seems here in PA we get great care for our children! And don’t get me started on her Aide…LOVE HER!

    • phoebz4 May 6, 2013 at 1:35 pm #

      that sounds great! Other districts could learn from your daughter’s school!

  5. Candy May 6, 2013 at 2:39 pm #

    **standing ovation** / thunderous applause! !
    Hear! Hear!
    I totally am with you and shout with you
    “Don’t ignore my daughter”. “Don’t short-change her or let her fall through the cracks,”
    Just because we don’t have a diagnosis or fit into a pigeon-hole doesnt mean she will not need services.

    Thank you

  6. WordsfromTracy May 6, 2013 at 6:21 pm #

    I too have an awesome school for my son. I believe it somehow begins with the schools principle. We see ours involved in everything, from after school – directing traffic, to running Kindergarten Round Up, to holding a meeting to promote inclusion in the school.
    I am extremely thankful for our teacher and aids, I couldn’t ask for more, they have done more for my son that the educated therapists. I was shocked to hear how little training they need.
    Your post made me realize EVEN MORE how thankful I should be for my sons situation, how I need to be involved to keep it that way, and to get involved at a higher level with schools in our district.
    Thank you for sharing.

  7. emcclure2010 May 6, 2013 at 6:34 pm #

    A freakin’ men! I am so with you…It seems like in the civil rights arena people with disabilities are the last to be served. Again. My brother (who’s 33) has autism and we had both extremes. Horrible experience when he was young and then good services later. But then he graduated…And that is whole new can of…well, nothing. Because that is about how much services he can access. I could rant on forever but yes. Organizing is what we need!! (I’m an occupational therapist, too, so I’m ranting from family and professional angles…)

  8. Trisa Harris May 7, 2013 at 4:31 pm #

    The system is broken, that’s for sure. Making an impact starts with speaking up. Sometimes it takes a little outrage to get people to listen. Thank you for this honest post.

  9. kellie6307 May 10, 2013 at 10:04 am #

    Phoebe, I have been catching up on your blog posts about Maura. You have put into words my life with Aundie. Sure there are some differences, but there are more similarities than differences. I look back and have done so many of the same things, the vast array of toys, the search for answers, the loud voice in school and with therapists, oh I can so relate. You have brought me to tears and made me laugh through these posts. All I can say is that I can’t wait for this summer!

    • phoebz4 May 10, 2013 at 10:23 am #

      aw thanks ❤ (and now feeling very inadequate with words, lol, as that doesn't seem enough!)

      And I can' wait to get our girls together! The three of them will have much fun (or cause trouble…oh well, we'll be at the vineyard, right? LOL!)

      • kellie6307 May 15, 2013 at 8:59 am #

        You are far from inadequate with words!!

        I can’t wait either, I anticipate some fun times ahead!! I will be happy to come to Seattle, but you come my way sometime and yes, we will be at the vineyard 🙂

  10. Paul Hedg-peth May 14, 2013 at 9:16 am #

    I, too, am the parent of an individual who has received special educational services since the second grade. At 19, he’s just now completing his first year of high school. Along with the catchall, EI diagnosis many other more precise labels have been affixed in an attempt to describe some of the challenges he faces. I, too, have seen ‘the good, the bad, and the downright ugly’. I definitely relate to the ‘square peg in a round hole’ analogy. I, too, have seen firsthand how difficult and traumatic life can be for the rest of the family as a result of problems he didn’t ask for and poor-to-impossible choices made by previous caregivers. Slowly and in erratic but more frequent spurts he is beginning to accept personal responsibility for the choices he makes as well. After being completely out of school for more than 2 years, he’s finally in a highly specialized school where he can achieve his full potential.
    I am also a professional social worker and as such I’ve come to realize that while outrage is absolutely understandable, it is critically important to find effective means of communicating/channeling that anger. Attacking the staff for their incompetence rarely serves as effective advocacy. When one attacks, the natural response is to defend, even if you’re defending the indefensible. There is no substitute as the parent for knowing your rights under special education regulations and being able to articulate exactly what the school district’s responsibilities are to be operationalized to benefit your child. It helps move the dialog forward when you can build a ‘frustration bridge’ between your own experiences as a parent-yes, there are times when precious Johnny or Julie brings to your mind murderous thoughts that because your brain works the way it is supposed to you never act on-and those of teachers who are also frustrated and angered by not just Johnny or Julie’s behaviors but as well those of many other students who are simultaneously challenged by what is routine for most of us and challenging to other students and adults in their world.
    Parenting is without question the single most difficult job any adult is called to. Parenting a child whose brain is organized very differently, who’s been subjected to multiple traumas, who simply doesn’t have the capacity to see the world the way adults around him see it-that challenge is the one all parents of kids with special needs must meet. And yes, there is value in networking with other parents who actually understand what this is like.

    • Dana Johnosn May 21, 2013 at 8:21 am #

      Paul, I couldn’t agree more. I am a Special Education Supervisor (currently by definition), a School Psychologist by trade, an aunt to a precious nephew with Autism and daughter to a Physically Impaired mother (who was a Special Education Supervisor for most of her career). Too often I have seen teachers/aides/education professionals WANT to learn/grow more but attacks from agencies/ parents/ legal threats drive them into a tight shell where they rarely open thier mouths in meetings. Many recognize their skill deficits and often ask for Professional Development. I could not be more thrilled when we receive these requests. I also recognized when my nephew was leaning toward a more ‘pull out’ based educational experience. This is where the rubber meets the road… communication. After some family decisions, we had the expectation that he could be educated with his same aged peers. Whew, there were bumps along the way, but he graduated from High School this last Friday night with minimal special education support. Had he needed it, I think his mom would have had additional meetings (that communication piece again) and looked for the balance of his needs and the Least Restrictive Environment mandate.
      I agree with the defense of the indefensible. Attacks on a person or a group does not change their perception, it drives their words underground, under the table where it cannot be seen. When I truly ‘hear’ how a person feels/thinks, I can then work on the perception behind it. Most often, I have found it is fear. True, a genuine lack of compassion is sometimes at the root, but it tends to be a personality flaw that extends beyond the treatment of Students with Disabilities. I will not own that problem, it is theirs.
      Meetings where either party is on the defensive are so counterproductive and unnecessary. Almost all teachers/therapists/paraprofessionals WANT to share the tiniest amounts of progress in a child’s day. I can tell when a education professional has felt attacked (whether they actually have or not) due to these statements, “We are currently working on the prescribed goals and objectives as outlined in the IEP.” Robot speech is one way I know relationships is compromised. Compromised relationships equates to compromised communication (well, real communication anyway). No one wins in this circumstance.
      I did not mean to say so much. It’s just such a complicated and rich discussion.
      Let me close with this, 90% of the interactions I have had as a family member, School Psych. and Sped Supervisor have been successful, even with compromise involved.

  11. My Dance in the Rain May 28, 2013 at 10:31 am #

    This is my fear as well. We recently decided to return to our home state of FL and decided to try school as opposed to home school which is what my daughter is getting now. She just needs more than what she is getting now but I am terrified.

  12. Ramona May 28, 2013 at 11:25 am #

    I agree wholeheartedly! I have an ADHD student who is very immature for his age and may have other things going on that we haven’t figured out yet. It took him failing 7th grade last year and almost failing it again this year before the school was WILLING to step in and offer some help to him. Help that I had been begging for and rallying for since September of the FIRST year he was in 7th grade! I couldn’t have put such eloquence to those words and I wonder if I may use some of the phrasing in my next meeting in August with my son’s school officials? Thank you for posting these blogs!

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