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Saturday, January 5, 2013

Special Education - This Parent's Viewpoint

It is with trepidation that I write this blog, but it's been on my mind for quite awhile and hopefully it will be taken in the spirit that it is meant, which is to share my experience, not to criticize.  I've had children in special education for a total of 22 years now. I am surely not speaking for all parents of special ed. kids, that would be impossible,  just some ideas, suggestions or thoughts from my perspective.

1.  Very few parents of SPED kids - short for SPecial EDucation - were expecting to be parents of SPED kids.  When you're not expecting to learn about something it sometimes takes longer to learn it.  Perhaps sometimes because you're hoping you don't really need to know this stuff, this is all just a mistake.  That means we may need information to be repeated.  There is so much for us to take in and school is only one place from which we are getting information thrown at us.  Many of us have multiple health care providers to keep track of or social workers or psychologists helping us figure out what we're dealing with.  We are on information overload - all - the - time.  Receiving all this info. via various venues may be helpful - e-mails, phone calls, written forms or notes.  Different people like to receive their info. in different ways.  The first of many areas where flexibility is an essential skill for SPED professionals.  Most parents are assimilating all these details while also dealing with jobs, other family members, possibly financial difficulties and lots of emotions. None of these things helps process all that is being thrown your way.  By the way - watch the acronyms.  Not everyone is savvy to the IEP, SPED, SPOT etc. terms - which has changed more times than I can count - and, it may just be me, but I hate feeling like the one left out of the secret society or feeling stupid.  For me, that's the worst.

2.  IEP - the Individual Education Plan - often an experience that is overwhelming for parents.  First and foremost every person around that table should introduce themselves and yes explain what the heck you do - specifically.  Doesn't matter if you've met the parent before or talked to them on the phone.  When you're sitting at a table with maybe 8 or so professionals your mind may blank out and it's awkward if you can't remember someone you should clearly know.  Also - who are these school rep people and what is their job?  I'm still not sure I know the answer to that.  I only figured out two years ago the hierarchy of SPED teachers - it was the first time I knew what a "lead" teacher, sort of the middle management teacher who supervises the SPED teachers at a certain level - was - after 20 years!  That's ridiculous and I'm a reasonably intelligent person who is generally not overwhelmed by my own life issues, I can't imagine how a single parent or one challenged in their own ways handles it.  Statistics vary, but some state up to 90% of parents with special needs children face divorce.  Compassion seems like a quality most SPED professionals would all have and realizing the stress marriages may be under when you are dealing with your students' parents is just one area where that compassion would be essential.

3.  I am a realist.  This may not be true of all parents, but I am very realistic of what my kid's adult life is likely to look like.  This is partly because I have parented 3 adults, all in the DCD category - Developmentally Cognitively Delayed - so I know what it looks like when they leave school and the options that are available.  School is completely different from real life.  In real life every 30 min. or 45 min. or whatever the time period is will not/is not scheduled and controlled.  That's not how the world works.  The majority of people who interact with my kids are not trained professionals who are used to their quirks and can decipher their speech.  When I look at my kids I am looking for how they interact with others and how they adapt and what personal care skills they have or don't have.  Frankly, if a kid doesn't learn to mind other people's personal space, i.e. stay out of their bubble, writing their name or adding numbers isn't likely to help them get a job.  Social skills are everything in the real world.  Academic skills mean nothing if a kid can't speak clearly enough for a complete stranger to understand them or doesn't follow directions.  Every academic skill, especially by the time they reach middle school, should be a vehicle to teach social and job skills.  Again, I'm a realist, only one of my SPED kids will be their own guardians so having a signature will never be needed, but waiting quietly while someone else fills out the form - very important.  Learning how to act around "typicals" is very essential to their adult life and often lacking in our how our special ed. is set up today - see #8.

4.  Independent - not relying on another or others for aid or support.  Apparently this is a word which is defined differently in a school setting than I would at home, or frankly than the entire rest of the world would define it.  An example of an independent skill is to give an instruction, say, wipe the table, and the kid would get a cloth, rinse it out, wipe the table down thoroughly, rinse the cloth and then put it away or hang it up.  That's independent.  I've been told my child does certain things independently at school which, in reality, seems to mean someone pointing, instructing and redirecting  while the child proceeds with the "independent" skill or else they have amazing talents they express no where else.  Either way, these "independent" skills are useless if they don't transfer out of the school setting.  If there's really that large of a disconnect between their school abilities and their out of school abilities we may have a problem.  If they way we define the word independent is the issue, then let's define it together so we're all on the same page.

5.  Perhaps a continuation of #4, but I prefer my kids are praised for "real" accomplishments, not concocted ones.  There was a video recently that showed a "wrestler" who had severe CP.  His coach carried him to his opponent and they "wrestled".  Of course the kid with CP "won" and everyone cheered.  It was completely patronizing and demeaning, in my opinion.  There have been times my kids have brought home art work from school I'm pretty certain they had nothing to do with.  I'm fine with that, but don't want them having "their" art in a show if it's something they had very little input on.  They are capable of having real achievements on their own.  Just as I'm not a fan of "participation" ribbons in kid's sports, I'm not a fan of fake achievements for my SPED kids.  Not everyone is a "winner" and that's just fine.  It makes their real achievements even sweeter because I know they worked hard for them.

6. School is often a big black hole.  My kids are not able to come home and tell me how their day was.  Some because they are non-verbal, but others are not able to have a conversation which is in any way informational.  Sure, other people will say their kids never tell them how their day went either.  I have typical kids too, so I know about that, but I get pretty much zero info. unless a teacher takes the time to tell me.  I can't even know the names of my kid's friends if they can't tell me, usually can't, and teachers can't due to confidentiality I suppose.  It's a really odd position to be in.  I will tell you the stories I want to hear more than anything else are not generally about their academic work, it's about the regular ed. kids who had lunch with them.  I got pictures from the DAPE - adaptive physical education - teacher of my kids climbing the rock wall.  That was awesome!  Parents are often told they are part of the team, but the part who has absolutely no idea what the other players are doing most days.  I know the end goals, but often feel left out of the game.  Any stories that let me know how my kid was at school, what kind of day they had, do they have friends -  anything is great to fill in that black hole.  I don't need a daily phone call, but an occasional e-mail with a personal story - love those.

7.  It is a shame that paraprofessionals are not considered part of the IEP team.  It's a terrific shame when a teacher doesn't realize how very important those paras are in how well our students succeed in school.  Most of the SPED teachers I know are very aware of what an important part of the team the paras are.  The few I've known that didn't know that, well, the classroom environment suffers because of it.  They are the ones who observe those reg. ed. interactions that I'm so curious to know about.  They are generally the people who are responsible for teaching my child proper interactions with typical peers - an essential skill in my opinion.  They are the ones that care for my child's personal cares - a very important and personal part of my child's day.  A great para is priceless and often under appreciated.

8.  It was thirty years ago when our son Chad moved in with us.  Obviously special ed. has changed quite a bit from those days.  One of the things that has changed and yet not changed is integration.  In elementary school, the early years there is a reasonable amount of integration.  As the years go by it lessens and in some cases becomes nearly non-existent.  When Chad was in high school in the early 90's he played the bass drum in the regular school band.  It was not by any means a big fight for that to happen.  We just said he loved music could he do something in band and the spec. ed. teacher made it happen.  It was wonderful.  From what I've seen I'm thinking that would be quite the achievement these days.  We seem to be much happier with keeping special ed. students in their own space and away from reg. ed. students.  During lunch, to my knowledge,  my kids are at a table with a para and at least one other SPED student.  This is counted as integration time.  Knowing what my kids look like when they're eating, it's not what I would consider really prime time for making relationships with reg. ed kids.  Sometimes they gross me out when they're eating and I'm quite used to it.  It's not exactly the time their best foot is forward.  I assume some, if not all,  of it is cost effectiveness, which teachers have no control over.  When Chad went to band a para went with him.  Now, any integration that happens is never one on one, therefore sort of negating the whole concept of having our kids form relationships with typical peers. It's difficult enough when they need an adult close by, but if they have a SPED peer there too, what typical kid is going to approach them then.  I'm sure some do, but it would be the extreme exception.

9.  Holistic - this may sum up my ideal view of special education, but, unless a holistic approach is taken our kids will not be prepared for adult life which is, after all,  the goal.  All of my special ed. kids are adopted and many came from difficult situations, so that's where I'm starting from.  However, I believe this is true of all SPED kids.  Physical, emotional, intellectual and social development does not happen individually.  It happens when the child is taken as a whole.  If my medically fragile child is recovering from pneumonia it may not be the best time to start a new communication program.  If my child has a meltdown at school it may not be the best time to move desks.  If you want to work on social skills get them out of the classroom and into a regular ed. room and work on those skills.  Don't sit in a private room and make up a pretend conversation - that's not the real world and they may not be able to transfer those skills from a made up situation to a real world situation.

If we want them to learn bathroom skills then boys need a male para to go with them.  If you can't provide that, then they are not going to learn those skills at school - period.  Every skill they learn should be multi-layered.  Learning the value of money should be taught more because they need to learn to follow directions and speak clearly and learn personal space.  The likelihood that they will ever pay for something on their own with cash, in my experience,  is next to nothing.  How many of us do that anymore?  Someone else will handle their funds and no cash will exchange hands.  This is even more true as time goes on.  Therefore if those skills are being taught it is because of the side skills they can learn with them - social skills, personal space, speak slowly and clearly, stand still, make eye contact, listen, be respectful,  follow directions etc.  I can tell you from my experience if those skills are not in tact no one cares if your kid can read, write, tell time, or count money.  They don't want them around and there's no chance a company is going to hire someone without some decent social skills.  Some of the quirks people find charming in kids, not so much in adults.  Our kids need even more time to learn adult behavior - like from the very beginning.  Everything takes them longer to learn, there is no time to waste.

10.  One last point.  Most teachers know that parents often get the brunt of our kid's attitudes when they've worked so hard at keeping it together all day long.  They're exhausted by the emotional energy of it all and can't wait to get home and let loose.  Please remember that you often see the absolute best my kid has to offer and we get the leftovers to deal with at home.  Often between dealing with behavior issues and working on personal care skills, table manners, social skills, going to special olympics, sports, church activities or music lessons and the emotional baggage they are carrying - we are exhausted.  I'm sure that there are some parents who welcome homework for their kids.  For us, it is often too stressful.  I also put homework under the category of "independent".  My older elementary typical kid does not need my help or gets help from friends.  My SPED kids will never be able to do their homework independently. This often feels like I have homework to do and I'm often less than thrilled to have homework, especially when it inevitably will cause a massive meltdown.  This is another area where it helps if you can put yourself into our shoes.  Imagine the day you just had at work and then picture yourself going home to spend the evening with a cranky, if not completely belligerent kid who just wants to play and your job is to call them inside or away from their game and sit down - again - to do paperwork.  How many of our kids are already struggling to sit still at school?  I have a kid who generally has to stand at the dinner table because he just can't sit anymore after sitting - all - day - long.  That is just asking too much.  Flexibility is essential in parenting, as it is in teaching our kids and that should include the flexibility to just say no to homework when their mental health, as well as our own, is at stake.  We need to have some time to positively connect with our kids before we kiss them goodnight.  If that means no homework - then so be it.

My hope with this blog is not to offend or even call SPED professionals to task.  I have the utmost respect for most of the professionals my children have encountered and I hope they know that.  It is my attempt to express my parental opinion - mine, not every parent's opinion.  Most of my kid's professionals have been just that - truly professional.  Not perfect, heaven forbid that would require me to be a perfect parent and that's way too much pressure.  I'm thrilled when I know my kids have a teacher who is optimistic, energetic, creative, and flexible.  What more could I ask for.  There's nothing better than sending your child on their school bus every day knowing they will have the best day possible because from the time they're greeted on the bus until the time they get back on that bus they will be with people who are loving on them all day - no matter what kind of day they have.  For all of you, I will be eternally grateful.

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