My Autistic Boy And Other Adventures In Fatherhood

The final speaker from this past weekends IEP summit was Amy Marlatt from the Disability Rights Advocate, Protection and Advocacy group.

I didn’t expect to learn much here, as Kim and I have had enough IEPs where we’ve negotiated hard, screamed across the table, accused the teacher of not understanding due to not having children herself, brought advocates…played good cop and bad cop.  

We’ve also now moved into a place with the school and district where they (teachers, administrators, etc…) understand where we are coming from, what we are willing to do, and what we are not willing to put up with.  That might sound ‘tough’, which is not what I’m really after with this posting, but they know we’ll go as far as we need to for Demetrius, and that we’ll be as involved as possible (see earlier postings about Kim’s involvement at the school, etc…).

What surprised me here is not what Ms. Marlatt said, it was what the rest of the people around were saying:
•    You can’t challenge a prinicipal, they are pillars of the community
•    The school system is right, because the educators are the experts
•    The reason this is the case is because Boyle County (where this seminar was taking place) is rural, and if there are issues everyone knows about them, it isn’t like urban areas, such as where Ms. Marlatt lives (they assume she lives in Frankfort).

So with this defeatist attitude, one gentleman in the back asked, so if my kid is getting picked on and there is nothing that the school will do for him in terms of services? What should I do?  A few of us said, “well, you can always move.”

This solicited a chuckle, but another woman said, “Look, we’ve had a bad experience with a school district not far from here, to get our child into the Boyle County school district before we moved, we rented a room at an apt. so that we could claim residency.

“Yes, there was risk in doing this, and we sure had to get up early to get our kids to school here, but it was worth it,” she said.

I mentioned that it isn’t always fire and brimstone, and that some of the lessons we’ve learned support exactly what Ms. Marlatt was saying. We’ve hired an advocate, and it DOES change the dynamic in the room and even if the principal or administrator is being adamant or obstinate, having that other person changes the tone, usually from controversial to some level of conversational.

In Fulton County, we quickly realized that if the district administrators were going to drive up to Alpharetta from their main offices, they were going to challenge everyone, and if they found the principal/teachers/special needs assistant off base, they were going to call it like they saw it.  Their goal is to get everyone in the room on the same page – EVERYONE.

I also said we realized that the IEP wasn’t a one time document, it was a living document that could be adapted to Demetrius’ progress, or lack of progress.  Teachers are willing to try something we suggest if we are willing to revisit it if doesn’t work, and vice versa. We had IEPs practically every six weeks his second kindergarten year at Abbotts Hill.  We made progress this way with some of his goals and objectives, and it gave us a chance to get to know the teachers/administrators and special needs assistant, and them us.  I believe this tactic paid off for everyone. 

Ms. Marlatt did mention a Website that might help some of you moms: http://www.mothersfromhell2.org/.

It is hard to tell someone in an experience that isn’t the same as yours that it is okay to challenge authority figures.  Right or wrong, Kim and I challenged, and though we actually were one of the families that were willing to transfer schools when it didn’t work out for us at Lake Windward Elementary (we made mistakes, we admit that), we learned from it and, I like to think, became better at this negotiating and IEP process because of it.

No principal knows better than Kim or I what’s best for Demetrius.  What they know are better techniques and skills than we may have or are even aware in our arsenal. To a certain level, they are more objective and can provide ‘non-emotive’ feedback on what is working for him, and what is not working.  We need them to teach him, and teach us, to be better when it comes to helping out with homework and assignments at home. 

But none of us can ever forget that we have a right to speak up, and if we don’t agree, it is okay to say so, and some times dig our heels in…and if we have to, take the situation to the brink… and even transfer schools if need be.

Don’t ever give up folks.  Advocate, try every tool in the shed to get what your kid needs and deserves, and don’t be afraid to ask for help if you need it.  But mostly, don’t ever doubt yourself when it comes to focusing on getting what you need for your kid.

One of the more interesting speakers yesterday was the Danville High School Co-Op teacher, Mike Pennock.  He’s been doing this a long time. He is in his 31st year of teaching and he discussed a number of things I found more than just a little bit interesting.

As he got started, he discussed when he started teaching in the late 70s.  Back then, he stated ‘your’ (he knew he was speaking to a special needs parent audience, so I was okay with this language) kids would have been taught in their own special classrooms in their own special wing of the building.  Further, if this wasn’t bad enough, they wouldn’t have eaten with the neuro-typicals, nor socialized in anyway with them.  It wasn’t they were shunted, rather, it was they were separated.

Today, as he said, its inclusive and he feels that this is absolutely huge. Yes, there are moments when some neuro-typicals act inappropriately, but for the most part, they integrate to the best of their abilitites and they should be integrated, because, as he said, life is integrated.

So how does this integration translate into his classes and co-op programs?
First, one of the things the special needs teachers, IEP team, parents and Mr. Pennock do is evaluate the student.  The painful part of this conversation was here – your kid may be at his/her highest ability of education, at this point we need to start ‘training’ (my word here) him or her for the workforce.  Ex: that the special needs teacher gave – training your child to shake the hand of his/her employer, not hug him/her.  Good point.  

So a parent asked, what type of jobs?  Hostesses, cashiers, etc…and you could hear a pin drop. Is this it? The best we can hope for our children in these types of programs?  No said Mr. Pennock, but it is the type of employer that will work with your child, or any high school kid, for that matter.  He does have a child (not special needs) working with the county lawyer, but it is unpaid – but the kid wants to go to law school.

While this made everyone a bit more comfortable, I still had visions of Demetrius working at Walgreens or CVS, putting Cheetos on the shelf and helping grandmas with ordering their digital photos.  

But I get it – school is about preparation for the future, for each kid, not for your parental dreams.  Nuff said.

He further stated that you know what, not only are these kids in the classroom and its great for the kids and school, they are often the best performers in the program. They are proud of their jobs, they do their best, they don’t resent being asked to do things that they may think may be ‘below them’, they aren’t petulant, and they get their forms signed and turned in on time.  There are 174 ‘work days’ in a school year, and most of these kids only miss when they are sick or its vacation. What more as a teacher can you ask?

Who else is in this program, a parent asked?  Teenage mothers, kids who want to be involved in ‘business studies’ (he also teaches a marketing and business principles class) and ‘at-risk’ kids who won’t earn a high school degree in a traditional college prep program, this is their other option.  Again, the parents went quiet.

Can I see a kid teasing Demetrius or bullying him?  Absolutely.  Isn’t this me being stereotypical, not unlike other parents are when they think of special needs kids? Absolutely. Shame on me.  But in many ways this is the saving grace of the Co-Op program, it is training kids to be proud and better at things that I may not be putting value in/on.  Again, shame on me.  So I rationalized this fear out of my head.  

I found this session interesting and Mr. Pennock to be very engaging and positive.  He wants kids who want to make a difference and try hard, and you can say that he genuinely didn’t see an issue with a kid being at risk, a teenage mother or special needs, as long as they were willing to try, learn and work for what they wanted.

At the break, some of the parents approached him with questions.  He answered many questions with regards to his program, and then would bring the special needs high school teacher into the conversation when it came to particulars on IEPs and the Co-Op program.

I heard him say that simply some kids didn’t need a lot of IEP support due to where they are on the spectrum or their disabilities. Others, he’ll spend half an hour or so every couple of weeks on going through to make sure the kids are hitting stride, and working with the employers so they understand what the kids are supposed to learn and work on.

Isn’t that great?!?

This guy will probably be long retired before Demetrius ever would get to high school, and I’m not moving 45 min-to-an-hour south of Lexington to go to Danville High School, but I will tell you what – I did like what this guy was saying from a micro (IEP for your kid and working with a teacher) and macro level (70s non-inclusion and 00s integration).

Well done Mr. Pennock. Well done – keep it up. Any kid working with you to develop life skills is a kid that’s better off.

This morning (Saturday), I drove to Danville, KY for a seminars on IEPs in the state of Kentucky. I would guess there were about thirty parents there, and a number of local educators.

I’ll be writing over the course of the weekend about it - while it is fresh in my mind. 

Now, as I’ve said before, I’m not the most compassionate guy in the world, and if I wasn’t new to the state, I’d have left with having listening to the whining and crying.  But eventually it died down and it turned to some good solid conversations.

However, I will start out on the personal side, and one of those things you realize while listening to stories and lectures that I often forget in my day-to-day life.

Kim and I are EXTREMELY LUCKY that we have a lifestyle that enables her to be so active and involved in Demetrius’ life. 

One woman at this meeting was talking about her husband who had to work today and couldn’t come to the seminar… and that she had to have the IEP for her kid scheduled at 7am in the morning, and it took about 3 IEPs to get through the content, because she’s carrying two jobs right now, and to be at work by 8:30 am.  One of the jobs she is carrying is giving her enough hours to qualify for health insurance, the other pays for therapies.  She just doesn’t have enough time to read everything she needs to read about autism, go online, and read everything the teachers send home.  She feels that she is letting her son down, not as in the loop as she needs to be, and she has to trust the school too much, etc…  Of course she cried.

Every time the discussion turned to ways to create templates for teachers, emails, special meetings or calling an IEP more than once a year to go over things, she would whimper and put her head down.

At one of the breaks I heard her say she came to the meeting to learn some things, but ultimately she’s learning she’s not doing enough, and she’s not involved enough.  The meeting probably was anything but helpful for her, rather, was fulfilling her worst fears.

So it got me thinking.

I guess, like anyone, I could view my life as being a bit unlucky - unlucky that I’ve got a special needs child that will grow to be a special needs adult - one I worry about in this economy and the future of being able to fully take care of in his life…create an environment that could lead to a comfortable and fulfilling life for him…that Maya’s life is at some level unlucky because she’ll probably have to take up the rope to an extent of caring for her brother after her mother and I are gone…

But instead, I should be viewing my life as lucky.  Lucky that Kim can stay home and go to the school if there is a problem, or not. That she can get to know the school faculty and administration… because she can spend a couple of hours running copies for them or working in the library, or help out in any other way they need.  Read everything, respond to everything, work with the teachers on…well, everything.  To help them and the boy have a better educational relationship and experience.

That ‘everything’ includes creating a template on his going to the library by himself to check out books, what steps he has to take to get a smiley face and continue with this activity that he takes such pride in.  In fact, I’ve heard, this actually has helped him curb his TV/movie talk - too much of it and he can’t go to the library. 

These things can be created and worked on when you have the time to focus and figure things out.  Great IEPs are written when you can interact with the teachers and feel like everyone has the same POV, or at least, everyone knows what everyone else’s POV is.  Individualized strategies and tactics can be tailored when you have the time that Kim has…and she throws herself into it.

We are lucky, because after this morning, I kind of feel like we have the whole enchilada, and is there anything in life where you can say that?  Especially when talking about an at risk autism child?

This mom I described above?  She’s probably dog tired every night, and does what she can before she drops into bed, to do it again the next morning - and she feels like it isn’t nearly enough.  Only she knows. I know Kim doesn’t feel she does enough, but I can’t imagine Kim’s guilt if she had to work two jobs and couldn’t be involved.

At 2:38 pm on a Saturday, she probably feels depressed after this morning’s session.

So today, on this Saturday afternoon as I type this, I’m feeling pretty lucky. I need to keep this perspective.

Tina Dula is a reader that asked a question about one-on-one attention in school versus a more inclusive environment for Demetrius.  Her son is coming up through the system here in Fulton County and will actually, I believe, attend the elementary school that Demetrius went to last year.

Our goal has always been straightforward – the more inclusion for Demetrius, the better. Achieving that goal has been anything but straight, or forward.

The path was to have him in kindergarten twice, once primarily in special needs with a number of hours spent in mainstream, and systematically, when he could handle it, moving more and more mainstream until the percentages changed.  Hopefully, he’d be mainstream by 1st grade. Sadly, this hasn’t turned out to quite be the case.  So as he moved more mainstream last year, we had to have a discussion of where the very fine, gray line was so that he could stay at the special needs elementary school without switching back to his home school (in Fulton County, when the percentages are more mainstream than special needs, you have to transfer back to your home school if you aren’t attending it).

And, the first year of kindergarten was a nightmare.  I’ve covered this here or there on the blog, so I won’t repeat – but make sure if you do have your child in some mainstream classes, and that he is placed with a teacher with some experience. Not someone fresh out of school or has been teaching such a short period of time that they’ve never had a special needs child of any type in their classroom.  Further, we took the ‘medication’ plunge about midway through the first year and Demetrius attention to task improved.  About 2/3rds through the year we finally got the aide for him in the class – that took some fighting for.  Kim really took it hard from the teachers and administrators – she pressed and they pushed back, called her a ‘zealot’.  The well was poisoned.  Kim stood her ground and we got what the boy needed, but there was too much collateral damage…even when we played the good cop/bad cop routine.  It was a good thing that he was making progress.  He was able to handle more mainstream work and thus – going back to his home school – benefited everyone.  

Year two of kindergarten at the home school?  Much better.  His homeroom teacher was teacher of the year at the school the year prior (we learned from our mistake) and is very much a focused, by the book, push the kids to acheive teacher. She’s sweet like a kindergarten teacher needs to be, but she’s also the boss, no doubt.  Good for Demetrius.  We started out the year with the assistant, mostly mainstream, with some IRR time.  About midway through this year he seems to have plateaued academically, we aren’t yet sure of the reasons but we have adapted and have him in more IRR for some language arts. TBD if this was successful or not.  This year has been, from my point-of-view, much more successful from last year. But we are still battling for certain things in his first grade IEP…and I have resigned myself to this being a very hostile, hard time for everyone involved. Or at least for us, for us it is all very personal. I think ‘they care’, but they can only care so much and have many, many rules.  That can be a very wide gulf for all parties to swim across.

So, that’s an overview.  A few more points:
•    IEPs aren’t in stone.  Moses does not come down from a mountain with them.  They can be amended and changed. It is up to you and your family to monitor and evaluate when junior needs to move from X to Y…get it amended as quickly as possible too. If certain parts of the IEP just don’t seem achievable, then amend them.  If he/she needs to spend more time in IRR for X,Y or Z reason, change it. But don’t fall into the ‘wait until next year’ trap. You can change it now
•    The special needs classrooms have trained professionals. But your child might be fringe. Demetrius is high on the spectrum and crosses back-and-forth, some times it seems with the direction of the wind, between being really special needs or just slightly.  If he/she (mainstream/regular) is fringe – then really scope the teacher he spends a lot of time with, she/he’s hugely impactful.  There is a high probability they (mainstream/regular teachers) aren’t trained, and you don’t want that in any scenario. They better be trained, at a minimum ‘some level’, to handle your kid. If not, get him/her out of there as fast as you can
•    In terms of IEP stuff, get an advocate.  Big difference in getting what you want. We have IEP Aimee – Aimee Dinehart Rodriguez. She chimes in on the blog all the time.  Aimee – do you have a phone number of email address you would like me to give out so folks in this area can contact you?
•    Learn from mistakes.  Look, this is nasty stuff to navigate. It’s your kid, and it seems like you are the last car in the race from the beginning.  But you are only human. Don’t beat yourself up to much. Just learn from your mistakes. Those are different for everyone.  The bullet points are examples of learnings from us.
•    You will lose a year off the back end of your life going though this, so just be prepared to wear your thick skin through this process – with everyone: spouse, family, teachers… everyone
•    Be prepared to fight with your spouse, a lot. Men and women see things differently about where this is all going. Inclusion is more than just being in the room.  You may think that means the teacher calling on him every 7th time. Your husband may think that Junior just being in the room is enough. Know that the two of you disagree. Once that happens, talk and yell through it but try to be inline with each other come meeting time with the teachers/administrators
•    Observe. Then go observe again. And again. You need to observe a few times because it is hard to be objective, and not be emotional initially doing it. But your kid is special needs, other parents might not need to watch Jimmy as much as you need to watch Sally because of her condition. So don’t worry about being there too much…or else how will you know if she’s getting it, or is just staring at the wall for the part of the day just before lunch
•    Our strategy? Heh. Well, Kim is intense – white-hot intensity.  She’s not playing a role – this is whom she is, and she wants it all for the boy!  I sit back a bit more – I’m not in the school twice a week like she is, so my intimate knowledge is way down the list compared to her insights. He has an aide in the class because of her.. I play good cop when she busts out bad cop and I try to be more of the nice guy – even though sometimes I piss Kim off.  But it’s the flies and honey scenario. I try to understand what Kim’s top priorities are, what mine are, and what’s best for the boy and navigate some give and take so we get the majority of what we want, which is what Kim really, really wants. We do fight, maybe more than our fair share – but I’m glad we do, because we are very baseline/honest fighters (and loud).  We may come out bloodied, but we understand each other and where we sit. It is a place to move from. Sure, we don’t see eye-to-eye on what’s best for Demetrius all the time…yesterday, today or tomorrow.  This isn’t special needs, this is parenting 101 stuff – with special needs emotional crap spread all over the top.  I know this though, but overall she’s the lead dog – she’s point on 99% of everything about Demetrius’ education, so if she says its important, I have her back. But we still are learning.  I don’t know what the IEP for 7th Grade will look like, but we’ll be much smarter and tougher when we go through it, I’m sure

Tina, I hope this helped.  All in all, do what you think is best for you kid, but be flexible enough to change, and strong enough to force change when need be.

IEP round one was yesterday.  We were in a room with too many people in a room too small for all of us…always great for a long, protracted negotiation session.  Kim, Jerry and IEP Aimee on one side and from the school: Kindergarten teachers and assistants and 1st grade representation; the principal; speech and occupational therapists; instructional support and school district representation…and an audiologist that had performed a test on Demetrius. Some left after their part, some stayed throughout.

All this for one kid.  One kid.  My kid.

We met for just over four hours straight; we are almost there, very close, for completing the document for 1st grade. We are hanging on two issues that really revolve around inclusion: a lunch buddy-esque program and core curriculum with modifications/accommodations in the general classroom.

Sadly, the lunch buddy idea seems to be an issue about school staffing cuts and employee bandwidth…I just have no other way to describe it. It ended up being a ‘we’ll try’ and very frustrating for Kim, as she was very hopeful for this in 1st grade.

It seems as if ½ way through this year Demetrius dropped off from the mainstream kids and stopped making progress in language arts (LA) and math.  We’ve moved him into resource room for LA for the remainder of the year, but it’s only been a few days.  Talking to next year, the educators want Demetrius in the resource room for his core curriculum that will make him a ‘general education student with more than half of his day in resource room’.  

Here’s where the learning disabilities and autism separate and things get a bit complicated.  

His learning disabilities keep him from being able to optimally learn in a general classroom setting.  Therefore, he’s falling behind.  Autism layers onto that and he’s a visual learner. So significant accommodations need to be made for the boy.  While resource room might be ideal for him for his studies and enables him to focus and best achieve on academics….he’ll begin to lose on the autism condition.  For those that aren’t up on it all…at the heart of all of this, autism, it’s a social disorder. So the less he’s around other kids and the melee that ensues the less he’s coping with ‘the real world’.  

Life outside of school isn’t in a resource room.

So what to do?

The school folk want him to best to succeed academically, which would be in resource (of course it is a bit more complicated and convoluted than I’m writing here, but this is my simpler version) room…. we would like to try math in the general classroom to see if we all can make it with the modifications/accommodations for a six/eight week trial…the school folk are afraid he’ll fall further behind, as he’s already deficient going into first grade.  We want him around and dealing with typical peers every chance he can.

Layer one more philosophical point on this: we (Kim, Jerry, IEP Aimee) feel that there is a natural tendency when there are academic issues to push to resource room.  We don’t want this to be the ‘fall back’.  We want to explore/discuss/argue other modifications/options before this is the solution.  I didn’t feel comfortable that we had achieved this discussion/thoughtware as a group.  So we are going to regroup when/if we have: 1) more information on the math curriculum analyzed; 2) feedback from the district’s autism specialist; 3) other options to discuss; 4) it is clearly outlined what the success metrics are for getting out of resource room and back into a general education setting.

Granted, Demetrius may still end up in resource for both math and LA next year, and that may be best for him, but it won’t be the first option without a fight, so to speak.  I’m not going to get either my ego or my philosophical stance in the way of what’s best for the boy, but I am going to explore the boundaries of all of it before we agree to this solution.

Finally, on this, it is hard for some of the educators to see some of this from our point-of-view…resource room may be the best option, but is it the right option.  That’s a fine line, isn’t it?

I’m sapped of physical and emotional energy from this meeting.  No matter what comes of them, good or bad, you are talking about your pride and joy and his or her future…and see right there, in black and white, what he/she can’t do.  

I write for a living, and I cannot find the words to describe that emotional drop you go through as a parent when you read that your kid is falling behind in kindergarten, page after page of what he can’t do…what he isn’t learning…that the best place for him is a room filled with other kids that ‘can’t’ either.  A special room for the cannots – the future forgottens.  The ones that got unlucky in the gene pool.  Here they learn to read – because, dammit, someone’s got to teach ‘those ones’.

I am the only male in the room each and every time, and it takes every fiber of my strength not to start to cry. I’m not a crier either.  But the pain is always raw at that moment.  Always.    

So tell me why I wouldn’t use all my smarts and negotiating ability to keep him out of that room as long as I can, or explore every possible angle to get him out as soon as possible so that he’s in resource as little as possible?  

What parent wouldn’t?

I hope the resource teacher, who seems very vested in helping Demetrius succeed, understands this perspective…I know it is lost on some of the younger teachers/assistants that don’t yet have children.  The goals are closely aligned, but somewhat different, so it seems, to me: academic success as the definition of success (school folk), academic and social acceptance success (parents/advocate).   

So here we are, with a sticking point being inclusion and modifications…or resource room. I’m not sure we’ve reached the either/or place, but I’m wondering out loud …

Folks from other states outside of Georgia, what’s your experience?  Where are you living, and do you find what I’m writing to be the norm across the land, or is this a red state issue? ☺

We’d sure like to hear from the readers out there.  I’d like to know that in Ohio they do XX, or in California YY…or if it’s basically the same story with a different state flag, where you live.

I forgot one other Demetrius thing this week…on top of the IEP…he has an appt. with a neurologist to go over some ‘anomalies’ found in his EEG from last year. If you remember, last summer (assuming you are a long time reader) the boy had a seizure and after a bevy of tests – these anomalies showed up. Well, we finally got booked with the neurologist – so we’ll see what he says.

What a week for this kid!

Of course, he’s mostly unaware. As long as he’s not getting a shot at the doctor, it ain’t too big of a deal for him.

Last night I got home from the trip and the kids eagerly ran up to me when I walked through the door. They feign love. I see right through them. The hugs and the ‘Daddy! You are home!’ statements are quickly followed up with, “Where’s our gifts?”

Maya was completely enthralled with the Tinker Bell toy I got her. Demetrius was completely psyched, he got a ‘Venom’ action figure from the upcoming Spider Man movie.

Happy with these, sure… But why not more?

Demetrius: Daddy?

Daddy: Yes, Demetrius?

Demetrius: You were supposed to get me Venom and the Green Goblin.

Daddy: Demetrius, how about a thank you for the gift. Be happy that you got one at all!

Demetrius: Daddy?

Daddy: Yes Demetrius (a bit more sternly this time)

Demetrius: Get in your car and go to Target to get me Green Goblin, please.

At least I got please.

Personally, after two versions of the IEP, I’m juiced about what I’m seeing. I don’t think any of it is a reach for the boy next year.  Easily said at a desk in a hotel room in NYC, isn’t it?

For all of you parents that are my age (late-thirties) or older, I think…I stress I think…Billy Squier was at the table next to me at Steak Frites eating lunch.  A bit of a big fan in the 80s…..Of course, I was useless in this meeting because all I kept thinking was, “Is that Billy Squier?”  Anyway, I got nostalgic about the dude, read this story about what he’s doing with his life post rock-n-roll. You’ll be surprised. I don’t think there is a VH1 ‘Behind the Music’ in this story.

Usually on these trips I promise the kids a ‘gift’ if they are good for Mommy. The problem, as always, is the time to get them something. I got smart this time. I stopped at Target before I left and kept the gifts in the trunk of my car. This way, they get their gifts and I don’t stress.

Thank you God for Target!

Short post today, gots lots to do today in the City…

I got off some elevators the other day on the 7th floor of our office building (top floor) and there were some guys working on the elevator car across from the one I was exiting.

I noticed that they weren’t working on cables, rather, they were working on the floor of the elevator itself. This perplexed me. So I asked…was it something that had to be worked on the top floor? No they answered. I asked, then, why would they work on something on the top floor with the risk of something going wrong, and possibly dropping to bottom?

I got an irritated response that this ‘almost never happens.’ Almost being the key word.

This makes no sense to me. If I were in that business, and I was working on anything with risk of dropping, I’d do it on the bottom floor so I eliminated said risk. Unless obviously it was in regards to working on pulling the car up or down or stopping on a certain floor, etc….

Anyway….just an observation. ‘Almost never happens’….people almost never get struck by lightning, doesn’t mean I’m gonna walk around outside during a thunderstorm with a metal pole.

——-

Ms. Amy (Amy IEP I’m going to call her) was over working on the IEP last night. Looks good. Kim got some excellent counsel from the Monarch team I blogged about yesterday to take the majority of the education elements out of it, that they will be addressed separately and focus on the social, behavioral and disabilities elements of it – like sensory and speech. In his troubled education elements, include those, but the focus of this year’s IEP has moved away from being more like a report card on academic progress and more focused on achieving integration and adaptability to the kids and the classroom. (Amy IEP, did I get that right?)

Further, one lesson I have learned is that these IEPs are just a waste of paper if you are writing them for a roadmap for a whole school year. If you look at Demetrius from point A-to-point Z, big progress. A-to-B? Maybe less so.

The IEP should be written in a way that we are still going to see that A-to-Z progress, but ensures we can amend/change/adapt A-to-B when and where needed. Therefore, why get too far ahead of ourselves?

I see in this kindergarten IEP quarters/grading periods where he has ‘5/5’ and mastered a task….three months later regress a bit? Why? Well, might be that a special needs kid can’t put it all together at the same time and build the same way you and I do upon our skill set. So if at the end of the year he is there….do we really need to worry about something that is 4/5 9-out-of-10 times when we could be focusing on something else? These things have to change with the boy’s changing needs. Mallable, flexible and adaptable.

Whitterer on Autism has a great posting on this thinking…I like the corkscrew analogy a lot.

So that’s where we are….next steps are to finalize, and gulp, have another meeting on it before we head off to school for the actual meeting. I think we are almost there….