My Autism Insights

As I promised the district, I went to visit the class they’ve been trying to convince me to transfer Gus to.  I had spoken to the teacher at length last week.  On the positive side, she is very knowledgeable, has a diverse background, and we see eye to eye on many important topics like mainstreaming and homework.  But we also have some core philosophical differences, which could become a problem like the use of candy as a reinforcer.

I spent a good hour in the in the class.  At the moment, the class is quite small.  Next year it is expected to more than double in size.  Class size was always a concern of mine since it would be bigger than what Gus is accustomed to.  The room is set up to be very open, which I think would be very distracting for Gus, but she has a primarily behavioral outlook (Applied Behavioral Analysis background) and believes that his behavior would just have to be modified.  I don’t know that it is a) possible or b) totally desirable to do that in all instances.  There would be less sensory support for Gus as well, and there would be no internet capability.  So the learning program he’s using now would be out the window.

Academically, this class focuses on much more basic skills than what Gus needs, and there is very little emphasis on Social Studies or Science - his two favorite subjects.  She does have a very interesting take on Math instruction, which I plan to do some looking into.  Overall, I doubt his academic needs would be met, and he’d be bored stiff.

As much as I like the teacher, despite our differing opinions, I can’t see Gus succeeding or being happy in that class.  I’m going to bring him in next week (he’ll be out of school anyway) just to see what he thinks of the room.  But I’m about 99% sure that I’ll be fighting for him to stay in his current school next year.  Either that, or I become a home-schooler.

  image by Andre Koehne

An illuminating conversation this evening reminded me that ‘the system,’ in other words, the school system, is really not to be trusted when it comes to what’s best for your special needs child.  Many parents either believe that their school district has their child’s best interest in mind, or they believe that they can’t reject whatever the district is trying to push at them.  Neither is true as I was reminded tonight.

I called to schedule a visit to the local school’s special needs class (the one I said no to last year) and the teacher called me back to set up a time.  We got into a very interesting dialog.  Actually, I quite liked her and if Gus ended up with her, it would probably be okay.  But I’m glad I spoke with her directly.  For one thing, last year after she’d evaluated Gus, she felt that he would not be a good fit for her class (she has since changed her opinion since the makeup of the group changed).  The district at last year’s annual review told me that the teacher did think he was a good fit.

You’re probably thinking, “That must have been an oversight or a misunderstanding.”  Perhaps, but it gets better.

When they emailed the teacher that I may be calling about paying a visit, they told the teacher that I was unhappy with his current program.  Now, it’s possible that they could have inferred that from, “I don’t want him to change schools,” but I’m not quite sure how.

They also neglected to tell the teacher how often he’s been bounced around over the past 3 years - she said that even if he is a good fit, he should stay put or he would just lose another year in re-adjusting to yet another change.  Did I mention I liked her?

So the moral of the story is: whenever possible, communicate with teachers and service providers directly because school districts might say whatever they have to in order to get you to go along with their agenda.

Just got back from an IEP review meeting for Gus to discuss whether or not he was approved to received physical therapy services.  It was clear to all that he needs them, so that was the easy part of the meeting.

Then came the discussion about what the behavioral specialist found.  A while back, I posted about our request for Gus to have a one-to-one aide.  Instead the district wanted him to be observed by this behaviorist.  She saw him once (and I still have not heard from her directly, although I was assured that I would) and seems to be of a mind to think he needs a different program.  Do I sound like I’m bristling just a little.  Hell yeah I am.

So my initial concern was that they would try to move him back to the program he was in 2 years ago.  Silly me - I should have known better.  They actually seem to be gearing up to push him into the program I rejected for this year.  This would be a less structured class with 2 more students in the class.  I bit my tongue, expressed my initial concerns, and promised to at least go see the program.

Here’s the problem I have right now - distractibility and sensory issues are the biggest challenges he’s facing now.  How would a more distracting, more stimulating and less structured environment possibly be a good thing?  Am I missing something?  Oh wait - yes - the main thing: it’s better for their purse strings.

I’m definitely past ‘bristling.’  But I shall play nice and go see their program.  I hope no one’s holding their breath for me to change my mind, though.

I will veer slightly off topic for a moment to say that first I am thankful that President Obama’s inauguration went well!  I’m also thankful that Gus’s school made it possible for the kids to see it.  Gus was excited about it, but his only comment when he got home was that the speech was too long.  That’s valid coming from a seven year old.  My five year old was a bit…disgruntled about having to watch “the bad news” at first, but then became more engaged after I explained, “We have to watch this because it will never, ever happen again. No matter how many African-American presidents we have after President Obama, we’ll never be able to see the first again.”  She seemed to get it!It was an awesome day.

I am thankful that Gus’s behavioral evaluation (evaluation done by a behavioral specialist)  went relatively well, according to his teacher.  He had a good day on Tuesday and didn’t have his rough day until yesterday.  She’ll be back, but at least she’s seen that he can have a good day, and often does.

I am thankful that my buddy Adonya Wong, author of In My Mind, will be here in just a couple of days, stopping for her Virtual Book Tour!  She’ll be discussing a typical day with her son, Nicholas, biomedical interventions she tried and their effectiveness for Nicholas, and other very interesting topics!  Save the date and stop by on Saturday January 24th and see what she has to say about life Through the Eyes of Autism!

And as always, please share your thankfulness below.

Manic Monday prompt from Mo

The other day, someone was asking about tools to help a teenager with high-functioning autism get more organized (I apologize for not remembering who/where this came from).  Kids with high-functioning autism, Asperger’s syndrome, ADHD, and other learning challenges can find it overwhelming and frustrating to keep track of all their responsibilities as they get older and expectations increase.  There are a few tools and strategies that may be helpful.  Some of these I use in my own home office because I seem to have a harder time keeping my own brain straight with every passing day.

Young Students & Pre-readers

When Gus went into kindergarten, he transitioned from an ABA program to a TEACCH program.   Each student had an office, a desk walled in by tall file cabinets that held the student’s instructional materials and files for the year.  The front of the student’s cabinet held his schedule, small laminated image cards to represent each segment of his day (think of PECS cards).  Each card had a Velcro back and the student could remove each task as it was completed.

With the help of Gus’s teacher, we adapted this system for home to help Gus in managing his routine without constant verbal cues from us.  For example, at bedtime, he could put up his cards and then remove each one (bath/pajamas/brush teeth) as it was done, right up to the point of getting in bed.  Until he was able to set his own schedule up, I could do it for him and he just had to follow it.  It was very helpful at the time.

Older students

There are several computer applications that work wonderfully for getting organized.  I personally use the calendar in Microsoft Office Outlook 2007.  But I also spend a great deal of time in front of my computer, so this type of tool is great!  Google offers a free calendar if you have a Google account.  If your child has a cell phone, many of them have some sort of calender function, or information from an online calendar can be imported into many of them. This may not seem appropriate for a special needs student, but it largely depends on the child.  Some students are much better interacting with technology than others.

The computerized calendars may not be practical for other special needs students, so my next best suggestion would be the Flylady system.  I have no affiliation with Flylady, except that I’ve used her suggestions, and even though I fall off the wagon regularly, they’ve helped me a great deal.  She offers a section of her site geared toward kids including tips specifically for students that can be customized any way they need to help get organized.

You can also get creative and work with your child to create the organization method that best suits him or her.  You can have loads of fun with a large desk sized calendar and some stickers, or perhaps your child is tech savvy and responsible enough to handle more sophisticated tools.  How do you help your child learn to become more organized?

  Image from Kickstock Free Images; Prompt by Mo of Manic Monday

Before any of us steps into the  light at the end of the path, there is something that we all should do, we all probably think about, and we all probably keep putting off.  For any family with children, but most especially those of us with special needs children, a will should be very high on our priority lists.  Unfortunately, most of us just keep putting it off indefinitely.  According to a Money Magazine article in 2005,  after 9/11, less than 25% of the victims had wills prepared.

A very basic will, one that pretty much only names guardians and says ’sell all my stuff’ could cost as little as $300 (per person); a fully detailed will might run around $500.  Some attorneys may offer discounts for preparing wills for couples.  You can simply name a guardian (Be nice and let them know you’re doing it first!)  an alternate guardian, and an executor.

In addition, although it may not be legally binding, you can also prepare a letter spelling out all your wishes for the care of your special needs child.  No matter who you choose as a guardian, no one knows your child’s needs like you do, but the guardian would be greatly helped by having as much guidance as possible.  What are your feelings about education?  Medication?  Institutionalization?   The more information you provide, the better.

A small investment and some simple steps could protect your child from landing in foster care in the event of any dispute about who has rights to him or her or them.  Not the most cheery thing to think about, but necessary.  What are we all waiting for?

Here’s my challenge to you: if you are a parent, special needs or typical child- doesn’t matter, and you don’t have a will, before the end of the year, at least make some calls and start the process of having one made.  You’ll feel better when you do.  If you already have a will, when was the last time you updated it?

As the great sages of Poltergeist once said: “Do NOT go into the light. Stop where you are. Turn away from it. Don’t even look at it.”  At least not until you get your will in order.

Thanks to Mo from Manic Monday

From YourDictionary.com : Harvest - noun - 4. the outcome or consequence of any effort or series of events.

This is the time of year when we typically receive the harvest of Gus’s efforts during his first quarter of school: his report cards.  He gets two reports - a district report card and an IEP report.  I was a little dismayed to see that the two reports were very different.  So during our parent-teacher conference, I asked why this was.

The district report shows his progress and ability in very generalized areas.  The IEP shows his progress in the specific areas that have been targeted for this year.  Generally, he’s doing fine.  But the specifics are pretty shaky.  There were several ‘not progressing satisfactorily’ marks, mostly having to do with his ability to focus and attend to tasks.  Yet, the meeting made me feel more hopeful.

After Thanksgiving, his teacher will be implementing computer time into the routine, and Gus will be allowed to complete at least some of his independent work on a computer.  So there will be no need for us to buy him a laptop for school, and as a matter of fact, the teacher would prefer he not use one in school because it would likely become a deterrent to complete some of the other things he has to do during the day - like group work.  That’s fine with me, and I think that any amount of computer time will be a benefit for him.

So come next harvest time, probably around the time just before or after the New Year, hopefully the results on his IEP report will be a little more positive.  At least I am certain that his teachers’ and therapists’ attitudes toward him are positive, and that is always a good thing.

This morning, Gus - the second grader - woke up with a question on his mind: How many zeros in a billion?  How the heck was I supposed to know?  So we tried an experiment.  I had made the suggestion to his teacher that he might be able to focus a little better during independent work if he had a laptop to work on, and I said I’d try letting him do some work on his own at home.  This morning seemed to be as good a time as any.  So we logged on to the Internet, I wrote down the question for him and told him how to do a web search.  Our Kidzui search was fruitless, so I told him he could use the grownup Internet.  Very exciting.

Sure enough, we found a site with the answers - more answers than we could have possibly even thought to ask for.  It was like Christmas morning.  We talked about why anyone would need to use such big numbers, and even a little about how scientists  don’t bother writing all those zeros, but use a special way of writing how many there are (because you’re never too young to know about scientific notation).  And that’s not even the most interesting thing to me, that my second grader now knows how many zeros there are in a quintillion.

At school, his behavior was different.  He wasn’t bouncing off the walls, but instead was just zoning out in his own little world.  It was such a pronounced difference that his teacher wrote me a long note about it.  She seemed perplexed.

But I have a pretty good idea what he was thinking about.  I’d be my last dollar that he was envisioning all those zeros in a centillion.  Wouldn’t you?

I’m feeling particularly thankful today after reading some distressing things…

First, I’m thankful to be married to a Social Worker who has a clear understanding of the DSM-IV, which is the manual of diagnostic criteria for the mental-health field.   It’s hard enough to explain what it is, let alone follow all the complicated requirements for any diagnosis.

I am thankful for not only the brief time I spent as a teache, but for the environment I taught in.  I worked with incarcerated youth, ages 12-17, and most of them were eitehr functunally illiterate or had learning disabilities.  It made the job challenging, but it also taught me how to teach outside the box.  As I struggle to advocate for Gus, it really comes in handy being able to understand the different challenges facing the teacher, and it is useful to be able to come up with little tricks to help him and those who are working with him.

Finally, and this is the really important one, I am thankful that I am fortunate enough to have both my children living with me, safe and sound.  Niksmom posted about Frankie Macias, who has been institutionalized since 1994 - on a temporary placement.  Frankie has suffered horrible abuses, has been denied access to his family, and even though a community-based placement has finally been obtained for him, the Department for Developmental Disabilitiesin New Jersey has refused to release him!

So, please sign the petition asking Governor Corzine to have Franie released so that he might have a chance at healing and living his life.

Have a great night, and please share your gratitude in a comment.

I found out earlier this week that an IEP (Individualized Educational Program) meeting had been scheduled for today and I was expected to be there.  Short notice aside, it occurred to me that since these meetings can happen at any time, today is as good a day as any to post some advice for getting through one of these joyous occasions.  And just to add a caveat, while I am by no means the Great and Powerful Oz of IEP meetings, I have been doing them for roughly five years, so I do know a little of what I write.  However, things will differ a bit from state to state and district to district.

What is this meeting for?

The IEP meeting is usually done when a student with special needs is coming into a school district, or at the end of a school year to review whether or not the student will require services for the following year.  If something comes up during the course of the year, a meeting can be called in order to make changes to the child’s plan.  My meeting today had to do with starting the process of getting physical therapy added to Gus’s program and also reviewing a request for a 1:1 aide.

Who will be there?

This can be the most daunting part of IEP meetings.  I remember the meeting we had just before Gus transitioned into Kindergarten.  There must have been about 15 people in the room - most of whom I had never seen before!  There can be any combination of teachers, assorted therapists, psychologists, administrators, committee chairs…there are lots of people, and you.  It’s probably more comfortable to walk out onto the pitcher’s mound at Yankee Stadium in your underwear, but it doesn’t have to be so threatening.  First, if both parents can be present at the meeting, it makes a BIG difference (unless the parents are at odds).  If not, bring someone with you - a family member, a friend, sometimes you may want an advocate or attorney if you anticipate that you may have serious trouble getting your child’s needs met.  It’s important to remember that regardless of how badly outnumbered you are, it’s essentially your meeting.  And you can have whomever you want in attendance.

This brings up another point.  Sometimes, the people you want at your meeting may not have been invited by the district, and you’ll have to invite them yourself.  I learned this one year when Gus’s speech therapist sent a report saying she wanted to remove speech therapy.  I had to go find her and find out why she would recommend that (she thought the district would deny it) and then make her case for her.  Why?  Because I hadn’t invited her and no one told me that I had to invite her.  So, if there is a therapist or counselor you want in attendance, write a letter to the district in advance and tell them exactly who you would like to see there.  Then let that person know yourself.

In my home state of NY, each CSE (Committee for Special Education) is supposed to have a parent representative, and that person (often volunteers) is supposed to be at the CSE meeting as well.  In five years, I have never once seen this person and I am usually asked to sign a waiver so that the meeting can continue without the rep.  Just be aware, that you might have the right to have another parent who has navigated the system present and you might be able to postpone the meeting, although that might be shooting yourself in the foot.

Be prepared!

I may sound here like I’m recommending that you prepare as if you are getting ready for a major battle.  Well, you kind of are.  We’d like to think that everyone is going to have our child’s needs in mind, and while that’s partially true, everyone present in that meeting will also have their own agenda and their own restrictions.  School districts have federal, state and budgetary restrictions and they have to consider all the other children vying for the same limited resources as your child is.  Teachers and therapists get stuck in the middle trying to please parents and districts, and if they care at all for your child, they’re trying to do what’s best for him as well.  You are strictly concerned with your child’s needs.  Many times, the balance of power will shift because that middle group is like a group of swing voters.  My strategy has usually been to try as much as possible to have a strong partnership with Gus’s teachers.  Then when we walk into the meetings (I make sure all his related service providers are present), we can present a united front.  The strategy has served me well several times.

What if you are in conflict with the school staff, or even worse, in conflict with the district AND the school staff? Make sure you know exactly what your rights are, and you’d probably do well to have an advocate.  The last thing you want is to get railroaded, and as much as I hate to say it, I’ve seen it happen to people.

Two resources that may be helpful are the U.S. Department of Education’s Individuals with Disabilities Education Act website.  You might also contact the department of education for your state, and they will probably have some kind of pamphlet about your rights as the parent of a special needs child.

Once you know what your rights are and where everyone stands, you’ll also want to have a clear idea of what options are available to your child.  What programs are out there?  What services are you interested in?  There’s no guarantee you’ll get everything you ask for, but if you don’t even know what to ask for, you’re at a great disadvantage.

Now, some districts can be funny about letting parents look at programs before the IEP meeting.  I think this is insane, tantamount to asking someone to sit down to a real estate closing without ever seeing the house they’re buying.  Our old district had such a policy.  I ignored it.  The chairperson was very displeased with the fact that I came into the meeting with a program in mind for my child (she was more upset with the school reps than with me) but eventually, we got him into the school.  Don’t do it lightly because you don’t want to be overly antagonistic, but sometimes you may decide that bending the rules is necessary.  You’d get no arguments from me.

There’s an awful lot more to cover on this subject, but this should at least get you started on your road to preparing for an IEP meeting.  If any of my readers can think of any questions or aspects of the process that I should cover more in depth, I’m completely open to your thoughts.

By the way, our meeting today went better than expected.  Gus will probably be approved for PT, but has so far been denied for a 1:1 aide.  But the district has suggested that a behavioral specialist evaluate the environment to see what may be triggering some of the issues he’s having.  While that may not work in our favor, I’m still optimistic at this point.  Oh, and one more point:

Be flexible!

You have to know when to stand your ground in an IEP meeting, like when the district is trying to cut services to your child that you know are clearly needed.  But sometimes, the district might come up with an alternative that you hadn’t considered, and they’re not always wrong.  So go into your meeting with confidence, and know what your agenda is, but then be open to other ideas.  You don’t have to make any decisions on the spot, so there’s no harm in listening and giving every suggestion fair consideration.

Have a great weekend, and please leave a comment if I can answer any specific questions!