My Autism Insights

Despite the fact that it hasn’t gone above 65 in our house yet today, I am still in a surprisingly good mood.  Thankfulness for today:

I am thankful that both my kids did well on their second quarter report cards.  Gus is doing a little better with his IEP goals; out of 27 goals, he’s progressing in about 19 of them.  Last quarter that progress number was much lower.  His academic report is good, especially in Reading, Social Studies and Science.  MM showed great improvement in her writing and is doing really well in math and reading.  Her teacher also called her a “delight” and a “good example” in the class.  Sorry for the bragging, but I allow myself a proud mommy moment once in a while.

I am thankful that Gus is also being given a Principal’s award next week (alright, two proud mommy moments).  Now, he was given an Outstanding Effort award last year and there was an interesting incident with a microphone…hopefully, we won’t see a repeat.  And if we do, I am resolved to just laugh about it.  Those assemblies are often way to serious anyway.

I am thankful that my sister’s friend, who had asked me for an impromptu Reiki healing a few weeks ago, apparently decided to pay me.  She asked at the time and I told her that I didn’t want any money.  But she sent some anyway.  A nice compliment, and always useful!  That was an awesome surprise!

This all goes to show that even in the coldest and bleakest of times, good things can still happen.  Please share your gratitude below and have a great week!

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.

Mary at Bon Bon Gazette and the NJ Moms Blog did a couple of posts on this on this topic that I saw last week, and then I read this comment from a reader to my weekend post:

“I also have a son with aspergers syndrome. Justin is 12 yrs old a very quiet pre-teen.  Who is a 7th grader in Jr. High. My main concern is that the kids at his school has started seeing him as an “easy target”. Justin won’t tell on these kids because he doesn’t want to get people in trouble. He is such a kind hearted boy and wouldn’t even hurt a fly. How can I get him to understand that what these kids are doing to him is very wrong and he needs to get help from an adult to put a stop to this once and for all? Please somebody help me and tell me what I should do as a parent!”

It’s disturbing that bullying is such a prevalent reality for so many students with special needs.  With most kids on the autism spectrum, they may not look any different from their peers, but they often exhibit behaviors or a lack of social savvy that makes them easy targets for bullies.  The harassment typically becomes a serious issue around middle school age and can last through high school.  A conversation with Gus’s counselor revealed that students on the autism spectrum often don’t understand that they are being mistreated; they can think the abusers are their friends and that must be the way friends act.  She mentioned a high school Aspie who would do some pretty outlandish things at the urging of other students because he didn’t realize they were mocking him.  Another child began to view the physical abuse he was receiving at school as a ‘ritual’ and it fed into his perseverative tendencies.  He would actually seek out the bullies because the abuse became his pattern until he was hurt and the school nurse intervened.  The victims will usually not speak up for themselves, and the bullying may not go unchecked until there is some severe incident or the victim’s behavior begins to change and a parent, teacher or counselor takes notice.

Schools are becoming more responsive to these incidents because the situation has gotten so bad.  Although there are federal laws (Rehabilitation Act of 1973, Americans with Disabilities Act of 1990) protecting the disabled against harassment in any educational facility that received public funding, on a practical level, it doesn’t offer much in the way of prevention.  So what can parents do to protect their children from being tormented by their peers?

Be Aware

You can’t be with your child all the time, but you can be aware of any changes in your child’s behavior or appearance.  Notice if your child is coming home dirty, with torn clothing or with bruises.  Changes in behavior may include reluctance to go to school, an increase in behaviors that indicate distress (like stimming), changes in sleeping or eating, flinching, aggression or out-of-the-ordinary withdrawal.  Also, don’t be afraid to ask questions of teachers and classroom aides to stay on top of what goes on during the school day.

Your IEP as a Tool

While you can’t directly have antibullying written into your child’s IEP, there are goals that can be written in to help reduce the risk of bullying.  Goals that specifically work to increase social skills like recognizing social cues, assertiveness, or avoiding and handling bullying can be helpful.  In addition, it may be possible to request services to prevent bullying such as staff monitoring in areas where bullying is likely to occur.  If bullying has or is occurring, counseling support should be made available.

Educate the Peers

Emily at A Life Less Ordinary has had to deal with bullying and came up with a fantastic idea to educate her son’s peers about her son so that they would have a better understanding of some of his behavior.  If Bullying Prevention programs at schools took a similar approach and educated their students about autism and other special needs, it might help reduce the ‘otherness’ of the special needs students.  See what your child’s school or district might have in place for conducting this kind of diversity training.  If nothing’s available, be proactive and try to get something started.  And remember that kids who are neither bullies nor victims can play a role in bullying prevention as well by being encouraged to take a stand against it, as noted in the Autism Asperger Publishing Company’s Winter 2006 Newsletter, which was devoted to the issue of bullying.

Who Should You Take the Issue Up With?

As much as parents want to protect their child’s well being, it is possible to make the matter worse if you address the bully directly – it can just cause the situation to escalate.  But you can’t ignore it either.  Likewise, contacting the bully’s parents might have an adverse effect.  If the incidents occur in school, start with your child’s teacher.  If that doesn’t help, try the school principal.  In severe cases, or situations where the school administration can’t control the situation to keep your child safe, remember that the law is on your side if you have to contact local authorities.  If you still don’t feel that your child is safe, home schooling may be an option to consider, at least for a while.

Other reading

Some available resources:

Preventing Bullying of Children and Youth on the Autism Spectrum

Bullying (and Asperger’s Syndrome)

Bullying Among Children and Youth with Disabilities and Special Needs

NAS: Bullying: A Guide for Parents

And The Gray Center has several books and a DVD available on the topic of bullying as well.

If you have anything to add, or if I’ve misstated something, by all means, add to the discussion of this very important topic.

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.

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!