Issues and questions to discuss when you go to your next IEP meeting

Image: Flikr creative Commons- Puuikibeach

We are on school holidays here in Australia so I thought I would sit and write a reflection on Individual planning meetings.  I know this blog has many readers who are parents of secondary age children who have gone through the IEP process.  Therefore I've put together a list of items to consider and discuss.  Hopefully this will empower you when you attend your next planning meeting.

I’m a special education coordinator at a college here in Sydney and also an advocate for inclusive education.  I thought I would write this post about getting it right in the Individual Education Plan (IEP) meeting.  I see the IEP as a plan for the year ahead.  I like to use the Engineer/Architect analogy when describing my approach to the IEP process.  The Architect has the technical knowledge of the systems and the workers. He/ she will know what will work within the system.  Like all professions you can sometimes get ridged Architects (special Ed coordinators) who can only work through one model and you can find remarkable Architects who can create a harmony between the clients (parents, students and school) and the fruition of the plan.  Therefore I find I get the best results from parents who come to the table prepared with a clear set of goals and willingness to problem solve and discuss strategies. 

It is crucial that this plan is in place, especially in a secondary school where students may have up to nine teachers.  I find having to deal with so many teachers’ expectations, systems and styles causes considerable stress and issue for students with Autism.
 

I find most parents of students with autism are excellent advocates for their children and are an excellent resource for strategies.  For example they know exactly what the best blockers are for managing their child’s stress; they know exactly what things will trigger anxieties and what things will inspire their children.  In an ideal situation the conversations are open and look to coordinate the best possible strategies to support the student.  In some cases however parents come up against that ridged architect (Special Ed administrator) and the IEP process becomes a dictation of what the school has to offer.  Therefore here is a list of considerations you should raise within an IEP meeting to enable you to be a better advocate. 

-          What targets do we want to achieve this year? It is important that a set of targets or goals is developed.  This will enable you to measure progress even if it is very small.  A goal may be as simple as saying ‘good morning’ to the homeroom teacher to as complex as self-managing anxiety through a behaviour strategy. 

-          What support is going to be provided?  It is always important that the student has someone who they can use as a go to should they feel anxious.  Will there be in class support?  What classes are going to be supported and what classes are not?  When exploring support it is important the student be consulted.  Thrusting close support upon a student is not always the best approach.

-          What happens when things go wrong? What safety mechanisms are in place when issues arise?  Does the school have a quite ‘safe’ place for the student to go to during break times or when they cannot cope.  What happens when the student has a meltdown or refuses to come to school?  The plan is never set in stone and should always be open to change if things are not working.  

-          Who do I contact when things go wrong?  I find that in many cases students with autism will bottle up much anxiety and will wait until the get home to ‘explode’.  A call from a parent will sometimes be the only indication that something has gone wrong.  It is important the you have a school contact who is available and willing to listen.  A classic example I can think of is a call I had this year that averted a meltdown when a parent called to tell me her son had forgotten his apron for cooking.  I was able to catch the boy in the morning and give him one to borrow. 

-          How and what information is disseminated to teachers?  This is important as there is nothing worse than going to a parent teacher consultation to have teachers surprised that the student they had in their class had Asperger.  Thankfully this is rare but unfortunately I’ve known it to happen.  It is also important all teachers are using the same strategies and understand the student. 

-          What curriculum strategies are going to be put into place to support the student?  I have a problem at the moment with a number of the students with autism who also have an intellectual disability.  The students love coming to school and the parents are so happy with the placement as it is caring and supporting pastorally but academically it does not meet the needs of the student.  Whilst as a parent you will not be familiar with the curriculum it is important to ensure the curriculum sets high expectations and students are not left sitting at the back of the class. 

-          How are outside agencies incorporated into the program?  It is common for outside agencies such as psychologists, Occupational therapists, counsellors, Speech Therapists to be present at the meeting.  It is worthwhile exploring how these are connected to the school.  If the support is external it is worth ensuring the school has a relationship with the outside support to reinforce or support strategies. 

-          What other programs are going to be put in place:  social skills groups, anxiety management groups, travel training, school to work transition programs.  It is important that these are explored

I’m sure there are other points that are discussed but this is a good start.  As you can see the meeting can take some time especially if a number of teachers and specialists are involved.  I’ve only been on the teacher side of the table so I cannot speak for parents so any additional advice on what works would be a great resource.

I also write a blog called Australian Inclusive Education it seeks to explore research and strategies for promoting Inclusive Education.

Apparently I wasn't as okay as I said I was

Last week, over on my personal blog, I wrote a post about assessments. About how I'm not going to let it get to me this time. About how I know that assessments only matter to the ones who are doing them, and that I'm going to be all zen, and barely even look at the results. They are a necessary part of getting access to services and that I know what my son is capable of, no matter what some standardized test says. Heck - I should want him test even further behind so we'll qualify for more! Okay, I didn't actually say that last part, but I'm pretty sure I was thinking it when I wrote that post. Then Friday happened.

Moe is aging out of our Early Start services, so he's been having exit assessments from the Regional Center and entrance assessments by the school district who will take over. On Friday, one of the psychologists from the RC came to observe him during one of his therapy sessions. Our ABA program director accompanied her. So the poor kid is going about his business with four adults staring at him. And of course he doesn't want to do much of anything. At one point, the psychologist - we'll call her Jennifer because that was her name - looks at me and says "Does he have any words?" Like she's never seen an autistic kid before. So she watches for a few more minutes, makes some comment along the lines of "Well, I've seen enough" and leaves. I felt like he, and I, had just failed some test.

Then, our program director pulls me aside and wants to warn me before our upcoming exit meeting that Moe's scores on the social/cognitive part of his assessment have gone down. I probably could have handled that, except I had just heard the same thing from his speech therapist the day before. We had our explanations: we started with a different baseline, understand more of where he really is right now, blah blah blah. But what I was really thinking was, "So what have we been doing the last year?" What has all the struggling and crying (mostly me), hiding in the closet (mostly Moe), 6 hours a day of people in and out of my house, putting my dog on Prozac, and me never getting out of the house been for? According to the tests, nothing. Less than nothing.

After lunch, I brought Moe to his school district entrance assessment. They had already met with my husband and I and asked us all the same questions we've answered 17 times but I still never really know the answers to. (Does he understand it is dangerous to run in the street? I don't know, I've never let him try. It this is a trick question?) This time, I just dropped him off for an hour. When I picked him up the school psychologist told me that they couldn't get through the whole thing and that I would have to bring him back again this week. And I'm not sure why, but that was the last straw. I lost it. Not right there in front of the school secretary and the six year old looking for a band-aid, but later, once the kids were finally in bed and I could get in the shower and safely hide from anyone who might suggest I need an assessment myself.

Jen also writes at her personal blog, Anybody Want a Peanut, and at the Silicon Valley Moms Blog.

What's The Point of School?

The following is in response to a comment made on the last post regarding homeschooling for autistic kids. It refers to a comment from a special education teacher. Go read it, first. Califmom's response needed to be its own post.

Sorry to be petty here, but if the argument to send my child to school is being put forth by a teacher who has more grammar/spelling mistakes in his comment than content, I have a difficult time swallowing that pill.

However, I'm a bigger person than the product of my (formally schooled) environment. So, I'll bite.

What I read in Mr. Black's comment is that my son should attend a formal, school setting in order to experience poor treatment by his age mates and failed social situations, which will then require the support of a team of professionals.

This scenario is seen as superior to providing my child with social experiences outside the academic setting, where stress is lower, and success is higher, which then result in positive experiences in the building blocks of his social competence.

Underlying all of this is an assumption by Mr. Black that I, as the parent of the child, check my opinions at the door, trust the system, and let the professionals do their job.

Mr. Black, just so you know, we were not always homeschoolers. We didn't even choose this path, initially.

In fact, for over 7 years, my children attended an expensive, award-winning private school that touted its ability to address special needs.

My personal educational background is in child development and elementary education.

We did not arrive at our decision to homeschool because we had some idea that it would be a great way to exclude our child from the artificial construct we currently call our schools, an institution largely existent as a remnant of the Industrial Revolution and the requirement that we produce a society of factory workers with a similar world view--followers, non-thinkers, non-questioners.

We arrived at this decision via a difficult path, but we are beyond pleased with the results we see in our children. More, our family and friends are impressed with the change they see in our children.

You see, nowhere else are we grouped in such an artificial fashion as we are in a traditional school setting. Children are grouped by age, and often ability (or disability), and then expected to derive value from this socialization.

I have yet to find a workplace (the argument most put forth for a school-based education is to 'get a job') comprised of same-age coworkers. Have you?

Aside from prisons and psychiatric wards, nowhere else do we lock people in for the day and attempt to control their behavior. Seems odd that we expect only 1 of 3 of those scenarios to be appropriate for all members of our society.

I want more for my child, and I have the ability to provide it. Maybe it's not what everyone can provide their child. Maybe it's not the right thing for everyone, but it is what is meeting the needs of my children and our family. It's also the beauty of living somewhere that provides us this freedom.

If you really want to boggle your mind, Google unschooling. That's what we do. I'm guessing it'll make your head fall off, but maybe it will just open your mind.

Because of her son, califmom knows more than she wants to about Asperger and Tourette Syndromes. She doesn't think autism needs to be cured. She does think that autistic spectrum disorders are more likely orders--another way of being in this world. Visit her at califmom and califmom homeschools.

The Dirty Secret Schools Don't Want You To Know

Over the years, I have witnessed an exodus of sorts when it comes to the education of friends' children. More and more parents of children with autism and Asperger's Syndrome are choosing to homeschool. We are the well-kept dirty little secret that your school district doesn't want you to know: often our children can be better served at home than in the school system.

I would have never said such six years ago. I was a died-in-the-wool PTA, room mom, get into the system and change it, agent. But one horrific year with my son's classroom (through no fault of the teacher) and I became a true believer. I figured I couldn't do a worse job than the school, and I might even be an improvement. Besides, my son hated school, to the point I was literally dragging him there. Something had to give.

And now? I homeschool all three of my children, and this is our 5th year. Two have been diagnosed with high functioning autism, they are 7 and 10 respectively. My oldest is going on 15, and though she has never been diagnosed, she has many of the deficits of Asperger's, and is also academically gifted. Her father is a computer engineer, and is most likely also on the Spectrum. (he was never tested, but off the record, our psychologist said so) So, you do the math...

In any case, bringing my children home has worked out wonderfully for us. Homeschooling has allowed me to tailor each program according to what works for each child. My 14 yr old, who went to school for 6 years benefits from a very academic program. She enjoys the structure and it works. My middle guy, at 10, is the one I walk the line with. He isn't unschooled, but his academic structure would, at first glance, seem more relaxed. It is still very scheduled, however. But we benefit from frequent breaks, sensory diet and multisensory approaches. I can choose activities that he enjoys, and we keep work periods short and focused. He can take a break for pogo stick or OT work, as needed. My littlest one, at 7, is the one that learns best through games and Mom Time. She needs one-on-one (as does my son) that she wouldn't get in a classroom. She often has to be taught a concept repeatedly before she gets it.

My middle guy is also dyslexic, which makes it interesting, and I am thinking my littlest may be, as well.

As for socialization...which is a joke anyway... but still. We have found with regular play dates, activities and park outings, my children do just fine. There is more time for preferred subjects (my 14 year old taught herself to both play the piano and knit, because she had more time than if she was traditionally schooled.) We have more time (and funds) for field trips and activities. While other kids are sitting in a classroom, mine are out learning in the world.

There is a park day we attend and have for years. The attendance is large, with many different ages and multiple abilities. There are several kids from all ages that are on the spectrum in varying degrees. It is a very welcoming group. Truly, it was the best decision we ever made for our family.

When my son ended 1st grade, he barely read, was behind in math, his writing was still reversals (though he is left handed, so that made it worse). I would literally dress him like a doll and drag him, kicking, to the public school. He would sit under the teacher's desk, or make games. His aide was useless, only serving to keep him from eloping from the classroom. His work was all sent home. I was already homeschooling, and my son was in the school system!

He is now in the 5th grade, and reads at grade level. His math is also at grade level, or just below. He is above in Science, History, Geography. His writing and penmanship has improved 10 fold. and most importantly, he loves to learn. I have found that learning is a broad term for what we do every day. Mythbusters is learning and exploring Science. Going to the Arboretum is a chance to discuss the environment and botany, as well as the food chain. In fact, every activity has inherent learning in it...you just have to find it.

The most important thing to remember about homeschooling? It isn't something you do. It's something you live. And there really is no wrong way to do it. You can, and your child can... and if it doesn't work, keep tweaking. Also, what your state standards may find important, you may find doesn't mesh with your family. That's ok. I have found that as we go, my kids pick up information I didn't formally teach. And the one thing I want to equip my children with? The ability to find information.

The freedom I have found, as well as the free time away from IEPs, discipline meetings and just general headache is now energy I can pour into helping my son love learning. Less time is spent arguing over what the schools think he needs and more time is given to what he actually needs. We have personalized his goals, and we make sure he reaches them. There is no fighting with autism experts who insist my son is meeting goals that are either too broad, too easy or just plain wrong. I am in control. And my children are the better for it.

That, to me, is success.

T. is a writer, wife and mother of three children, two who have high-functioning autism, one who has undiagnosed Aspergers. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents in support as a privilege.

She is the Special Needs Editor at typeamom and her own site, Send Chocolate reflects her passion for her children and autism. The Autism Sucks blog is her brainchild.

Am I Doing It Right?

I feel so fortunate that Bacon is 'high functioning' and that he appears to everyone to be a 'normal' kid. I am also beyond blessed that our school district is so great at offering the services that he needs and has such excellent teachers for him. 

I recently returned to work full time though, and am not as involved in his day to day (read here every single second of everything that is going on) activities. I am worried that this is going to cause all kinds of trauma and distress to him in the long run though. The guilt is sometimes horrific. 

Also we are still having all kinds of issues with sensory potty training issues. Part of it is attributed to age I know, but then part of me feels like this will be a never ending battle because of the Asperger's. I cannot remember the last time we went a full day without a pee or poop accident. We take away privileges, we remind him endlessly to go, and still nothing works. He is about 75% trained and has 3 months until he turns 5. I wouldn't be so worried if he wasn't going to mainstream kindergarten, where peeing your pants can turn into some kind of ridiculing nightmare. 

He also still won't sleep in his own bed. He starts there, but always ends up in our bed. We have tried the Super Nanny method of escorting him back to bed 7,952 times, we tried weighted blankets (which freaked him out) sticker reward charts, money, begging and nothing works. I get up at 4am so the constant up and down just doesn't really work for me because I have to sleep in order to be alert for work!

Did I do it wrong by not getting him into OT? Did I do him a disservice by not keeping him in psychotherapy with the lady that was by the train tracks? (Trains are his thing, and every time a train went by he went crazy.) Or am I doing okay, by sort of letting him work it out on his own with school and seeing how it goes? 

He has made so much progress! He can have a conversation with people, he can recognize people's feelings, he can write his name! He is adding! He asks me how MY DAY WAS! Things I NEVER thought I would see...and I know that some parents of kids with Asperger's and Autism will never see. 

I still worry that I am doing it wrong, that I am not doing enough for him. Am I crazy? Or is this what being a mom is like? 

Mrs. Tantrum has a 4 1/2 year old son with Asperger's. She has been married for 11 years, and works full time outside the home. To read more about her crazy life,  her thoughts about random things, Coffee, Anxiety and more, head over to her blog Momma's Tantrum. She posts there every day, or pretty darn close to every day. 

MY FIRST POST - Autism and Education

Some days you feel as though you are winning. Other days it is as though you’re being bombarded from every angle and you just cant do anything right. I’m on the phone to a mum informing her we have had some problems with her son kicking another student. I like to get in early and pre-empt the return call, as I know mum will be on the phone as soon as her son gets home and tells her the details. Mum understands the situation and I book her in for an interview tomorrow morning. We have come a long way together. From the days of school refusal because a student in his class didn’t share the same opinion he had on a computer game. To refusing to eat anything at school because the other kids called him “cheese disease”. I’m relatively new to the world of Autism and Asperger. When I was at University they prepared you by sending you out to a Special School Unit to get some hands on experience. They had you read scholarly article after article, written by boffins squirreled away in universities, on ways of managing students with Autism. I’m sure I wrote over 30 000 words outlining how I would meet the students needs, all backed up with reference to the latest developments and theories. Something you quickly learn when you meet a child who has Autism is that they are individuals. Generalisations go out the window with many of the theories and interventions. I have come across some students who are happy to shut themselves off from everything. At lunchtime they escape, with their blazer over their head, in a book or a hand held computer game. Whilst others want to be out on the football field or hanging around the staff room talking to people. Some are very self absorbed in class and are reluctant to share. Whilst others, accidentally touch on a topic of interest and they could talk everyone's ears off. The common factor amongst them all is their social interactions, or difficulty with. If you have a child on the AS spectrum and you’re reading this then you are all too familiar that children with Asperger and to a varying degree Autism are very self- absorbed. Everything is about them, to the vexation of their peers. I find it difficult to actually define my job title at times as I do so many different things. I am Head of Year Eight and Nine and I teach History. I help run our learning support department and assist the school’s Special Education Needs Coordinator. Basically I’m the go between home and the teacher. Being caught in the middle is like acting out the fable about the man with his son and donkey, going to the market. You can’t keep everyone happy. A line from a parent I spoke to last week sums up the issue “I am all for children with Autism coming to the school, but where do you draw the line when it starts to impact on our kids. How many exceptions are our children supposed to make”? This is like saying "I am racially tolerant but id hate for an ethnic family to move into my neighbourhood". Start to read through the stories i post on my blog and you soon get a picture of the parents im talking about. Something that still stumps me when dealing with Autistic students is that nothing is ever straight forward. The most notable case of late is of a student in Year Nine who has Asperger. I made reference to him in my opening paragraph. “Cheese Disease”, the name kids called him last year, and the reason he didn’t want to go to school. I was appalled at this and jumped on the students straight away. Later I hear that they called Andy this because he was bragging about the fact that he could eat his packed lunch of cheese sandwiches instead of the compulsory school dinners, which the students hate. I find that Students with Autism are often coupled with other disorders, the most common being Obsessive Compulsive Disorder (OCD). In Andy’s case he will only eat cheese, Jam filled biscuits and potatoe smiley faces (of a particular brand, mum has to keep old packets in case the packaging changes). This plays havoc with his health. When I tried to explain to the Head of the Kitchen why he wasn’t having school dinners, he wasn’t having it, saying, “well if I was his parents I’d just say eat it or have nothing”. There is no arguing with these people who have such a shallow insight. I didn’t bother to tell him that his mum had tried this and the result was Andy being admitted to hospital after not eating for three days. Now back to the issue of the complaining parent. Andy had been given two pet rats for his birthday and he had taken photos of them in to show his classmates. Andy persists with showing the pictures to everyone whether they want to see them or not. The next day I get a phone call from Andy’s mum saying Andy is refusing to come to school. I have her bring Andy in and she tells me the kids have been teasing him. They said that they didn’t like his rats. They said that he looked like his rats. They said that rats are vermin, so Andy must be vermin. I’m actually surprised the Year Nines know the word vermin but this is what Andy’s mum says. I attempt to get to the bottom of the story as I’m shocked to hear that bullying had taken place. I’m more shocked at the kids saying these things. As thankfully, bullying is quite rare at the school. I take one of the students from class and question him about the comments. He freely admits saying those things to Andy. This makes me angry. I begin to question why. It emerges that Andy constantly bragged about the rats and at every moment he had the picture out showing people. When someone said the rats were vermin this only fuelled the bragging. When someone said, “put the photo away I don’t like rats”, this only made him get the photo out more. Eventually the comments had come from pure frustration. Now here is my problem. The names were quite hurtful and did constitute bullying. But at the same time they had come as a response to the behaviour of Andy. I called the parents of the student’s at the centre of the bullying accusation and I was met with the response. “My son has an aversion towards rats so I can defend his actions”. I could also see the parents and students’ point of view. A Year Nine student hasn’t developed the social decorum to hold back on insults when faced with frustration. Their response to the bragging was to reply with an insult. For Andy this is confusing as he doesn’t see his behaviour as bragging and can’t understand the response the other students have to something he sees as deeply interesting. So here develops another problem. None of the other students want to be around Andy because he is annoying and if they say anything to him about how annoying he is they will get into trouble. Compounding this Andy knows this also. So he does not want to tell on anyone even if he thinks they are bullying. This is just one incident this year with one student. The school I work in is in the Independent sector and draws students who would benefit from a smaller setting. Over the past two years our clientele with additional needs has grown exponentially. 90% of the students have some form of learning difficulty and approximately 20% are statemented. For those unfamiliar with the U.K. system, Statementing is a process of identifying need’s and provides funding based on that need, so the students can attend mainstream schools. As you can imagine the people who hold the purse strings and give statements are tight and many parents especially the ones that are not well educated or familiar with the system miss out. This is a whole other issue and I wont get into it at this stage. In the U.K the fazing out of special schools has meant that SEN students are integrated and have access to the same education and opportunities as all children. Most schools have a special education coordinator and a team of classroom assistants. To give you a scale of the support we have 35 members of teaching staff and 26 learning support assistants. Many old teachers here despair at the influx of SEN students we take in, but looking at the successes we have it can’t be denied that the small setting with adequate support is the way to get the best out of these kids. I look back over my post now before publishing and i hope it does not offend. I hope parents can see the dilemma when faced with integration. My next post here will be about a boy I'm trying to help who says inappropriate comments all the time. Help with this one will be much appreciated. so stay tuned. Matt writes a regular blog of his own about his teaching at Trials In The Life of a Teacher. Feel free to make comments and offer him advice. On the same hand if you need advice on education and Autism feel free to drop him a line.