The 5 Don’ts of IEP Meetings

Whether a veteran or amateur special needs parent, we all get that “deer in the headlights” look as our child’s IEP meeting approaches. From the moment you walk through the door to your child’s IEP meeting, a tower of paperwork containing all of your child’s struggles, delays, and symptoms quietly awaits you. All of the fears that you have buried deep-down in the belly of your subconscious are suddenly summoned out into the open, to be confronted and discussed among a group of professional strangers. If that’s not a recipe for an emotional overload, I don’t know what is.

While there is no question that IEP meetings are emotionally heavy experiences, I’m here to tell you that it is possible for you to leave your child’s IEP meeting a little lighter than you walked in. And it’s really not that complicated. The best advice for mastering the fine art of negotiation is not found in written law or college textbooks, but rooted in the same logic taught in kindergarten. When in doubt, always go back to the basics.

Don’t Bring Your Baggage

For the IEP veterans, maybe you’ve got it all down by now, or maybe past experiences have left a bad taste in your mouth. If you’re a newbie, you’ve heard the horror stories and you’ve read the articles. I didn’t fully grasp the magnitude of these three little letters myself until I walked into my first IEP meeting.

Whether it’s your first or umpteenth IEP rodeo, the most fundamental aspect of success in the IEP process is your attitude. I once read an article offering IEP advice that suggested parents wear sunglasses to their child’s IEP meeting so that the other members of the IEP team couldn’t see them rolling their eyes. While this is obviously a joke, it represents an attitude that needs to be checked at the door.

You wouldn’t want your child’s IEP team to take out the frustrations of their previous IEP meeting on your child’s case. So why would you take your newfound apprehensions or deeply rooted disappointments out on your child’s current IEP team? Even if the same players from a past IEP are involved, it’s a new game and an even score. Walk into your child’s IEP meeting a blank slate, with an open mind and an equally open heart.

Don’t Be a Hero

You’ve done your research and you know your child’s needs better than anyone. Why would you ever need the assistance of a child advocate? And who’s got money for that?! These are good points, but they aren’t actually mutually exclusive to going to your child’s IEP meeting alone.

While you clearly know the particular needs of your child like the back of your hand, unless you’re an attorney, you don’t know the ins and outs of the IEP world. Heck, even if you are an attorney, unless you work within your child’s school district, chances are you still don’t have the advantage that a child advocate does. There is no question that there are relationships at play in the special education field, as there are in any line of work. When you are working with someone who knows these dynamics, it can only help you.

You may have the perfect speech planned, complete with solid facts and a tiny violin to accompany them, but with a child advocate representing you and your child, you probably won’t need to resort to your epic monologue. The reality is that sometimes–a lot of times–the simple recognition of small technicalities or report errors can ultimately get you further in negotiations than any crowd-pleasing performance. We know our children; we don’t know the red tape and we don’t want to. Some things are best left to the professionals. 

Even if you think you can’t afford a child advocate to represent your child, most child advocates–dare I say all the good ones–offer free consultations in which they will review your child’s case and offer you their advice and how they would approach your child’s case. It’s free, take it. Don’t be a hero.

Don’t Settle for Less

When it comes to your child’s education, aim high. Don’t think anything is off the table in an IEP meeting because, really, nothing is. The IEP team may tell you that what you’re hoping for is not feasible, but if you’re not comfortable with the one-size-fits-all menu being offered, pleasantly ask to speak to the manager. In other words, move up to the next level in your district’s authoritative ladder.

While mediation, a state complaint, or due process can seem like a lot of extra work and stress, it’s even more of a pain for your school district. Half the time, they are eager to rid themselves of you, so occasionally they’ll throw you a bone and accept their losses. Shoot for the moon and even if you don’t quite make it, you’ll land among the stars. 

Don’t Jump the Gun

Even if the terms reached at your child’s IEP meeting seem like a great fit for your child, there is no reason for you to feel pressure at the end of the IEP meeting to formally agree or sign the IEP plan. Most states that require a parent’s signature (of agreement, not of attendance) allow parents 30 days to sign and return their child’s IEP plan. States that do not require a parent signature on an IEP plan have designated waiting periods before a child’s IEP is implemented, giving parents ample opportunity to file a formal dispute. In either case, you should never feel obligated to sign or agree to an IEP plan at the IEP meeting.

The stress inevitably induced by an IEP meeting can make it difficult for you to discern between a premature desire to complete the process and a true satisfaction with the proposed terms of the IEP plan. However, as you know, agreeing to an IEP plan is not a decision to be made lightly. With the exception of a formal amendment, the specifications agreed upon in your child’s IEP meeting will define their educational experience over the next year.

It’s not a blowout furniture sale; there is no bonus prize offered for signing on the spot. There is also no shame in taking a few days to let it all sink in. Talk to your family and friends, get a good night’s sleep, and agree to the terms of your child’s IEP when you are clear-headed and confident in your decision.

Don’t Be a Jerk

People so often underestimate the “human factor” when it comes to the intricate nature of negotiation. You can prove valid points that support your agenda all day long, but a sincere smile can get you further than any fact can. People are people, and at the end of the day we all want to be treated with respect. Be someone who you would want to work with.

Remember that the faces on the other side of the table belong to real people. While they have budgets and quotas to adhere to, they are also educators and parents themselves, and they likely got into this line of work because they care about children. Until they prove you wrong, try to give them the benefit of the doubt.

Your child’s IEP team will be far more eager to accommodate your vision when you are pleasant, receptive, and respectful. The grace and dignity in your heart will prove far more valuable than the case studies and scholarly journals in your briefcase. Be confident and bold. Be your child’s fiercest advocate. Don’t settle and don’t act with haste. But above all this, be kind. You will be opening more than the lines of communication; you will be opening the door to your child’s brightest future.

School Creates a Beach for Autistic Students

A school in Devon, U.K., recently converted its unused outdoor space into a beach. While there’s no ocean, the courtyard has been filled in with 23 tons of beach sand and populated with pails, shovels, and beach balls. Like a giant sandbox, the space also includes a couple of seated child-size diggers. There’s also a trampoline.

Staff at the Longcause Community Special School in Plympton wanted to create a space for their students—who have autism or other complex learning challenges—to learn and play. Although they’re not located very far from the actual beach, few of their students ever go there, due to a variety of logistical and/or other issues. So, teachers and teaching assistants, along with some student and parent volunteers, worked over the summer holiday to ensure the sensory-friendly environment would be ready for the new school year.

The children are already enjoying it. Teacher Toby Clark told the Plymouth Herald that the sensory area isn’t just letting the kids get outside; it also presents many learning opportunities. This includes working with shapes and writing in the sand. Many children also find it soothing to walk in the sand or simply let it sift through their fingers.

He went on to say, “This is a really unique feature and we are really pleased with it…It is great to see the kids enjoying it too. It was a gamble and we are so thankful it has paid off.”


Is There Really Such a Thing as a ‘Silent Prom’?

I admit it—I binge-watched “Atypical.” And, while I recognize there are both fans and critics of the show, I’m sure you found the idea of a “Silent Prom” as fascinating as I did. In fact, I loved the idea so much, I was immediately curious to know whether this was “a thing” in the real world.

It turns out that it is, and it isn’t.

There are several entertainment companies that host weekly “silent discos” (also called quiet clubs), mainly in big cities such as New York City. At these clubs, customers each receive a set of wireless headphones, just like the promgoers on “Atypical.” However, the clubs have three DJs spinning music on three different “channels” and the dancers can tune in to any of the three (making it a competition between the DJs for the most listeners).

Companies like SoundOff, Silent Events and Hush Concerts rent out wireless headphones and audio equipment for various occasions, including college dances, but at a cost that’s likely prohibitive for most high schools.

While it appears that the idea of a silent prom is currently mostly a Hollywood dream, schools can still host sensory-friendly proms, like the Shine! Prom. Or do what these high schoolers in Georgia did: They put on a second prom with low music and no bright lights so that a schoolmate who suffers from seizures could attend. Inclusion at its most caring.

The Top 10 Things the Best Teachers Do

I love teachers. They don’t get paid what they are worth, they aren’t supported enough financially (and often emotionally) by their schools, and they have to deal with parents. I don’t envy them.

Every year I write a long letter to my son’s teachers. I also include a Starbucks gift card with it. From the very beginning, I want them to know I am on Team Teacher and that I want to work with them to make the year a good one for everyone. For the most part, I’ve been lucky to have worked with some talented and thoughtful teachers.The best all had several things in common.

Here is my Top 10 list of things that the best ones did that really helped me and my child. The best teachers:

  1. Listen to me and ask questions. They acknowledge that I am the expert on my child and come to me whenever they have a problem and don’t know how to address it.
  2. Are the ones that validate to the parents that it is hard to raise a special needs child. And they recognize that even the kids who are best behaved in school often lash out once they get home.
  3. See my kid for who he is outside of the autism. These are the ones who still come up to us years later for hugs. They love my child, and I love them for that.
  4. Keep me informed about issues in the classroom, even the small ones, instead of waiting until a major incident happens.
  5. Come to the table with ideas. It’s hard when teachers always ask me for extra ideas. Especially when I don’t know what they can or cannot do. The best ones do research or have years of experience to fall back on. This is important, because my child won’t be the only child with autism that they will have to work with.
  6. Tell me about the good stuff, too. This, so much! It makes my day.
  7. Let me know right away if it’s good news or bad news. Every time I get a call or email, or see a teacher walking with my child out of school, I automatically think the worst. It’s comforting when I know right off the bat if bad news is coming.
  8. Adapt their style of teaching and communicating to their students to meet each child’s individual needs. These are the teachers that will do sticker charts or other motivational tools to help my son stay on track for the day.
  9. Have a clear set of rules that are also flexible to meet the needs of each student. These are the teachers who have clear classroom behavior expectations, but make room for redirecting and giving a child the chance to turn things on their own. Especially during unstructured time and during transitions when kids can have the most problems. They usually use positive reinforcement instead of punitive measures of classroom control.
  10. Are the ones that show up every day to teach their students, inspire them, and love on them.

I can’t thank teachers enough for all of their hard work and dedication. There have been a few amazing teachers in my son’s life that I will never forget. They were there for me in the hard times with love and support, and without them, I don’t know how I could have coped.

New York City ‘Detective’ Program a Hit With Kids With Autism

If you’re planning a trip to New York City, be sure to add a stop at the New York Transit Museum in Brooklyn to your itinerary. The museum, open since 1976, has exhibits and collections featuring all things to do with public transit in the Big Apple, including the evolution of the subway system, part of a city bus where visitors can take the wheel, and a scale-model collection of trolleys and work cars. It is located in a former subway station.

For the last five years, the Transit Museum has also had a “Subway Sleuths” program for children in grades 2-5 on the autism spectrum. In 2016, the innovative program won a National Arts and Humanities Youth Program Award.

Meant more for locals, Subway Sleuths is an after-school program that “uses a shared interest in trains among kids on the autism spectrum as a means to encourage peer-to-peer interaction and develop social skills and confidence through goal-oriented sessions,” according to the museum’s website. Participants work in pairs and collaboratively in groups to solve mysteries in the museum’s subway station exhibit, using clues and walkie-talkies.

According to Regina Asborno, deputy director of the museum, “It’s all about taking turns and communicating, but we layer it all around transportation, which is something they love.”

Space in this program is limited to 36 children, and all candidates go through a screening process. “Semesters” run in both the spring and fall, and scholarships are available. Parents of past participants attest to the social skills that their children gained, as well as new friendships and increased confidence in communicating. All sessions are run by a Transit Museum educator, as well as a special education teacher and a speech-language pathologist who have been trained in ASD support.

In addition to the Subway Sleuths program, people with ASD are also attracted to other features of the transit museum, including the interactive exhibits.

“You have a track and a train and you have a schedule and you have times and places and it’s visual and you can see it and you can experience it. And it’s knowable. It’s not a lot of change. And that’s calming and very comforting,” explains autism specialist, Susan Brennan.

Recently, representatives from 60 cultural institutions came to learn about ways to use the exhibits at their own museums to attract and engage the autism community. We look forward to the spread of autism-friendly programs and exhibits to museums around the world.

Woodstock Chimes Autism Story

When Autism Fidget Toys Become the Latest Craze

“Mum, it’s like everyone wants to be autistic like me now!” My 8-year-old daughter announced this as she came out of school on Monday. 

She was referring to the latest “craze” for the fidget spinner in her school (and it seems every other school in the country). Suddenly it was “cool” to want to fidget, and if you didn’t have the must-have fidget toy, you were somehow the odd one out.

It did somewhat amuse me to think that after an entire month of autism awareness, all it actually took to make autism “cool” was a little handheld plastic and metal spinner! 

Does having this fidget toy, which is marketed and made for those with autism and ADHD, become a huge international craze benefit those with autism or not?

It certainly seems to have made my daughter less stressed and self-conscious about her need to “stim” at school. Previously, it was rather obvious in her mainstream classroom which children had autism or ADHD, as they had access to special cushions, stress balls and tangle toys to help them concentrate or remain calm. While others were shouted at for fidgeting, a select few were allowed to “play” with these items at the teacher’s discretion. Having a fidget toy was something only children with a diagnosed condition were supposed to want or need.

Suddenly, all that has changed. 

While this has the advantage of making children with autism feel more included and less isolated, perhaps even “cool,” it has some negative effects, too.

How do you decide which children just want a fidget toy and which children really need it? Should schools allow all children the opportunity to fidget and “play” in order to enhance concentration and productivity, or are fidget toys actually a huge distraction in the classroom setting?

In the U.K. and the U.S., a large number of schools have now placed bans on the latest craze of fidget spinners, claiming they cause problems in the classroom and are a health and safety risk. This is not the first craze schools have banned, of course, but this is perhaps the first time such an overarching ban has actually had such a negative impact on autistic students. After all, the manufacturers never set out for the toy to be used so casually by so many people, and it was, in fact, designed as a stress release for the autism/ADHD market. 

My daughter would be devastated if her school introduced a similar ban. For her, the fidget spinner is not a must-have craze to be like her friends, but more a stress release from the demands placed upon her during her school day—much the same as she uses a stress ball or her twist-and-lock blocks. When schools decide to ban sensory and fidget toys, they risk isolating the very children they’ve spent years trying to include. 

I am loving seeing my daughter play together with children in her class with a toy she is confident in and comfortable with. It is rare for a craze to include her, as she is usually socially unaware of what others are doing. To see her included of her own doing is beautiful. I love that the world is now seeing sensory and fidget play as “normal” and not something to be mocked or frowned upon. I love that the current “in thing” is now readily available in shops everywhere and very inexpensive. It requires no language and little skill, so everyone can join in. 

But I worry too. I worry that schools are quick to react and ban everyone from using fidget spinners just because they are so popular. I worry that when everyone else moves on, my daughter will be the one left standing alone, still spinning her little handheld plastic spinner by the school gate and once again ignored by her peers. I worry that people will see her as just “playing” like everyone else and forget that, for some, these fidget items are a necessary stress release and stim. 

Time will tell how long this latest trend lasts. For now, though, I can see my daughter’s point. It really is like everyone suddenly wants to be autistic. I am watching with interest in the hope this has a positive impact for awareness and acceptance of not just my daughter, but the rest of the autistic population too. 

How I Transition My Son Back to School After Holidays

As a mum of seven, I have many years of experience with the back-to-school thing. New shoes, earlier bedtime and alarm call, packed lunches and hunting down the PE kit. But that was before we had a child diagnosed with ASD.

Towards the end of term, my boy was getting more and more distressed with every day of school. I was having to become more and more imaginative with ways to coax him off the floor, to eat and get ready for school, to get out of the door, along the road, into the playground and finally into the classroom.

It was exhausting and upsetting even without the scornful/pitying/bewildered looks from other parents.

I am lucky in that I get a good level of support from my son’s school, but even so I breathed a sigh of relief when the Easter holidays finally arrived and I could take a day off from that particular nightmare.

I wondered if the lack of school routine would prove difficult, but once I had decided that on the whole, dressing in day clothes could be optional, he soon settled into his own routine. It made it much easier for him to tolerate any plans we had as a family.

The end of the holidays were looming – they are always over far too soon. I realised to make transition easier for him, I was going to have to start preparing him to go back to school.

We started in the same way we prepare our neurotypical children: Being more aware of the bedtime routine, bringing meals back to more “school hours” friendly times. Sorting out uniform, shoes and PE kits. (I swear someone steals them and hides them during the holidays!)

I decided it might be good to talk about what was going to happen with my boy – he likes to know what the plan is.

Firstly though, I talked about what we had done through the holidays. We chatted about what he had enjoyed most and why. He was relaxed and happy remembering all the fun he had had. Then I suggested he could tell his classmates and teacher about his favourite thing – we talked about how he could bring it up and what he might say. We discussed taking a shell he found at the beach in to show people.

He will spend all of his time alone if left to his own devices, so I thought this was a good way of giving him tools for the cloakroom/playground socialisation he often struggles with.

I allowed him to choose his favourite underwear for the following day at school, and put his favourite comfort foods in his lunchbox – OK, so it was a bit beige, but I knew he would eat it and be happy to see his faves in there rather than be challenged by unfamiliar or less-tolerated foods.

I talked to him about what he might do during the school day. I then chatted about what he might like to do after the school day had ended, which he enjoyed.

When it came to crunch time, he still fell to the floor and went into his panic mode so, yes, I confess, I bribed motivated him. I showed him three tiny chocolate mini-eggs and promised if he walked nicely to school with me, he could eat them in the playground. I promised my neurotypical daughter she could have some when she got home – luckily, she’s very understanding of her brother’s different needs.

This did the trick and he went into the classroom with no further stress.

The next day, he was more settled. Although he was initially reluctant to leave the house, he responded to our more usual chocolate-free motivational efforts – timing, playing verbal and spotting games, and planning future events that he loves to do.

I am lucky – my boy is verbal and bright, but still the school run can descend rapidly into an emotional car crash without planning and careful management. I’m always looking for new ways to make life easier, for him and for the rest of us at that busy time of day.

Amazing Things Happen – An Autism Video

Autism Training: ‘Just Watch the Big Bang Theory!’

Image courtesy of Flickr Creative Commons

‘School staff member told ‘watch Big Bang Theory’ as Asperger’s training’ was the title of a news report published by BBC Scotland on 1 March 2017. Here’s the link to the article.

For those of you unfamiliar with The Big Bang Theory, it’s a sitcom following the lives of four young American scientists who share a flat. One of the characters, Sheldon Cooper, displays some characteristics associated with Asperger’s syndrome; however, the creators of the sitcom deny that they have based his character on someone with the condition. I don’t watch The Big Bang Theory regularly, but have seen enough episodes to appreciate why it is so popular. My kids love it.

I had a chat with my son, Edward, about the news report and asked him for his thoughts.

He thought that Sheldon represents just one person who exhibits only some of the common features of autism including:

  1. Literal interpretation of language.
  2. Preference for fixed routines.
  3. Difficulty showing empathy.
  4. Difficulty understanding sarcasm.
  5. Formal use of language in informal situations.

Edward surmised that by watching The Big Bang Theory, a teacher might glean some tips on how to communicate with Sheldon Cooper or someone who is extremely similar to him.

However, here’s the issue. Autism does not present the same way in different individuals. Not all autistic people will have the same challenges with communication that Sheldon has. Some people with autism will experience additional challenges with sensory processing, physical coordination, executive functioning, motivation, organization, and speech and language. Many kids with autism experience high levels of anxiety and have meltdowns.

Knowing how to manage a child with autism requires a lot more training than watching a few Big Bang Theory episodes.

Being taught by staff who understand about autism and who differentiate the curriculum (and often, more importantly, the rest of the school day) to accommodate the needs of an autistic pupil can make the difference between a thriving, learning-contented child and a school refuser or an excluded pupil.

The recently published GL assessment, Hooked on Labels Not Need  found that a large majority of teachers (57%) thought there was a misdiagnosis of SEND (special education needs and disabilities), with only a quarter (26%) disagreeing.

On face value these figures are very concerning. However, I think a more detailed breakdown of the responses is required. The wording of the questionnaire may have skewed responses; teachers would only have to have come across one child who they believed had a misdiagnosis of SEND to agree that there was currently a misdiagnosis of special educational needs amongst children. There was no breakdown of teacher’s views regarding specific types of SEND diagnoses.

Do teachers think that autism is regularly misdiagnosed? Or were they referring to other conditions? We can’t tell from this report – it’s not clear.  There have been a lot of detailed responses from parent bloggers to this report. Some provide anecdotal evidence about the need for a label to get support. Others make the point that there should be a recognised process to follow when educational staff dispute a diagnosis given by medical or allied health professionals. Some write about the difficulties they have faced when school staff dismissed their child’s needs. Many of these posts are available to read here.

The BBC report indicated that education about SEND for trainee teachers decreased over recent years, as did post-qualification SEND training. Ambitious about Autism reports that 60% of teachers in England do not feel that they have had adequate training to teach children with autism. Schools, faced with financial constraints, often send just one member of staff to training sessions, with the idea that this person will cascade their new learning to their colleagues upon their return. No matter how well a staff member is able to summarise what they have learned on a full-day course, I think it’s questionable to expect that they can adequately condense and convey the training they have received to their colleagues, presumably in a 10-minute slot during a packed staff briefing.

Pupils with autism are more likely to experience social isolation and bullying. They also have a higher rate of informal and formal exclusions from school. Only 15% of adults with autism are employed. This suggests that all is not as it should be and that pupils with ASD need more support throughout school and beyond.

In my opinion, a good autism training for school staff needs to include the following (this is not an exhaustive list nor is it in any particular order):

  1. An overview about autism and how it can present differently in different pupils.
  2. Practical steps that staff members can make to change their communication style so that breakdowns in communication are less likely to happen.
  3. The importance of working with and communicating well with parents.
  4. Ideas for motivation and ways of rewarding pupils with autism to help them stay engaged.
  5. Awareness about sensory processing difficulties, as so many meltdowns and behavioural challenges are a direct result of too much stimulation. This should include practical steps to reduce sensory overload and understanding about stims.
  6. Strategies for dealing with a child in meltdown.
  7. Methods to de-escalate anxiety levels.
  8. Training on how to help ASD children learn to regulate their behaviours.
  9. Awareness of what parents of ASD kids are dealing with at home and finding out what strategies work there.
  10. Working with children with poor executive function who need structured help with organisation and initiation.
  11. Understanding why routines are important, and minimising the negative consequences when routines have to change.
  12. Understanding about commonly associated conditions such as ADHD and dyspraxia.
  13. Strategies for teaching good social and conversational skills.

Parents of newly diagnosed children, teachers, teaching assistants, grandparents, youth workers and adults who have recently been diagnosed would all potentially benefit from autism training so that they have a chance to learn and understand more about autism. It’s only with this understanding that you start to make positive changes to your communication, routines and environment, causing life to work better and flow more smoothly for everyone.

The original version of this post first appeared here.