Autism Backa**wards

Asperger Ninja recenly posted an update on her son's first day of school. After reading it, and Amy's tremendous sense of relief and pride that there were no phone calls, early pick ups, or sad faces at the end of the day, I proceeded to get on my soapbox (which, in case you haven't noticed, I never leave home without) and rant away in a comment on her blog. Because it suddenly struck me - why is this AMAZING mom, who is raising her AMAZING son as a single parent, who writes and advocates passionately and intelligently - why is it that she holds her breath and joins the "sweating panic-y club" over a single day at school? Who among us has not felt this way? Chronically?

It is this way because our mixed up world has got the whole autism thing backwards. That's why.

How is it we allowed ourselves, our strong warrior-parent selves - to be made jumpy by a phone ringing? I still get a sick feeling in my stomach - literally - when my phone rings during school hours. How have we allowed ourselves to lower our eyes slightly when we enter the school to pick up our child early because of a meltdown. Allowing an ever so faint shadow of shame to fall over us, even as we come to collect our most precious and perfect little people, as if they have somehow let people down?

Grrrrrrr. It makes me so mad.

I need to be clear here that Amy was not necessarily writing about any of this, nor does she necessarily share any of these experiences that I'm recounting. She was just writing about the feeling she had when her son had a great first day at school. What I was struck by was how I knew exactly how she felt and at the same time, I resented being put in a position to feel that way. Because in order to have this tremendous sense of relief, you have to be carrying around a whole lotta fear. I resent being afraid of what is going to happen when I send my son to school.

I think that it is a criminal shame that we 'autism parents' end up with this overwhelming sense that our kids are not doing enough/trying enough/meeting expectations enough, because we get inundated with phone calls and early pick ups and sad faces... which are all just an illusion of inadequacy.

I think often the reality is that our kids are working DAMN FRICKEN HARD to navigate this messed up neurotypical world, and they just need an environment that values and respects and recognizes their DAMN FRICKEN HARD work. I think the reality is that our kids go through days, weeks, years of school having beautiful and important ideas, sharing brilliant new ways of thinking and seeing, offering endless opportunities for diversifying our collective wisdom, and much of it goes completely unnoticed. Because there is a lack of recognition that often the problem is not with our kids meeting expectations, but rather that the expectations are profoundly neurocentric.

I continue to be amazed by how insightful and flexible my son is, considering the textbook (neurocentric) definition of his diagnosis would indicate he cannot be. His counsellors at summer camp (5 weeks of day camp) made a point of telling me that nearly all the problems they encountered that involved Simon, were not caused by him so much as they were caused by the unwillingness/unpreparedness of his peers to understand, accept or accommodate him.

The museum daycamp Simon went to this summer was a lot like school. Really, that's why we chose it. It had classrooms, group work, individual work, crafts and writing and reading, and a room full of 30 noisy kids, one 'teacher' and a couple of helpers. Normally I would shy away from this kind of trial by fire, but Simon is insisting on going back to public school to be with his friends this year, and I needed to get a sense of how much he could handle.

In 5 weeks of Grade 1 last year we received more phone calls from the school than I can count. In one, a teacher asked me if Simon was "always a naughty little boy who never does what he's told". Another was from a gym teacher who said he "sure doesn't know that Simon", when I said that my son was sweet and wonderful at home.

In 5 weeks of daycamp at our local museum this summer, I received 2 phone calls. One was to say that Simon had been attacked by a little boy with significant aggression issues, and we really needed to come get him, as he was quite shaken up (with marks on his neck from being choked, and deep scratches down his cheek). My reaction to that phone call was complete and unadulterated compassion. For my son obviously, but also for the other boy and his family, who had received a very different kind of phone call to come and pick up their child.

The second phone call on another day was from his group leader, who was just bursting with pride as she recounted the way Simon had tried to encourage a compromise in his group that day. The boys were forming a team and agreeing on a name. All the boys wanted "Hammerheads" but Simon wanted "Sharks". The debate went on until Simon offered: "Let's compromise and be the Hammerhead Sharks". A poetically literal take on compromise.

I know many of you are familiar with how significant this kind of thinking is for a 7 year old Aspie. And the impact he had on his leaders for those 5 weeks was remarkable. One of them even said she hadn't considered working with kids before (she was a University Science Student) but she was now considering volunteering with kids who have special needs. And I hope she does because she's damn good at it.

So what was different between the school experience and the daycamp experience? Were these really two different children: one a naughty and annoying little boy who was unmanageable and the cause of endless problems and phone calls, while the other child was generally cooperative, hard working and engaging - even inspiring?

Nope. Same kid. My kid.

One environment didn't work, the other one did. And this is where the world has got this whole autism thing all backwards.

The key concept here is meaningful inclusion. And this brings me to a truly MUST SEE film called Including Samuel. It's airing on PBS stations across the continent this fall, and I was fortunate to catch it the other night. It was a stunning inside account of a family's battle to have their special needs son meaningfully included in his mainstream class, and it includes discussion of autism in the classroom. You need to see this film. And I dare your heart not to grow a few sizes with one look at Samuel's smile.

There were so many gems of wisdom in this film that it's hard to narrow them down, but there are a few that I really wanted to share with you.

First, the filmaker (a photojournalist and the father of Samuel) interviews a teacher who is so overwhelmed by the demands of including a special needs child (Downs Syndrome - who has a full-time assistant) in her class, that she is literally giving off waves of stress through your tv screen and is reduced to tears. She says: "How am I supposed to teach this girl, and the valedictorian at the same time? I don't know how to do that."

This statement stopped me cold. Did you catch it? Did you catch the fundamental flaw in her logic? The underlying misconception that is surely informing the way she is teaching?

Here it is: why has she determined that this girl and the valedictorian cannot be one in the same? She has already decided this girl is at one end of the scale, and the valedictorian is at the other, and not only can this girl never be valedictorian, but between the two is neither common ground, shared educational needs, nor respective gifts waiting to be tapped. Instead, there is a chasm between the two that the teacher feels powerless to bridge.

Ultimately it is not this child who is causing this teacher such palpable stress. It is the lens through which she is seeing inclusion, the bias she holds against differently abled students. She cannot see the value this girl brings to the educational experience of all her students. Part of that is her own fault, part is the fault of her institution. Strikingly, interviews with the other students in the class revealed that they wanted the girl included more, not less.

The final point I want to make stems from one of the most profound wisdoms I've heard in a long time. An administrator interviewed in the film said something like this:

'If schools are looking to design meaningful inclusion, then we need to think about whether there is anywhere in society right now where that's already happening, because that is our model. Is there somewhere that full inclusion is already being implemented? The answer is yes - it's being implemented in the family.'

Which tells me that to start reversing all this backwardness, we need more phone calls to the school, and fewer from them.

Your Story Has Power

Lately I’ve been noticing a lot of MOs, which is an acronym I created for Missed Opportunities. Working for the government, I can assure you that the assignment of an official acronym to any old phrase, will instantly elevate its relative importance. And therefore today we will speak of relatively important MOs.

I have been trying to make a point of taking better care of myself lately, as I am really feeling my age this year more than ever before. It’s become evident to me that at 36, I can’t really coast along anymore and expect my physical and emotional health to look after themselves as they have in the past. So I went to the hairdresser for a haircut. Almost 1 year to the day since my last hair appointment. How lavish of me.

I had the most interesting chat – which I have to say I don’t often have with hairdressers. I don’t blame them. Really, they must get weary of having to make idle chatter with daily minions of style-challenged middle agers like myself. Whenever they ask me what I do, and I reply “I’m a Policy Analyst for the government” I can literally see the volume in their own back-combed freshly coloured coiffures deflate, ever-so-slightly. I must strike them as eminently boring. But this young fellow was quite different. He was genuinely chatty. I like genuinely chatty people. I hate making empty small talk, but I do like a lively impromptu banter.

Anyhow, back to my tale. The hairdresser asked the obligatory questions: do you have kids, how many, how old, etc. Then he asked how Simon was doing in school.

Um. Well, gosh, how many hours do you have?

I felt intimidated by the effort it would take to sum up “school” for Simon, given last year’s fiasco. Let alone adding on the loaded prefix “home”. I didn’t want to be bothered going into it, and I didn’t want to deal with the stereotype of homeschooling, or a pity party for autistic kids.

But in hindsight, that was a profoundly selfish choice on my part. That was a major MO.

I was handed an opportunity to educate, to advocate, to plant a seed of awareness that grows into understanding. And not just to the hairdresser, because there were plenty of others near me in their chairs who would have heard, plus all the other staff. Imagine the exponential value that Simon’s story would have carried in that one, small place in that one, small moment. Now imagine all of our stories, our collective small places and small moments added together... wow. That's powerful. That's a revolution.

We all encounter these opportunities, more often than we may even realize. They are doors to spreading awareness, dispelling myths, growing compassion. To fostering a culture that understands; and that understanding begins with a simple story. The story of my little boy. Or your little girl.

Our stories are what unite us. Stories build bridges, and spur connections that generate empathy. Stories put a face and a name to what many have come to see as little more than a logo of puzzle pieces. Our stories go far beyond any logo. They demolish stereotypes and piece together images of truth.

Your story has power. Use it.

Time

If I could save time in a bottle
The first thing that I'd like to do
Is to save every day
Till Eternity passes away
Just to spend them with you

If I could make days last forever
If words could make wishes come true
I'd save every day like a treasure and then,
Again, I would spend them with you

If I had a box just for wishes
And dreams that had never come true
The box would be empty
Except for the memory
Of how they were answered by you.

Jim Croce

Simon and my Mom, who passed away 2 summers ago.

I find the concept of Time to be almost… disorienting. If I think about it too much – it’s frailty, it’s omnipresence, it’s relativity – I’m left with that same feeling I get when I wander off in contemplation of the origin of the universe – something from nothing. Time is a concept and a fact simultaneously. A commodity we both cherish and waste, a dimension of life we can neither touch nor see, yet sense is escaping from us each minute of each day.

Time though, for parents like us, I think has a different quality. When you parent a child who seems so often to have more than 3 dimensions… at least that’s how Simon often seems to me. Like he sees the world through the eyes of a creator, and feels the world as though he himself is made out of it. One moment he’s detailing a Bakugan brawl and the next he’s dropping profound life truths from his lips casually, without guile, as though all 7 year olds thought these thoughts and felt these feelings.

Time is revealing more and more differences between Simon and his ‘peers’. I question who Simon’s peers really even are… isn’t there an inherent quality of sameness and shared experience in the concept of ‘peers’? Certainly there is little of that in the kids Simon will trek off to school with in a few terifyingly short weeks. These are the ways I wish time would stand still, to keep him in this bubble of boys who still enjoy his energy and his enthusiasm, his confidence. Kids who haven’t yet been corrupted by the world, to label differentness as otherness. Time is on our side right now, but I feel it slipping away.

I wrote a while back about the importance of staying in the moment when our kids require extra patience, a strategy that a very clever follower named “What Would Bob Do?”. But that was limited to the idea of losing our cool under pressure. What I’m thinking about tonight is not about those moments of intensity and frustration, but quite the opposite. I’m thinking about the moments of insignificance that make up a much greater piece of our lives than we like to admit. The fleeting moments when we are given the chance to say yes, but we say no. Or given the chance to stop, but we go.

I’m thinking of times like the one where your child is snuggled in bed, covers over their head, and as you leave the room you hear their muffled voice, “stay just a little bit longer”… but you go. Because kids need to learn to sleep on their own, kids need 10-12 hours for peak performance, kids need independence… Or you are madly cleaning the kitchen which is ALWAYS messy or desperately trying to catch up on laundry which is NEVER done, and your child says “wanna play?” but you say no. Because kids need clean dishes and kids need clean clothes and kids need to play on their own and kids need, kids need, kids need….

You.

Your kids need time with you.

There is a beautiful, beautiful blog from a beautiful, beautiful woman named Lora, called a Quiet Life in a Loud House. Reading her blog is like breathing in fresh air slowly with your eyes closed. It just makes you slow down, and smile. She somehow manages to convey a message in two sentences that would take me a few paragraphs of rambling metaphors. Many of her readers have noted that she seems to revel in the moments of each day, seems to pause at the right moments for her children, recognize the profound gift each moment offers. Lora’s days feel timeless.

Simon and I recently watched a fascinating series on PBS from Stephen Hawking, and in one episode he theorized about time travel. He gave the hypothetical example of putting a group of people into a tunnel underground – a tunnel that ran all the way around the earth, in a train which would travel at almost the speed of light. The train would circle the earth for 100 years. The theory is that the group of people in the train would eventually emerge from the tunnel in the future. They would have experienced time differently (because of the speed of light) in relation to the rest of the world. So they time-travel to the future on the speed-of-light train but…. what did they miss?

Sometimes I feel like I am in that tunnel, on Stephen Hawking’s train. Life is not passing me by – I am the one soaring past everyone at break-neck speed, watching the world around me saunter along in it’s lazy way, wondering when I am going to hurry up and get to the future. Hurry up! God help me, how many times have I uttered these awful words to my kids. Hurry up! And how much I regret them in the grand scheme of things.

How much intrinsic value there is in just slowing down.

We all need to come to grips with our own time-demons. I have plenty. But the crux is that I fear time. I have come to realize that the biggest part of my fear will be lifted when I am at peace with how I am spending my time – not how the rest of the world wants me to spend it.

If I could save time in a bottle
The first thing that I'd like to do
Is to save every day
Till Eternity passes away
Just to spend them with you.

Our School Decision, and Resources for Yours

A few months ago I shared the struggle we went through in our attempts to find a school that is worthy of our little guy, Simon. I use that phrase "worthy of" intentionally. I am tired of the mentality that leaves us feeling our kids need to be good enough for the school, and I think that mentality has played a big part in making the school "system" so rigid and painful for kids with differences like ours. Time to expect the school to be good enough for our kids.

As you might expect, this is a rather tall order, but I'm just not willing to settle where my son's education - and self-esteem - are concerned. None of us should.

After much consideration, and a lot of self-doubt, we decided to give Simon's old school another chance. Here's why:

1. Our other options were limited - the private school we so hoped would become Simon's new school, changed principals immediately (days) before Simon's application was to be reviewed, and the incoming principal is apparently not "keen" on having more autistic kids in their school. Which is such a shame, because the school was becoming a real model of meaningful inclusion, thanks mainly to the outgoing principal. All the best schools outside of our division were full, no further applications were being considered. And while we were given the opportunity to explore other public schools in our division (thanks to yet another letter writing campaign on our part, after we were told the deadline had passed) we were no more confident in any of them, than we were in Simon's old school.

2. The difference between taking a chance on other schools in our division, and taking a chance on returning to Simon's old school, is that Simon has a number of good buddies at his old school who we made sure to have regular playdates with during the past year of homeschooling. Many of the challenges stemming from autism in a neurotypical world, are social. And when I consider how hard it is for Simon to be in a classroom in the first place (meeting unreasonable expectations and dealing with sensory overload), how much harder would that become in an environment where he didn't even have a single friend and had to start from scratch making social connections?

3. Finally, the only reason we even considered Simon's old school is because they ousted not one, not two, but THREE staff associated with the trouble he had last year. To me that said a) they took our situation seriously and weren't going to tolerate it, and b) the environment is a safer place for Simon now.

So... here we are planning for Simon to return to school. If I had my way, I have to admit I would keep him home. This past year of homeschooling has been more of a blessing than I could have ever anticipated. We are so much closer as a family, I have such a better sense of who I am, who Simon is and what he really needs. I feel much more empowered to be his advocate, because I really "get" him.

But Simon REALLY wants to go back into a classroom full of his friends. And I don't think at this stage (Grade 2) that I can deprive him of the chance to try. Of course the big unknown is not how hard Simon will try - I can guarantee you he will try his hardest because I've seen how far he's come in the past year; the big unkown  is how hard the school will try.

I have resigned myself to the possibility that this coming year may be a complete write-off for Simon academically. I have very little confidence in the teacher, having met her before school started, and unfortunately the principal sounded MUCH different in meetings where the division rep was present (ie. when someone who's job it is to enforce meaningful inclusion is in the room) compared to when they were absent. The principal's tone changed markedly and shifted away from discussions of how to accommodate Simon, to discussions of how Simon needs to find ways to assimilate. Hmmmm. I can deal with that - if it is a starting point for a journey in which the school and it's staff are open to working with us to gradually learn more about autism, deepen their respect for Simon as an idividual, and come to accept his differences as bringing their own gifts, rather than bringing a need for assimilation.

Only time will tell how the school handles Simon. Right now, their focus is entirely on Simon growing into their vision of inclusion. The test of whether we stay in this school beyond this coming year, will be whether their vision of inclusion grows to accomodate Simon. If I see progress and growth in them, then we will continue to work with the system. If not, then Simon deserves better, and we will have to find it elsewhere.

We have arranged to start with half-days and proceed from there. How quickly - or even if - we move to full days depends entirely on how Simon is feeling about himself and what kind of relationship the school fosters with us. Academically, we have plans for homseschool lessons during the part of the day he is not in school and over the weekends (which are good for Simon anyhow, since he really needs a consistent routine) and for exploring a math tutor from the University to foster his gifts in that subject (which will also mean I will be asking to have Simon pulled out of math class for resource work instead).

I will continue posting homeschool info and resources, especially from a sensory homeschool perspective. And for those of you who will be embarking on a year of school outside your home, I thought I would share some of the resources we are using to ensure three key areas of preparation:

1) the IEP (Individualized Education Plan) process:

http://thinkingautismguide.blogspot.com/2010/07/writing-effective-iep-goals-and.html

http://www.wrongplanet.net/postt46527.html

2) modifications needed to a child's learning environment:

http://www.sensorysmarts.com/working_with_schools.html

http://www.hartleysboys.com/2010/07/creating-sensory-friendly-classroom.html?

http://www.hartleysboys.com/p/sensory-accommodation-suggestions_23.html

3) materials we can supply to the school to improve their understanding of our son:

http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid-in-toaster.html

A mini-library for the classroom comprised of Can I Tell You About Aspergers?;

All Cats Have Aspergers; This is Gabriel Making Sense of School; I'm Not Weird I Have SPD; Sensitive Sam; Squirmy Wormy (all available on http://www.amazon.com/)

Photocopied excerpts from Raising a Sensory Smart Child and The Out of Sync Child (also available on http://www.amazon.com/), since it's unreasonable to expect the teacher to read those books in their entirety, but I want her to read certain key parts.

4) Tools for Sensory Success (vetted through the teacher in advance):

• sit fitter (wiggle seat)
• fidget toys
• chewlery
• gum
• a band that wraps around Simon's chair legs so he can bounce his legs while working
• mp3 - just for school - with playlist suitable for school to block out extraneous noise
• tennis balls on chair leg bottoms to reduce all that screeching when chairs are moved

I would also encourage you to look up the inclusion policies or special education policies in your province or state. They are the standards your school is legally bound to uphold but - you are the police. I know most of you are not here in Manitoba but these are our inclusion policies: 

http://www.edu.gov.mb.ca/k12/specedu/aep/inclusion.html
http://www.edu.gov.mb.ca/k12/specedu/aep/p_f_c.html
http://www.edu.gov.mb.ca/k12/specedu/aep/regulations.html

And finally, some time ago I read this excellent advice for beginning the year with a child who has special needs:

At the beginning of the year, discuss with the teacher your desire to: a) have them as the single point of contact for regular feedback between home and school (this means you will not be getting one call from the music teacher, one from the phys. ed teacher, one from the principal, etc., but rather one single call from the teacher when necessary; b) have regular meetings set up on a pre-arranged schedule - depending on your child's needs/challenges this may be once a week, twice a month, once a month, etc. (this helps prevent those dreaded phone calls from the teacher every day or every few days - ask that all issues that do not need immediate resolution be dealt with at these regular meetings).

I hope these resources will help you if you're feeling somewhat (or overwhelmingly) unprepared for the battle ahead. I sit here this evening, with a mountain of work ahead of me to sculpt my son's school into an institution of acceptance and accommodation, with the challenge of educating the educators on what meaningful inclusion really is. And I am left with a feeling that is too close to resentment, because of that word: battle. While so many of us are left feeling day after day that we are losing the battle with the education system, I do in my heart believe, we will win the war.

May the force be with you, my magical little man.  

Readers' Interview & Giveaway with Chynna Laird - Part 2

Here is Part 2 of the Readers' Interview & Giveaway with Chynna Laird. This portion is loaded with great advice for back-to-school. For instructions on how to enter the giveaway, see the intro to Part 1 here.
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5. Do you have suggestions for keeping track of, and meeting the needs of, more than one child with sensory issues? In my case, Dreamer is defensive to touch, light, little bit to noise. He wants to go live in a cold country! Speedy is a sensory seeker - cuddles, massage, compression, trampolines, crunchy spicy food, and Curly has mainly food related issues - only eats bland, soft food.

This is an incredibly timely question as I just found out that my son, Xander, also has SPD and other issues (our oldest daughter, Jaimie, has lived with SPD her entire 7 ½ years).

It can be confusing and overwhelming caring for more than one child with high sensory needs, but it sounds like you’ve already gotten in tuned with what sensory issues each of your kids lives with—good for you! In our house Jaimie and Xander are sensory polar opposites: Jaimie is mostly an avoider while Xander is mostly a seeker. You can imagine the chaos this causes because Xander may unintentionally throw Jaimie into sensory overdrive when he’s innocently trying to meet his own sensory needs by standing close, talking loud, touching, etc.

Really all I’ve done is kept a little file on each of my kids (Jaimie’s is a binder now!). The file includes:

a) A chart that lists each of your kids’ areas of concern, sensory-wise, including what works to help regulate or calm them. Each of them has distinct needs so each will have their own special tools, strategies and coping methods too. Then as they grow, you’ll find often their needs change too then you’ll have a record of what you’ve tried and you can switch things up.

b) A journal for each of my kids. It started out as something I created to chronicle all the amazing things they did from birth to adulthood. But it’s also become a way to keep track of how they’re doing at home during therapy rounds, their progress, how they got over hurdles, etc. I actually bring them out when they’re having a particularly rough day to show them, “See? This happened here and look at how you got through it!” It makes them feel better.

c) The last thing you may want to try including is a log of each of their triggers. I found that really helped us understand Jaimie a bit better in the earlier years before we knew what SPD was (or that that was the name for what Jaimie had). This helped me in two important ways: first, it mapped out where her true sensitivities were. For example, we knew that Jaimie was severely tactile defensive but were never quite sure what would set her off. Once we logged what ‘touchy’ things caused the worst tantrums, we were able to nip things in the bud and make sure we had the right tools ready. Second, once your child is in therapy and practicing her sensory diet, etc., logging triggers gives you a way to monitor what areas are being helped (or if they even are), shows whether another area is becoming more/less sensitive, and gives you a worksheet to let your therapist know what needs to be changed, worked on or improved.

I’ve also used these tools to explain my kids’ needs in school or when people come to visit. Above all else, we need to share with people what our kids do well, despite the hurdles they face most days. That’s so important because we want everyone to see these kids as being kids with something to give. So, always be sure to add in the good stuff too.


6. What types of interventions have you tried for your daughter over the years? What did you find to work best for her? Did the interventions remain consistent or did they change over time/as she grew?

When we finally got help, Jaimie was about 2 ½. At that time she’d gone without any sort of intervention and her body was extremely de-regulated. We had to start with at-home OT every week. The goal then was to get Jaimie used to social interaction with someone besides me—something she’d avoided her entire life (and still does most of the time). Unfortunately, that didn’t work out because she had a real problem being ‘treated’ in her safe place. The OT that worked with her got us into a local community program where Jaimie received weekly Play Therapy. THAT was a blessing for us.

It was perfect for a child like Jaimie whose sensory sensitivities were so severe that she wasn’t able to handle closeness or interaction of any kind. At that point she was what they called ‘selectively mute’, meaning that she could speak and understand language but she’d chosen not to speak because talking to others meant they had to talk to her. I guess in Jaimie’s mind, she didn’t know how a person would make her feel so she just avoided everyone but me who she felt safe with.

What Play Therapy did was helped Jaimie learn how to interact with us through play or toys. It was like a breakthrough for us. She still didn’t make eye contact much and still kept most people at an arm’s length but by the end of her sessions, she was willing to communicate, share ideas, follow instructions, etc. Once she got to that point, we felt she was finally ready for the more intensive SI-OT she’s doing now.

In between all of that, she also saw various psychologists, a psychiatrist, Listening Therapist, did iLS through her SPD OT, and we are now following Feingold and seeking the guidance of a nutritionist and naturopath. As a side note, there are other things that we did on our own that worked with Jaimie only we didn’t realize they had special names for it. For example, we got her a rocking horse that actually moved like a horse (Hippotherapy) and she wore that right out. Every time she was close to having a meltdown, we brought her into her room, put on the music she really liked (usually Wiggles or Beatles) and she rocked, rocked, rocked. I also do a form of Guided Imagery with her during times when she’s so anxious her regular sensory diet doesn’t work on it’s own. All I do then is get her to picture a beautiful place (she usually chooses water) and ‘see’ herself there. Then get her to tell me what she’s doing, how her body feels, etc.

For us, the biggest challenge has been getting Jaimie to connect with her body and learn to understand how things make her feel. Helping our kids understand how a person, object or event effects their body by describing what their bodies are doing during such times (eg: fast heart, fast breathing, prickly feelings, etc.) can help them understand what their bodies need in order to bring their bodies back down to a calmer state. SI focused OT is tremendously helpful in teaching these kids about their bodies and helping them feel safe in their own skin. The other methods simply fill in the gaps, offering additional support.

To answer the last part of your question, you’ll find that as your child grows, her needs will change. She may get over her sensitivities in one area only to seem to get worse in another. It may sound strange but this is actually a good thing. I was taught that when this happens, your child’s brain is making those neural connections to understand that particular sense, or part of that sense, and so her brain is saying, “Great! We’ve ‘got’ that now. But this one still needs more attention…let’s work on this more now.” I’ve found sticking to routine and a solid sensory diet to be the most helpful. You can tweak both of those things as your child grows and changes.


7. What advice would you give to parents who are trying to get the schools to understand their sensational children? Any tricks of the trade that have worked for you?

A very important question. I’ve actually been very fortunate in Jaimie’s situation as, with the exception of pre-preschool, we had teachers that not only wanted to learn about SPD but who were also more than willing to do everything possible to make the classrooms a ‘sensory safe’ place for Jaimie.

I understand that not all families have been as fortunate as we have, and have had to fight just to have the schools listen to their concerns. It infuriates me because it comes from lack of knowledge as well as an unwillingness to accept new information. A lot of this comes from the fact that SPD isn’t listed in the DSM as yet, which Dr. Lucy Miller and her research team are working so hard to achieve. This book, as many of you know, lists every disorder, disease and health concern including symptoms, diagnostic process, treatment and prognosis. Having SPD included in this book would mean that SPD will be recognized by the medical community as a ‘real’ disorder. The end result would be getting help for our kids in the community, as well as for school, will be much easier.

Until that day happens, however, we have to take on the challenge of getting our kids what they need ourselves. For some of us it’s not too difficult, for others it is excruciating. I believe in my heart of hearts that you just need to find that one person to be in your corner, to help make those heads turn to you and listen, to get the ball rolling. You just have to keep at it until you find that person.

For me it was Lori Fankhanel, Founder/President of SPD Canada. She and our OT, Kathy, gave me the right tools, words and information to go to Jaimie’s school and fight in a nice, calm, fair way. I’m a pretty mild-mannered, shy girl by nature but will get right in there if one of my kids’ needs are being ignored. I could say so much on this subject but, for now, I’ll just give you the main pointers I’ve found to help:

a) Give the right information first. Do not go in the principal’s office with all guns-a-blazing, making demands right off the bat. I had a lot of problems with our principal initially because he simply refused to take the time to listen to me. In my case I went to Jaimie’s potential Kindy teacher and explained everything to her first then she made the principal listen to both of us. Once he listened…really listened…to our story, things began to get better. That’s when I realized the true meaning of my grandmother’s expression, “You catch more flies with honey than you do with vinegar.” Give them the information they need to understand. Give them layman’s definition of SPD then tell them how SPD affects your child. Teach them about your child’s version of SPD and what he needs to concentrate, pay attention and learn. Because that’s what they want: facts and what they can do to help.

b) Bring in all the necessary documents. Bring in any documentation from therapists, OTs, etc. Unless your child’s form of SPD interferes with his learning, he may not have an IEP or similar plan because that is what is used to track the need for assistance. If your situation is such that your child doesn’t qualify or need an IEP, then work directly with the teacher. In Kindy, Jaimie had an IEP but she was ‘released’ at the end of the school year (they focused on her anxiety because that was ‘coded’ where as SPD wasn’t…yet) because she met all of her goals. The next year, I worked directly with her teacher who willingly accepted the “School Accommodation” lists from Jaimie’s OT as well as my own suggestions of what works in various scenarios. If need be, see if your OT or other therapist would be willing to come with you to meet with the teacher or other school officials. Sometimes having the parent’s insight mixed with the professional’s gets things going in the right direction.

c) Meet regularly with educators. We found that staying on top of things is critical. Oftentimes if the educators don’t hear from you they assume everything is tickety-boo and won’t think to ask. We had bi-weekly meetings with Jaimie’s teacher as well as monthly meetings with the principal and the other school officials. That way I could keep them abreast on Jaimie’s therapy, what’s working for her and what she needed as the school year progressed and they could tell me what Jaimie needed help with or was struggling with in the classroom or the rest of the school. The we brainstormed on ideas to help Jaimie.

d) Invite questions and conversations. People are more willing to accept something when they have all the tools they need to learn about it, including being able to ask questions. Think of how children are when presented with something new: they ask questions until you are sick of hearing them! I’d much rather have people ask me tons of questions than to stay quiet. We learn from each other by talking, communicating, and asking questions not by staying silent.

e) Offer to speak, or ask to put information up on the school info board. I’ve done this many times. I’ve offered to speak to the teachers or Aides and have put information about SPD on our school’s information board. Jaimie’s teacher even handed my books around to the other teachers! How awesome is that?

The point is there is really no specific trick of the trade that I’ve practiced. The one thing I’ve always done is gotten right in there and talked about it. “This is Jaimie and she is an awesome kid and a great student but she needs a bit of help. Why? Well, let me tell you about it…” Talking to other parents is a great way to spread information too because you never know when you are helping out another parent who is out there wondering. And I told myself that Jaimie is not the only child with SPD in her school and won’t be the last. If these teachers understand SPD, what to look for, have the tools to help these kids, have their classrooms ‘sensory safe’ for them for easier learning, they’ll be miles ahead for the future. I’ve even started on my school to create a small Sensory Room for these kids to be able to access during times of stress or when they need that sensory input. We’re even willing to put our own duplicate equipment in there! (Of course the main issue is having someone to monitor the room but I’d even be willing to do it if that’s what it took!)

I’m going to have four ‘sensational’ kids going through that school, if we live here long enough. I want the school to be ready for them and want my kids to know they’ll be in a safe place.

In the end, if you still get resistance from your school, be sure to contact your District Education Superintendent or contact your local SPD Foundation for more direction.
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Thank you Chynna for these thoughtful and thorough answers to my readers' questions. Readers, remember to enter the giveaway (instructions here); winners will be notifed and announced on or shortly after August 18.

My Readers' Interview with Author Chynna Laird and Giveaway: Part 1

Chynna Laird has written two important books documenting her family's experience with sensory processing issues. Not Just Spirited: A Mom's Sensational Journey with Sensory Processing Disorder explains the journey from a parent's perspective, while I'm Not Weird, I Have SPD shares the experience of a child. Chynna was recently announced as a Finalist in the Psychology category of the 2010 National Indie Excellence Awards, and to celebrate I asked her to host a readers' interview here at Welcome to Normal. A few months back I invited some of my readers to send me their most important questions about sensory processing issues so that Chynna could answer them. Chynna is also giving away a copy of each of her books!

There is so much good stuff in this interview that I've divided it into two parts. Here's how to enter the giveaway for these important back-to-school resource books: first sign up to follow this blog publicly (if you don't already), then leave a comment at the end of Part 1 and you'll be entered to win a copy of Not Just Spirited; leave a comment at the end of Part 2 (coming in a few days) and you'll be entered to win a copy of Chynna's kids book I'm Not Weird, I Have SPD. You can enter one or both, just make sure to include your email address in your comment if it's not available on your google identity. If you'd like to keep your email address private, leave a comment and then just send me a quick email using the Contact Me button at the top of the blog. In the unlikely event that the same person's name is drawn for both books, I will redraw the second name so that two followers are guaranteed to win one book each. You have until midnight CST on August 18th to enter both draws. Good Luck!

And now, with a big thank you to my readers Heather, Lisa, and Patty for their excellent questions, here is Part 1 of my Readers' Interview with Chynna Laird:

1. How do you tell when a troubling behavior is sensory-related or just a behavior problem? And how do you treat a sensory-related behavior differently than a regular tantrum?

These are excellent questions! I struggled with these issues a lot in the early stages with Jaimie, and still do. And I’m not going to lie to anyone, it can still be difficult at times to distinguish between when your child is trying to tell you her body needs something to regulate it or if she’s just cranky and having a typical “___-year old” moment.

After asking a dear friend of mine this very question, she said to me, “Chynna, you have to put your ‘sensory glasses’ on and look at the situation from those lenses.” What she was trying to tell me was that we have to step back and take a look at our child in the broad view of the situation she’s in at that moment. What events led up to the meltdown? Did she get enough of her sensory diet that her body needs? Is she responding to something or someone around her or is she reacting to something or someone around her? The last question there is very important because a child responding to something is basically giving you his opinion on something that’s happened and you can usually deduce quite easily that it’s behavior-related. It’s more of an “I want/Can I have…/Can we go to…/etc. type of thing. Whereas a child who is reacting to something is more in distress and almost in defence mode where they’ll need something sensory-related to bring them back down.

It can be very difficult to differentiate between the two because there is often a very fine line. Many children with SPD are rigid with routine so telling them you aren’t going somewhere they’re used to going can cause a meltdown not because you’re saying “No,” but more because it’s a change.

You really need to just watch your child, understand his form of SPD and see him with those ‘sensory glasses’ on so that you can make sure you know whether to discipline or regulate.

To answer the second part of this question, I’m so big on discipline—and that is so very different from punishing. No child learns from being punished—yelling, threatening, hitting, etc. They learn from understanding. Disciplining your child means talking about the inappropriate behavior and letting him know why that behavior is inappropriate, explaining what the appropriate behavior is then explaining what will happen if the appropriate behavior isn’t chosen. A sensory tantrum should be intervened with the appropriate sensory input that the child needs to help her calm her body down. I’ve often found that when Jaimie is experiencing sensory-related tantrums, I try getting her to describe how her body feels—in whatever words she can come up with—so I know what sort of input she needs. For example, if her stomach hurts and she saying she feels ‘prickly’ or ‘bad’ it means she’s ‘up’ or over-stimulated and we need swinging, massage or deep hugs. If she tells me that her nose needs to smell me or her arms feel ‘hangy’ etc. then I know she needs to get moving more: jumping, dancing, crashing.

Your child is different from mine and so he’ll have different needs. You need to watch him very closely and over time you’ll be able to tell the difference. Oftentimes it can be so slight it’s hard to tell but it comes.


2. I know it is best to follow a sensory diet to regulate our kids' senses, but sometimes they still have full-blown, crazy meltdowns that nothing seems to fix. What do you suggest in those situations?

I so understand this. It happens to us every single day. Caregivers must understand that even with the best-laid sensory diet, these meltdowns can still happen. You must understand that our kids are on ‘high alert’ all of the time—that’s how they are wired to be. Doing their sensory diet calms their bodies for a certain amount of time but if they aren’t getting that ‘sensory nutrition’ throughout their day, meltdowns are inevitable. Jaimie is getting a bit better about telling me what she needs and when but Xander is a whole other situation. He is only 3 ½ so he has no clue yet. What I usually do with Xander is try different things I know he likes: eg: covering him with his blankie and singing to him; letting him go behind the couch cushions and ‘hide’ from us; squeezing him; etc. But there are times when I just cannot calm him no matter what I do. In these situations, I tell him that I love him and that I undersatnd he’s feeling sad/angry/other feeling (ALWAYS name the feeling so he can learn to make the connection) but he can’t be with everyone else while he’s screaming. I tell Xander in these situations that if he can’t calm his insides down, and won’t let me help him do so, he needs to go to his calm down space until he’s feeling better. That’s not a punishment and shouldn’t be worded as such. It is a way to help him get in tuned with his body so he’s able to guide me to what he needs.

Plus, it’s a way to let him know that it’s okay if the world makes him feel bad sometimes and that you understand that it happens but that he isn’t allowed to make everyone else feel bad too. It sounds harsh but it’s a way to help him with self-regulation and teaching him to take that ‘alone’ time to recoup and regroup.


3. Have you noticed a difference between how SPD manifests itself in girls and boys? I am beginning to suspect my daughter also has it, but she acts so much differently than my son.

Another great question. All I know is what’s going on in my house: I have a daughter who is an avoider and a son who is a seeker, both to the absolute extreme in either direction. I’d like to say that girls aren’t as reactive or as aggressive but Jaimie is just as aggressive or reactive, if not more so, than Xander is. I don’t think that it’s a boy/girl thing I think it completely depends on the form of SPD your child has. Some are more affected than others and, therefore, each child will react to things differently.


4. How do you spread the word about SPD? I have a friend whose child I suspect has SPD, but I don't know how to bring it up without offending her. Do you have any suggestions?

Really all I’ve ever done is been very open about my experiences with SPD and Jaimie and Xander’s versions of it. I’ve found that if you talk about your experiences or what you know it sort of opens the door up to questions. From there you can ask further questions to see what their situation is like then give them the proper information, like the SPD Foundation or SPD Canada Websites or books like “The Out Of Sync Child,” “Raising A Sensory Smart Child” or other fantastic resources. I find that people won’t be offended if you err on the side of caution and act as though you are merely giving out information that they can take or leave. Telling them straight out that you think their child has a problem might be offensive but giving information because you are interested in the topic will never seem offensive. Hey! You can always just say, “I found this amazing Website on the subject of SPD! You should check it out!” That’s how you raise awareness—by getting people interested in a subject that’s being talked about then guiding them to the best resources to learn about it.
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Now remember to leave a comment to be entered into the giveaway for Chynna's award nominated book "Not Just Spirited". Stay tuned for Part 2 of the interview and giveaway in the coming days.

Published!

I was honoured to have my recent post Be The Change: How to Shift Autism into the Mainstream published in The Thinking Person's Guide to Autism, which (I think) will be putting out a printed paper version in addition to their online version. This is one of the best places on the web (IMHO) for insights and information about autism, in the form of collected essays from parents, professionals and autistic people. Topics range from the purely emotional to the purely academic, and offer a huge diversity of opinions and professional advice.

I encourage you to take a few moments to review their archives as they hold a true wealth of important information and ideas, and if you like what you see sign up to be a follower so you can easily see each new essay as it's posted.

The Second Fiddle

The term "second fiddle" derives from, rather obviously, the orchestra. Back when symphonies were the popularity-equivalent of Lady Gaga concerts, a first fiddle player got all the air time, all the accolades, all the roses tossed upon the stage (ok I’m sorta making up that last part, but I imagine roses being thrown on the stage for all concerts held during those ancient times before I was born).

While the photo shows Simon during a violin recital, in our house, Seth is surely the second fiddle. The teenaged child has plenty of drama, the autistic child is often by necessity the centre of the household universe, and wee Seth can be lost in the shuffle more than I like to admit.

I call Simon my ‘Me First’ child. His needs are significant, his neurology a puzzle that we as a family are solving more each day. But like that 25,000 piece puzzle of a blue sky at Auntie Muriel’s house – the one that’s still laid out on the card table every time you visit – this puzzle is never really finished, and never ever gets put away on the shelf. Simon is by nature, our Me First child. There are many times that his needs must come first, and it’s OK for his siblings to grow up understanding and respecting that sometimes other people need things more than we do, and that we don’t need to be resentful of that.

The key to avoiding resentment, is not making sure that everyone gets the same treatment, but rather that everyone gets their own unique needs met.

Alex, my teenaged step-son, is 17 and I’m going to spare him from this particular set of analogies as it’s hardly fair to judge him in all his hormonal coming-of-age glory. That’s frankly a whole other blog unto itself.

That leaves the baby. My 16 month old bundle of cuddly giggledom, Seth. I call him my ‘Me Too’ child. He has a very strong sense of himself and makes his presence known in no uncertain terms, likely because he has to in this household of opera-singing sensory seeking Autistic and know-it-all eye-rolling teenaged brothers. Seth has to, in his 16 month old way, yell out “Me Too!!!” to get his fair share of airtime. Mix in Simon's non-stop talking, characteristic of Aspergers, and the fact that Seth barely comes up to my knee, and you can imagine how hard it is for him to really be seen and heard the way he needs to be, as a person in his own right.

I’ve been trying to dedicate more time to my Me Too child. More time with him, and more time thinking about him too. Thinking about what’s working and what’s not for him. And I’ve started implementing more of a formal plan of action to ensure he stays front and centre – where all my kids belong. Here are some tips on how to ensure your own Me Too kids feel loved, appreciated, and heard.

1. Consider getting a babysitter for Me First only, allowing you to spend quality, focused, one-on-one time with your Me Too child (or children, if you have more than one Me Too). Every second Saturday, Simon has a babysitter who is more like a buddy/mentor than a babysitter. He’s a teenaged son of a good friend of mine and my, he’s quite a gem. If I could bottle him and send you all a dose, I would. At first I made this regular arrangement hoping my husband and I could have a much needed date night twice a month, but the sitter for Seth proved inconsistently available. At first I was really defeated by this, because I felt like I had tried so hard to do what special needs parents are supposed to do: make time for each other. And yet, at every turn something fell through. Then as I often try to do, I went hunting for the silver lining – and found it wrapped around wee Seth. When we can get both sitters coordinated we get our couple time, but when we can’t, we use this as a wonderful opportunity to spend some much needed Seth time. Simon never feels like he’s being left out, because he’s hanging with his cool teenaged buddy, and we get to soak up the essence of our Me Too child before he grows up in a blink of the proverbial eye.

2. If you decide to find a sitter for Me First, make sure they are someone your child really enjoys. If Me First has behaviours that need some understanding, make a simple pamphlet or letter to help the sitter anticipate, understand, and respond to any issues while showing respect to your child. You can check out the pamphlet I made up here if you’d like an idea of what to cover (mine is based on an Asperger diagnosis - feel free to print it off if it suits your situation). Leave a schedule designed to keep your child regulated, if transitions or changes in routine are particularly hard, and also leave out some favourite games or crafts and snacks to keep things fun and familiar.

3. When going out for some one-on-one time with Me Too, plan activities that aren’t really made better by having another child along. For example, going to an amusement park may be more fun with a friend along, but the zoo or swimming or minigolf are great for kids and adults alike.

4. Think about things Me Too may really enjoy, that are more challenging when Me First comes along. For example, a trip to the dinosaur museum or art gallery may often be dominated by Me First’s vocal dialogue, and perhaps Me Too would appreciate being able to formulate and share their own ideas. Or perhaps your Me Too child’s favourite activity is too overwhelming for Me First, and you hardly ever do it (or when you do, it’s a catastrophy). Plan these activities as special private times with Me Too.

5. Continuing on the theme of making Me Too feel special and deserving in their own right, why not let Me Too plan the ENTIRE date? Where do THEY want to go? What do THEY want to see? Which restaurant do THEY want to go to? If you’re like my family, many of these basic decisions are made for us, every single day, by our Me First child’s primary needs, sensitivities, and triggers. And that’s OK, that’s just life. But we need to make time for Me Too to call the shots.

6. Planning Me Too dates is a great strategy, but all children need to feel important on a regular, consistent basis. Sneak special Me Too moments into every day – even if it’s literally just one moment each day. Dropping Me First at a therapy session? Bring Me Too along and duck out together for an ice cream sundae while you wait. Use the time to talk about what’s happening in Me Too’s life. Me First having a bath? Play a game of cards or checkers with Me Too (quick, simple games that don’t require time to read the rules or play a round). Consider tucking Me First into bed 10 minutes earlier, to allow 10 minutes of personalized bedtime reading with Me Too (or cuddle and talk about memories from their babyhood – I remember always feeling special when my mom recalled fondly her memories of me as a baby).

7. And the big kahuna of Me Too ideas? Their very own vacation. You read that right. It doesn’t have to be Disney Land (though I saw comments from one mom who did this successfully) – it can be as simple as having one parent stay home with Me First or dropping them at a close friend or family member's for the night, and you take Me Too to a local fun-for-kids hotel (or a spa hotel if you’ve got a girly girl or teen) for even just one night. Go to their fave restaurant, do a little meltdown-free shopping and get them a special gift, and retreat to your peaceful maid-attended hotel room for a movie. Even if you can only do this once a year, I think this tradition would leave a lasting impression with Me Too that will help them feel loved and appreciated throughout their childhood.

And now I’m off to implement some of my own ideas!

Mega Sensory Giveaway!

This may look like a short post, but trust me - it's jam packed with awesome stuff!

I've got a few good giveaways coming soon myself, but I have to say this is the best one I've ever seen in terms of variety and purpose: Soft Clothing and Hartley's Life with 3 Boys are co-sponsoring this fantastic back-to-school mega giveaway worth over $250.
Even if you don't win, I encourage you to check out many of the great sensory items in this giveaway like the headphones, mudd, pocket chew sticks, and sensory desk bar. I know I will be! You can click the twitter and facebook links at the end of my post to count as entries too, and you can even link to this post on your own blog (which I think counts as 2 entries) - that's 4 entries in about 2 minutes right there! Once you've tweeted, fb'd and blogged, you can fill out the entry form by clicking on the Soft Clothing link here.



Good luck everyone!

July Blog Carnival: A Year in SPD Photos

The theme for this month's Blog Carnival for the SPD Blogger Network (see my sidebar for info on joining or using this excellent resource) is SPD Photos. I think the idea was one or two photos but... you may have noticed I'm a bit of a shutterbug so... my contribution to the Carnival is "SPD: A Year In Photos".

Red Dye Sensitive

Under the Warm Laundry Mountain

Building cities with cheese rather than eating it

Turning the dial waaaaaaaaay down on the hot tub

Searching out the most awesome Star Wars cake even though you know he won't eat it

Seeking and finding total sensory peace

Peeling an egg = victory!

Water

Spinning

Underwear and Barefeet

No Pants

Tactile Projects like Dino Terrariums

... and Space play sets stapled entirely by small determined hands

Plenty of free play

Getting used to sticky hands... the ice cream way

Touching nature... and my heart.