When I met with the therapist to discuss my diagnosis, I asked her to list the things that pushed her over the edge to Asperger’s. Before she could answer, I told her that I was afraid I had skewed my test (the GADS) with some of my answers. Like on some questions I had said frequently when really it would have been more accurate to say sometimes. She laughed and told me that this wouldn’t have made a big difference because neurotypical people would have answered never to most of the questions. Oh. Okay.

Then she started to tell me how she made the diagnosis. She told me that she did look at the GADS score (I scored 100; a score greater than 80 indicates a strong possibility of autism), but that she also went over the spreadsheet I brought in and her notes from our conversation over two meetings, highlighting indicators of autism. She showed me the spreadsheet; it was covered in yellow highlighter. Which really shouldn’t have come as a surprise, as I had made it so I wouldn’t forget to tell her any of the things that made me think I was autistic, but it did.

I took notes as we talked, listing things she picked out to serve as examples. I’ll share things from the list as we go along, but I thought I’d start with the first item: I have two boys on the spectrum.

I suppose I could have just left it at that. After all, long-time readers took much of that journey with us. But what about new readers, assuming I get any. Or people who may have forgotten some of it because, you know, they don’t live with us. Or they have other things to think about sometimes. I could just make them go searching the archives to learn about our journey so far, but what if there was a concise summary somewhere? And then I remembered that there is. Not the concise part so much as the summary part.

Last fall, a friend contacted me looking for resources about autism. The son of friends of his had just been diagnosed with autism and my friend wanted to offer them as much support as possible. Because, you know, he’s awesome like that.

This was before my own diagnosis, so it’s just about our experience with the boys. Zoo Keeper’s getting to an age where he worries about schoolmates finding things to tease him about, so I don’t plan to blog much about the boys’ autism anymore. I’m going to blog the hell out of my own, but I’ll get back to that.

This isn’t meant to be a definitive resource on autism, just one family’s experience. Definitions and explanations are based on the way I understand them, so they may not jibe with others and some of them may be just plain wrong. Sorry about that!

Also, I changed the friends’ son’s name to *John*.

This is really, really long. I take no responsibility for the time-suckage you may experience should you choose to read on. All the same, if it helps you fall asleep, you’re welcome. Next week I’ll move on to the second item on the therapist’s list of things that convinced her I’m autistic.

                                                                                                    

When Zoo Keeper, my oldest, was three, we took him to a speech-language pathologist (SLP) because his speech had not increased since putting in ear tubes six months before. The SLP noticed several signs of delay (hand flapping, toe walking, etc.) and, in addition to scaring the hell out of me with her report, referred us to an occupational therapist (OT). I also got a call from our pediatrician telling me Zoo Keeper had pervasive developmental delay (PDD) and referring us to Children’s Autism Center for evaluation. I didn’t realize at the time that PDD was the same thing as autism. I took Zoo Keeper to an OT and she was able to help him so much with his sensory issues that his speech improved markedly in just a couple of weeks. The OT told me that she thought he just had sensory issues, meaning Sensory Integration Disorder/Sensory Processing Disorder, and, if anything else, just mild PDD-NOS. She wasn’t qualified to make that statement, but I didn’t know that at the time. I really wish I had.

I talked to our pediatrician about it and he agreed that the treatments wouldn’t be much different if Zoo Keeper were diagnosed, so we decided to wait and see. I didn’t take him to the Autism Center at that time. I spent the next two years learning more about autism and all the therapies, but also spent that time on the fence about whether or not Zoo Keeper was on the autism spectrum. When he was actually diagnosed, the psychologist (because it’s a psychologist or psychiatrist who actually makes the diagnosis) said Zoo Keeper was on the line for many of the criteria, so she technically could have diagnosed him with Asperger’s, but there were so many of those that she went with autistic disorder. High- and low-functioning are not diagnostic terms, but colloquially he would be considered to have high-functioning autism (HFA).  She recommended books about Asperger’s/HFA because they are essentially the same thing.

From the time he was three, Zoo Keeper had weekly (sometimes twice weekly) sessions with an occupational therapist, a speech therapist, a physical therapist, and a social skills group.

BamBam, who was six-months-old when all this started with Zoo Keeper, basically grew up in the lobby of Mosaic Children’s Therapy. The receptionist, OT, and I all breathed a sigh of relief when he crawled on time and didn’t use defensive hand movements (which would show sensory issues with regard to touching the carpet). That was short-lived, though, because by twelve months I had started him in OT and was also concerned with his lack of speech. I talked Mosaic into doing a speech assessment even though most of them thought I was nuts to do it at 12 months. The SLP said that she did notice delays, but it could be nothing and to go to Kindering if he hadn’t improved by 18 months. I had no idea what Kindering was – turns out it’s a mostly grant funded center that serves developmentally delayed kids from birth to three. I highly recommend finding out if your friend has something similar in his area.

I had BamBam evaluated at Kindering at 18-months. He flitted around the room from one thing to another during the evaluation, never stopping at anything for more than a few seconds and wouldn’t sit down at all. They started him in motor therapy (basically OT) and something they called education, which looks a lot like OT as well. They wanted to hold off on speech until his sensory issues were addressed enough for him to stay in one place for a minute or two. That only took a couple of months, but I mention it because John’s lack of focus could be related to sensory issues. Eventually they also added a kind of co-op preschool for BamBam.

At two-and-a-half, we took BamBam to be evaluated for autism. Because he wasn’t really verbal yet (he would say one word and then not say it or anything else for several months, then say a totally different word and repeat), they said they could diagnose him with an Autism Spectrum Disorder, but they couldn’t be specific about which one. Frustrating as hell at the time because their report was so generic. We took Zoo Keeper somewhere else to be diagnosed a few months later (yes, our younger son was diagnosed before our older son) and were very impressed with the detail of the diagnosis. Looking back, I’m thinking it was his age in addition to verbal ability. But I’m wondering if that’s why John’s diagnosis is considered preliminary.

Anyway, when BamBam turned three, the Kindering Center facilitated his transition into developmental preschool through our school district. Once again, I had no idea this existed before. And Zoo Keeper didn’t get to go because he was too old by the time I found out about it, so he suffered through two years of a horrible preschool situation that I won’t go into here. I’m just saying I wish I had known and your friend should check with his school district about getting into developmental preschool.

The preschool’s not perfect, but they have special education teachers, OTs, SLPs, paras, and family support specialists, whereas in private preschools the classroom teachers are on their own and generally have no experience with special needs. Plus, public preschools have people (usually the paras) to change diapers.

BamBam’s special education teacher was really the person who helped me pull things together enough to get a good grasp on what’s going on with our family. I had asked other therapists and teachers and doctors about who to see or what other kinds of therapy we needed or where to find services, but they always hemmed and hawed and gave no useful answers. I was on my own with no map to even tell me where I was or what was around me. I had found out from Zoo Keeper’s diagnosis that ABA (Applied Behavioral Analysis), if done with a naturalistic approach (though I was pretty vague on what that meant at the time), could be very good for our boys. The diagnostician had no suggestions on where to go, though, so I picked a few providers out of our insurance approved directory based on distance from our house. Like a good girl, I asked them about a natural approach. Most I contacted were not taking new clients, but two were and both said “Oh, yes, we have a very naturalistic approach blah-di-blah-blah we’re so great.” I picked the one who seemed the most accommodating. It took a couple of months to get everything up and going and one more for me to realize I had to fire these people. They were supposed to be teaching my kids about communication, but they couldn’t even communicate with each other, let alone me. Plus, their approach was anything but natural. It was old school ABA, but I didn’t really know the difference at the time.

I had just fired them when I went to BamBam’s first teacher conference at preschool. After we finished and it was just the special ed teacher sitting there with me, I asked her if she knew any ABA people. She sat there for an hour with me explaining ABA and giving me names of people I could contact. I had no idea that you needed a Program Manager (PM) to make up the programs and one or more therapy assistants (TA) to actually implement them with the kids and that they don’t have to work for the same place. I don’t think she was supposed to do that, give me names and stuff, but she could see I was drowning. She is amazing and I wish I could clone her.

I called the program manager and the TA she suggested and hired them both. Through the TA, I met the mom of another kid with autism, who actually is also a friend of the special ed teacher. That mom kind of took me under her wing, introducing me to several other moms of kids on the spectrum in our school district. It’s been wonderful to have them to vent to or ask for referrals. And to offer them support in return. They are awesome and they get it in a way that you just can’t when you’re not living with a person on the spectrum.

Sparky and I also went to an evening support group for a while. It was very helpful in the same way the group of moms in the district is, except even better because it’s in a room dedicated to the group, so much quieter than the restaurants where the moms meet. But we just couldn’t sustain the evening commitment with two small kids at home.

Without more specifics, I can’t really point you to a particular book to give you more official information, so I’ve just kind of given you a stream of consciousness look at what it’s been like for us. And that’s only in relation to finding services, not what actually goes on at home with our kids. I have no idea what John’s specific issues are, but I can tell you about our boys.

  • Zoo Keeper has very low muscle tone. His hands seem particularly weak. When you pick him up, he makes no effort to hold on to you or help in any way. It’s like picking up a wiggly 50-pound sack of flour that has arms and legs. He also has a strange gait. I worry about him being bullied for the way he runs, among other things.
  • Zoo Keeper’s speech was full of echolalia (repeating things from various sources – movies, books, questions asked, etc. – inappropriately) and jargon (nonsensical speech like lalalalalala) for a long time. Any question you asked would be answered with the same question repeated back to you. He would just recite scenes from Cars at random times or sometimes use the dialogue to have a conversation with you. His speech problems these days are more along the lines of repeating things he’s said under his breath. I don’t know if he does that with other people or just me.
  • Zoo Keeper’s very sensitive to light touch and to sounds. He has motor planning issues, meaning it takes him a while to figure out the sequence his body needs to go through to accomplish a task and sometimes that task doesn’t come out right. For example, instead of tipping a spoonful of toppings counterclockwise into the yogurt container, he turns his hand clockwise.
  • Zoo Keeper’s had visual therapy because, although his vision is 20/20, his eyes have difficulty tracking. He doesn’t need glasses and it’s not depth perception exactly, but he can’t jump over an inch-wide stream of water at the park. He gets ready to jump, but then at the last second he just steps over it.
  • Zoo Keeper has issues with executive functioning. When he has a task in school, like making a construction paper snowman, he can go to the table with the other kids, but he has trouble getting started because he doesn’t know what to do. We’re lucky that he is very social and nice, so most people like him and kids in his class/group will generally prompt him on what to do.
  • Zoo Keeper’s very literal. For example, we were looking at a picture of his teacher and I waved at the picture and said hi – he said, “That’s not really Mrs. [My Teacher], Mom. It’s just a picture.” He wasn’t teasing me or anything, he was dead serious. It’s really hard not to laugh in those situations, but it would hurt his feelings. It’s great to have a kid who is on the higher end of social understanding, but it’s also crushing at the same time because he can understand that you’re laughing at him, but he can’t understand why. It makes it harder for them to hold jobs as adults because people can’t see that there’s anything atypical about them and sometimes think they’re just assholes. Scares the hell out of me. Anyway…
  • Zoo Keeper can pretend, but only if the pretend ideas come from him. His ideas generally focus on the thing he’s hyper-focused on. For Zoo Keeper, that’s zoos and zoo animals and zoo maps. Everyone always tells me that’s a great thing, so much better than spinning wheels or train schedules that many other autistic people focus on. I hate hearing that and I suggest you don’t say it to your friend if John has a focus and your friend shares it with you. Zoos are commonly accepted, that’s true, but it doesn’t make his level of focus on them any more typical and that’s the part that disrupts our lives. That and the rigidity that comes with it. For instance, Zoo Keeper builds zoos all over our house. We have to fight a constant battle to keep them out of the walkways and off the stairs and furniture. He gets very upset if anyone touches any of the animals or moves them.
  • When I say very upset, I mean self-stimulatory behaviors (rocking, flapping hands, etc.) and screaming and crying. I mean meltdowns. A meltdown looks like a tantrum, but it’s different. You can stop a tantrum by ignoring it or giving in to the demands. Not that you should give in to the demands of a tantrumming toddler, I’m just saying it would stop the tantrum. A person having a meltdown doesn’t stop for either of those reasons because he/she is no longer in control. When Zoo Keeper was little, we called this Snack/No Snack. He would stand there with tears streaming down his face and a snack bar in his hand screaming at the snack bar, “Snack! No Snack!” It didn’t matter if I was there or not and it obviously didn’t matter that he had the very snack he’d wanted in the first place, because it was no longer about the snack or me, it was about him being over stimulated. I just didn’t know it. It took us a while to figure out the common situations that were over stimulating for both our boys, but eventually we learned how to avoid situations, or modify them, to avoid the meltdowns. Most of the time. They still take us by surprise sometimes, usually when we’re in a rush and have inadvertently shortened or eliminated part of a routine.
  • Routine is very important for kids on the spectrum. And by “routine,” I mean what the kid considers the routine to be, not what the parent thinks the routine is. Sometimes those are different and you don’t know it until the explosion happens. BamBam used to ride bus number 10 to school every day. One day they sent a different bus and he had a meltdown because there was a 25 painted on the side of the bus instead of the expected 10 and I almost didn’t get him on that bus at all. I had no idea until that moment that the actual number of the bus played a role in the routine for BamBam. A very big role.
  • I told you about Snack/No Snack for Zoo Keeper. BamBam had the same thing except he didn’t speak yet, so he would just scream. I’m talking throwing himself on the ground, legs and arms flailing, screaming like someone is skinning him alive. But we wouldn’t know what was wrong. Through trial and error, we found that graham crackers usually helped. For a while I thought it was just that he was hungry and couldn’t tell us, but it was more than that. He was over stimulated, too. The way I know that looking back is that the graham crackers were always combined with strapping him in a stroller or taking him to the car and strapping him into his car seat, his preference. I get that now – a quieter place with the straps providing deep pressure that helps him focus and limit the sensory information that’s scrambling his brain. And a graham cracker, because he was hungry, which is another piece of sensory input that was coming at him and, in those cases, I think hunger was the straw that broke the camel’s back. We spent years figuring that out through trial and error while our kid was obviously in pain and we couldn’t find the source. He screamed and kicked. For a long time he bit, too.
  • Lots of autistic boys have issues with pooping. Zoo Keeper is among them. We’ve been working on and off on potty training him for four years. We’ve tried everything. He would hold it in all day at school until he got home at 3:30 and could put on a pull-up. Finally, in March, he had a couple of overflow accidents after he put his pull-up on and let the pee go. That helped me convince him to use the toilet before putting the pull-up on. It took some effort to get him used to it, but he was motivated and he did it. But that’s just urine – he still won’t poop in the toilet. He’s now started seeing a psychotherapist experienced with autism to work on his anxiety around it. We’re also taking him to a GI specialist and had him tested for celiac sprue and inflammatory bowel disease because his BMI tanked at his last check up. His pediatrician says it could be due to constipation (from withholding), but we’re testing to be sure.

I’m not looking forward to the gluten free (GF) diet that celiac sprue would mean for us. We went gluten free a year or so ago, as many autistic families do at some point, but it didn’t seem to make any difference for our boys. I actually agree that it would be better to cut gluten from our diets, but BamBam self-limits his food – he only eats crunchy orange/brown things. Luckily he eats chicken, so he gets protein, but only if it’s coated in crunchy fried batter. He won’t eat the frozen or baked kind. So for the entire five plus months we were GF, I fried a huge batch of gluten free chicken nuggets I made from scratch every weekend, hoping I was freezing enough to last the full week. We supplemented with gluten free graham crackers (which are nasty, by the way) and gluten free pizza crust with no cheese and just enough sauce to disguise the protein powder I added and to not be at all squishy on top. Fun times I do not look forward to repeating. We’ve finally gotten BamBam to the point where he will allow a non-preferred food to be on his plate without him throwing it. We’re just starting to do what his special ed teacher calls Adventure Bites, where we each have one or two new (to BamBam) foods on our plate and together we will lick it five times and then take a little bite. He doesn’t usually take the bite, but he does lick and sometimes he actually takes the bite.

Writing that, even I am thinking it sounds like poor parenting of some bratty kid. I’m sure that’s what the world at large sees, but that’s not what this is. I can’t really tell you how it’s different because I haven’t parented any neurotypical kids, but I’m sure John’s parents can.

Zoo Keeper didn’t have sleep issues, but BamBam sure does. He wouldn’t go to sleep until 11 or midnight. That’s pretty common in autism as well. Luckily for me, I had a friend whose son had sleep issues for three years before this started happening with BamBam. When BamBam had been doing this for a few months, my friend told me they had started giving their son liquid melatonin before bed. Melatonin has been a godsend for us. BamBam will only take the cherry flavored one, so I have to order it online, but it’s worth it. And I went to some seminar on autism not long after that where I was all set to shout the praises of melatonin from the rooftops, but everybody there already knew about it. It’s so frustrating that people often don’t share these secrets!

BamBam has qualified for extended school year through the school district for two summers now. He goes for three hours a day, four days a week, during the month of July in an effort to keep him from losing skills over an extensive summer. This year his summer teacher, who usually deals with autistic people transitioning from high school into the real world, the one you and I used to talk about back in the day, said that some days he would be 100% successful and some days 0% successful and she was unable to predict why. My answer to that is, um, he’s autistic. That’s the thing. We can try to control environments and predict behaviors, but you just never can totally predict what thing that you can’t see or hear is going to appear and over stimulate or somehow distress him. You’re on all the time, always on your guard because you love your child, but more than that, you don’t want to deal with the fallout from a meltdown. It’s exhausting. And it looks like you’re not doing anything because vigilance is invisible as well as exhausting. Kind of like being a lifeguard at a pool.

Speaking of exhausting vigilance, there’s one more thing your friend should be aware of, though I suggest you try not to scare the shit out of him in the process. Autistic people are prone to wandering, kind of like people with dementia are. They wander away to get to something or to get away from something and poof, they’re gone. I had no idea this was even a thing until the day I accidentally left our back gate open and BamBam wandered off. Hands down, scariest day of my life. So, maybe just make your friend aware of it. Also, whenever we go somewhere new or where there are going to be a lot of people, we put temporary tattoos on both kids. I get them here.

I don’t really know how to give you info about autism without telling you about our experience. Maybe it will help give you insight into what your friends are dealing with, or maybe I’ve just bored you for an hour for no reason. I hope it’s the former.

I asked the moms I meet with what they would have wanted friends to know when their kids were first diagnosed. Here’s what I got:

*

*I would tell my friends: please don’t ignore me because you’re afraid of what not to say. Ask me what I see, what I’m struggling with, what I know about autism & how it affects my child and how everything is affecting me, our family, my marriage. Do all this with a listening ear, knowing you know less than I do, which means using your child or parenting experience as examples of “help” are not really helpful at all.

*I would let him know that the first six months are the hardest (in my opinion). Reach out in any way that you can to comfort and lessen the isolation and confusion. Learn right alongside your friends and love that child through it all. Don’t wait for your friends to define what they need from you – offer suggestions – can I bring you dinner tonight? Need anything at the grocery store? How about I walk around the neighborhood with you after your spouse gets home? But mostly, listen. They will have a LOT of processing to do and it helps to have a nonjudgemental sounding board.

*I’d say … Show grace and patience. Grief is cyclical, and I found that even a few years afterwards, I was not a good friend at times. I was fine the first six months because I went into action mode. It was after that that was the hard part for me. I’d be angry and hurting and sometimes it would just emanate out at inopportune times. One example: I’d break the majority of plans once I made them. That hurt my friends’ feelings. Stuff like that. Grace, patience, and don’t take things personally.

*I would tell your friend to read, read, read and get to know the language. I know I tend to shy away from people who don’t get the various lingo of ABA, IEP, SLP, OT, IDEA, SPD, ASD, LD, APD, 504, para, IA…. I think it’s important to reiterate that ol’ adage that if you meet one person with autism you’ve met one person with autism. Maybe have him watch the Temple Grandin movie…and Adam…Flyfishing in Yemen… Suggest some of your favorite blogs. It’s a tough row-to-hoe. I think back to my son’s impending diagnosis – I was quite depressed because we had just finished 8 years of all sorts of therapy for our daughter (literally just released from speech therapy!) and then my husband went and had a heart attack. No time for depression! It was a very difficult time. I remember reaching out to [a friend] at preschool because she was taking photos of the classroom and said her son was a “visual learner.” She spoke my language! I still have PTSD – can you tell!?  My point is…do I have one?…um…point… Oh yes, very difficult time, and we all react so differently. This leaves me with be a good listener, be a fan of the kid, celebrate the milestones early or late as they may come….give respite care and don’t be afraid to offer because the child has ASD (my parents have yet to watch our son for us). I’m sure I’ll regurgitate more as it comes to me.

I love “be a fan of the kid.” And the part about not waiting for them to tell you how to help, but offering specific things like bringing dinner tonight – not to stay, but just drop off – or watching John for them while they go out as a couple or with their older kids. Before I had met any other parents of ASD kids there was one point when I wrote a particularly emotionally raw blog post. I think it was the one about drowning. A few of my girlfriends got together and found a therapist with experience with kids with special needs for me and offered to watch BamBam for an hour each week while I was in therapy. That was incredibly helpful to me.

Listening without offering soothing adages is also helpful. What I mean is don’t offer words like “Oh, everyone develops at their own pace, he’ll catch up” or “My son did the same thing and he’s fine now.” No matter how truthful or comforting it may seem to you, to them it feels like you’re minimizing the situation. At least that’s how it always feels to me. It’s the quickest way to get me to stop sharing things honestly. Sounds like the grandparents are sticking their heads in the sand and, besides being incredibly frustrating, it means they’ll need your friendship and listening skills even more.

One of the district moms suggested blogs, so here are a few:

http://lifewiththequirkyboys.com – that’s mine

http://theadventuresofsweetgirlandlittleman.blogspot.com/ – my friend, Sarah’s blog about her daughter who is on the spectrum

http://runluaurun.com/2013/08/20/dear-brother/ – a blog I came across the other day about dads of kids on the spectrum

I’ll give you more if you want them, just let me know.

***I originally sent my friend a link to the Autism Speaks family support toolkit. In the interim, I discovered that I do not in any way endorse Autism Speaks. They do not have any autistic people in meaningful leadership positions or on their board of directors. I’m not sure how they can be called Autism Speaks when no one with autism is contributing to what they say. There was an advisory board member on the spectrum, but he resigned in November 2013 because…well, it’s actually better if you read it yourself. His resignation letter is at the bottom of his post. They also use scare tactics, over-inflate statistics, and support scientifically unsound practices. You’re free to go look up their toolkit with no judgement from me, I just don’t want to host them on my site as a go-to source. Instead, I’m offering up this page posted on the Organization for Autism Research website. 

And here are a couple of links to articles and books that may be helpful for your friend:

Lastly, one of the moms suggested learning the lingo. Here are the definitions to the ones she listed, plus a few extra for good measure:

  • ABA – Applied Behavioral Analysis –  http://specialed.about.com/od/specialedacronyms/g/aba.htm. Old school ABA (my term) is about sitting across a table getting a kid to repeat a task. It’s very rote and can be difficult to generalize to a broader, more natural, environment. In ABA, you may be able to get a kid to say hello to the TA in exchange for an M&M (or whatever positive reinforcer you’re using), but that doesn’t mean the kid will say hello to a classmate, or even the same TA, he meets at the grocery store.
  • Naturalistic teaching – http://www.autism-help.org/intervention-naturalistic-teaching.htm. Currently, ABA is the only treatment for autism approved by the FDA and, thus, by most insurance companies. You can usually get speech, and OT covered because you can justify the need separately and they’re not specifically for autism. Naturalistic teaching practices can be applied to many therapies, including ABA.
  • FloorTime – http://www.autismweb.com/floortime.htm – BamBam’s speech therapist, who is awesome, is adamantly anti-ABA because of the rote learning. Her methods are a lot like FloorTime. She can get away with that because she’s doing speech therapy, but it wouldn’t be covered by insurance if it was used to treat autism exclusively. Which is why old school ABA still thrives.
  • IEP – Individualized Education Program – the document established by the school with input from parents that contains the plans for educating the student for the year. For BamBam, we generally have an IEP meeting every year, but I think after preschool they’re only required every three years, with annual progress reports. http://www.education.com/reference/article/individualized-education-program-iep1/
  • FBA – Functional Behavior Assessment. I’m not a professional, but basically you take a few days to observe the behavior you want to look at, noting when it happens, events immediately preceding it, consequences of the behavior, etc. Then you look for patterns showing what’s causing the behavior and how to better deal with it.
  • BIP – Behavioral Intervention Plan. This is the plan that (hopefully) results from the FBA.
  • SLP – Speech-Language Pathologist
  • OT – Occupational Therapist
  • PT – Physical Therapist
  • ASD – Autism Spectrum Disorder
  • LD – Learning Disability or Learning Disorder
  • PECS – Picture Exchange Communication System
  • Visual Learner – Means you learn better through seeing pictures, colors, etc. Lots of people with ASD use PECS to communicate. It helps both our boys to have a visual schedule they can reference for what they’re doing that day or during a session. Without it, BamBam has trouble understanding what we’re going to do and he’s much more likely to melt down. He loves to carry his schedules around with him and go through them with you step by step ad nauseam.
  • Visual schedule – http://www.specialed.us/autism/structure/str11.htm BamBam started out with First-Then schedules, which are just what they sound like: First ____(with a picture of whatever it is), Then ____(with another picture). That’s how I got him to wash his hands before he ate for a long time, with pictures that his ABA Program Manager drew for him a long time ago. If I didn’t show it to him and go through it, he wouldn’t understand that he would still get his food. I haven’t shown it to him for a while, but I still use the language sometimes when he’s over stimulated.
  • 504 – Refers to section 504 of the Rehabilitation Act of 1973. It’s a plan for accommodations the school will make for a student with a disability (http://www.ldonline.org/indepth/accommodations). When Zoo Keeper was first evaluated in our district, they tried to offer him nothing, no accommodations at all. Then they said oh, yeah, we’ll do a 504 plan. I pushed back hard and stumbled upon the right words to get him an IEP. I thought autism would be the key, but turns out it was regression. I happened to mention he had begun to chew on our coffee table – I caught him several times with actual wood in his mouth – and that was enough.

    Exhibit A

    Exhibit A – Chewed up coffee table

  • Para – (paraprofessional educator) – Also known as instructional aides and teachers’ aides, these individuals provide assistance to teachers in the classroom. They do not provide primary direct instruction, but may help clarify material to students through home language or other supports. In classrooms funded through Title I, instructional paraprofessionals must have at least an Associates’ degree or its equivalent, or have passed a test. (Source: http://www.ldonline.org/glossary)
  • IA – Instructional Aide – see para. In our developmental preschool, the general education teachers are IAs and are not required to have a teaching certificate.