I’m one of the first people to encourage other parents to chuck the milestones books out the window. The ones that tell you what your child should be doing at 75.34 weeks to me do little except make you increase your antacid budget every month. The obvious exception to this is that if you suspect that your child is very delayed in one or more areas, go figure that out both through reading and with your pediatrician and other professionals. There’s a big difference between being 1.8 weeks behind and 18 months behind.

This is probably a blinding flash of the obvious for parents of kids with delays, but after a few months in Early Intervention and therapies and whatnot, you completely lose touch with what ‘developmentally normal’ is. It really is a time warp. At this point, I would have a hard time telling you how far behind our son is. We’re doing things on J-Man Daylight Time and ignoring how most of the rest of the planet tells time. He’ll do it when he does it, has become our motto (at least on our good days).

With J-Man showing some exceptional skills in some areas in the midst of being very delayed on most everything else, we’ve felt the need to go back and figure out what ‘normal’ is for an almost-three-year-old. At a parenting level, I’m not sure how much I’m concerned about this at this point. Like I said, he’ll get there when he gets there, at least I keep telling myself that. However, for purposes of getting him into preschool and doing his IEP, we need to get some handle on where he is (that Present Levels of Performance thing - with the wonderful acronym PLOP).

It’s hard to find to milestones charts that translate well into autism-ese. The obvious problem is that your autistic toddler could easily be two or more years plus or minus what is developmentally ‘normal’ for a three-year-old on these charts. He or she will likely be scattered all over the chart. You have to transpose quite a bit with them, but after thinking through it a bit, I still could get a rough idea.

At the bottom of this post are some links I found to help us get started. Hopefully they’re useful to you as well. I can’t vouch for their complete accuracy or anything, but they’re consistent enough with each other for what I was looking for.

I did discover that J-Man’s letter identification is probably on par with a level of 4-5 years old (he’ll be 3 in a couple of months if you just got here), just minus the ability to say some of them. If he’s in a relaxed state, he can point to any letter you ask for. Lowercase still confuses him for a good half of the letters, but that’s understandable. He’s getting there with numbers and has consistently identified five colors (again, when he’s in a relaxed state). With colors, I usually give him three to choose from (solid-color, construction paper squares) and ask him to point to ‘red’ or whatever. If he goes 10/10, he’ll get the proverbial gold star and we’ll start trying to identify colors in other contexts.

[Worth nothing that if you say something like "point to the green frog" he just stares at the floor. Combining a color and an object - 'green frog' - is too much to sort through as he has to figure out what's green and what's a frog at the same time. So, we just do "point to green" at this point.]

The key is the ‘relaxed state’. If he’s calm, he can do this stuff one to two years beyond age level. Otherwise, it’s a lost cause. Hitting that sweet spot is hard, which is as much the battle as anything. This is totally a sensory processing issue, which we’re working on constantly.

OK, enough of my rambling on. Here are the links I stumbled on. These center on speech, language, and literacy milestones. If you know of others, let us know.

http://www.capitolent.net/speech-milestones.htm

http://www.horizonspeechcenter.com/milestones.html

http://www.madison.k12.wi.us/tnl/lilm/early_literacy/preschool/milestones3-5.html

http://www.childcarelounge.com/articles/xlearningleteracy.htm

[Many good things have been happening at Chez Flashlight in the last 24 hours. Mary decided to make S'mores last night, and we have a guest poster! The expert commenter known as Gigi and her daughter Stephanie are about to wow you with some brilliant, valuable advice about Individualized Education Programs (IEPs).

Gigi is a retired special needs teacher and guidance counselor of 31 years. Stephanie is a speech language pathologist (SLP). So you know you're getting top-notch information here. We're honored to have you two post this. Thank you!! - Tim]

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If someone has not yet given you a copy of your rights through IDEA (Individuals with Disabilities Education Act), ask for a copy, which they are required to give you. This is your bible and you should never attend an IEP meeting without it. Here is a link to download the most recent (2007) pdf format Resource Guide for Parents. Other IDEA highlights are noted throughout.

Although IDEA is federal, every state is required to have a Protection and Advocacy system. Check for yours at the national website at www.napas.org.

You have a right to see all the assessment results and meet with the assessor(s) BEFORE the first IEP meeting so you have time to absorb it and get questions ready.

Educators are famous for turning everything into acronyms (see IDEA above and many others below) and use them as if everyone knows what they all mean. If you don’t, ASK!! Every 5-8 years or so, all the “label names” are changed to more politically correct ones, so just as soon as you learn them, they’ll all change. Personally, I think they do this just to screw with us.

Follow your gut. If something sounds fishy or not quite right, it probably isn’t. Ask questions, make requests in writing to keep the IEP team accountable, and don’t take no for an answer the first time. You might even tape record the meeting to keep everyone on their toes. Some IEP teams will be pretty ticked off by this and there may be much eye-rolling. Smile and insist. Remember – they may be the education experts, but YOU are an expert on your kid!

If you request a particular service and are told it is not possible or that your child does not qualify for it, stand firm. Request the assessment for that supports the need for the service you request. If the results don’t jive with what you think your kid needs, you have the right to request an IEE (Independent Education Evaluation) provided at PUBLIC EXPENSE. Again, make that request in writing.

The primary goal of the IEP meeting is to place your kid in the Least Restrictive Environment (LRE). This is especially important if full or partial inclusion in a regular classroom is likely and/or desired. Optimally, full inclusion with modifications should be the initial goal, working back to more restrictive options as needed. MEASURABLE goals and objectives should be written BEFORE placement is determined. In fact, it should shape how placement is determined. Modifications can range from providing an aide to providing visual cues, speech therapy, etc.

As I read through this list, it struck me that most of these tips either hint or scream at an adversarial relationship with the school district. Let me hasten to point out that most school districts really do the right thing, really have your kid’s best interest at heart and are really there to help you. They have been through this process many, many times before, to the point where it sometimes seems rote or rubber stamped. You may only need to gently remind them that although this is their 1,648th IEP, it’s your first. Knowing your rights is your responsibility to your kid, nonetheless.

(This is Stephanie talking now-Gigi’s daughter, the SLP).

The only things I have to add is regarding the specific goals/objectives, etc. More than likely they will be written before the meeting. If you don’t agree, want to add more, etc, it may seem time consuming and you may need to meet again, but it is possible.

Also, you mentioned that you were concerned about how to make the skills that J-man is showing (i.e. naming letters, colors, etc) into functional goals for the IEP and how to generalize them to naming other items. I may be totally off on this, but I do believe this is fairly common with kids with autism. I think it has to do with the fact that letters, colors, numbers are considered “rote” naming or rote memory and that naming other objects is more of “labeling”. I can’t remember the reason behind it, but the teachers will probably be familiar with this type of learning and memory and will help to incorporate that into his goals. AND those skills are very functional for a pre-school classroom, so it should all go hand in hand.

About AAC devices (augmentative and assistive communication), I know that the IEP process is different in each state, however I do believe that every IEP has a section that asks about assistive communication evals, or have all appropriate evals be completed (may not specifically say AAC). You can have that sections checked and then they are required to do an AAC eval (separate from the typical speech eval, etc.

As far as the actual eval and devices, I would recommend that several devices be tried out with J-man before anything is chosen. There is a TON of different types, software, vocabulary that should be looked at to figure out which one would best suit him. I know that some companies will even rent them out to see if they work for a specific child. I know that this is a long process and you may get frustrated, but keep with it if it’s what you feel is best for him. PLEASE feel free to ask me any other questions!!

Here are a couple of pictures of the J-Man working at his desk in his home classroom. These originally were just going to be staged shots, but he actually sat there and worked the whole puzzle by himself, and without either of us sitting there keeping him from running away! That and he’s having fun!

He looks like such a big boy in these pictures. My God how the time flies.

That last picture is exactly what I’m talking about when I say seeing how proud he is of himself when he accomplishes something makes any stress we may feel seem completely insignificant.

We met with the county people yesterday to see if the J-man would “qualify” for the school-system-run preschool. We had to take the J-man with us in an un-napped state, because the ONLY slot they had available was at 3 PM. You know, right in the middle of rest time. Good times.

The people were nice and all, and they think the J-man is adorable (because he is) but seriously, the woman who took minutes? Has no business ever writing again. And she’s a teacher. Also, the coordinator may want to re-think her strategy of “sharing” her monitor with me because obviously “sharing” is “inconceivable.” (”You keep using that word. I do not think it means what you think it means.”) Sharing does not mean briefly flashing the screen towards me, and then choosing what you think is best without consulting me.

Today I had to send the coordinator an email giving her all the errors in the reports and minutes. She was NOT pleased with me, and kept insisting that something had happened yesterday, when it obviously had not. Really, why would I tell you that my child knows his numbers, when he doesn’t? It seems bizarre, since from what I understand, parents should make their child’s issues look as significant as possible to get the kind of support actually needed. *sigh* We went back and forth, and finally she said she would just attach my corrections to the bottom of the report (where they are oh so likely to be read *eyes rolling wildly*).

Not exactly the way I wanted to start our relationship.

In completely unrelated news, my boss’s wife is in the hospital today being induced with their newest child. Last I heard, he was tracking the contractions via a spreadsheet. I seriously work for a geek. But a nice geek.

Assuming you have good relationships with them - which to a person we’ve had with all of ours - your child’s therapists become your friends; they leave and you mourn. They bring you the one blessing you want as much as anything. They help your child take the one step at a time they need in order to grow into the fullest expression of themselves that they can.

J-Man’s developmental therapist is moving away this week. Her last day is tomorrow. She’s worked with him for about 15 months now - almost half his life, and far longer than anyone else. When she started, he would become immediately frustrated and upset when you tried to get him to do most anything. Stacking two blocks together or putting a big plastic coin in an even bigger slot looked like asking him to climb Everest. Even being near an open container of Play-Doh would make him gag. Touching fingerpaint would make his little sensory system go into red alert. He had at best a handful of random, unclear words. If an activity took more than two seconds, he couldn’t sit still for it or complete it. It’s hard to realize that when we started working together, he also couldn’t walk on his own. And it would be some time before he did. He had only very recently started sleeping through the night at that point. We were worried, exhausted, and growing more distraught by the day. It was a very hard time.

I see how he still struggles, and every day I grapple at least some with keeping perspective and staying positive. With her leaving, it’s made me look back and see just how far he has come. She was there when we had no idea what was going on, she’s seen us through his autism diagnosis, and she’s given us the tools and resources to know where to go next. She’s given us a wealth of information on how to set up his new home classroom and a home program to complement everything else he’s doing. Over the span of the last few months, she’s poured out so much of what she knows into us. We’ve learned more than I imagined possible, and we have a plan. I hope I’ve been a good student.

She has given us something words cannot describe, but those of you who have been through this know exactly what it is.

In a couple of months, we’ll also say goodbye to his other preschool teachers and therapists as we move into the county school system. Her departure starts this season of transition and mourning that we won’t get to see these people every week who have meant so much to us. I’ll feel this way a lot over the summer as we keep saying goodbye. They have all been so wonderful to us. It’s impossible to adequately express our gratitude to them. They’ve kept us upbeat when we were struggling. They love every kid who walks in their doors and steadfastly refuse to give up on anybody. If they ever wonder how much their work matters in the grand scheme of things, they need only to ask people like me.

I’ve realized that this isn’t a sprint or race; it’s a marathon relay. It’s the kindness and commitment of these once-strangers who have seen us through this far. It is because of them that we have hope in the people we have not yet met and things that we have not yet seen.

Whether they are developmental, occupational, speech, physical, or another other kind of therapist, the ones who enter our lives and offer their hands, heads, and hearts to people like us are often unsung superheroes.

They are worth their weight in gold, and probably get paid their weight in recyclable plastic.

They are reimbursed for gas at about the same rate as pizza delivery people - except they can’t take tips.

They are energetic Macgyvers, making limitless supplies of therapy aids out of egg cartons and dollar-store junk. They don’t even need duct tape, though give them a laminator and they can rule the world.

They will stand on their heads if need be. They will come up with stuff that boggles the mind.

They see our son achieve his latest miracle, and they cry, too.

They’ve never grown up, and we love them for it.

They can turn animal crackers into an epic story.

They know how to work an inscrutable health care and insurance system to get what your child needs.

They will hold your hand and believe, even on the days you can’t. They know when to talk and when to stay silent.

They believe every child has a bright future. They don’t give up. They love each and every child just because. No one needs to prove anything to them first, and no one needs to earn their love.

They work for sticky hugs and don’t complain about the rest.

They still deserve more money.

As families come and go and as they themselves move from place to place, they often don’t get to see who ‘their children’ become. In many cases, at age 3 many of those kids move on. I hope that at 13, 23, or anywhere in between or beyond that I’ll be able to send them a story or two about the kind of person J-Man grows up to be - better yet that he will be able to write to them - and to say thank you for everything. They are as much responsible for the progress he has made as they are for all the things he will yet discover how to do.

Thanks, Meg. We owe you. May the dollar stores always have what you need for your magic therapy kits, and may all your days be blessed.

J-Man had his appointment with the audiologist today. No one really thought he had any hearing issues; this is just part of the process for getting into the county school system. All this is for preschool and therapy services and completing the umpteen steps required before we have his IEP meeting in August.

The audiologist couldn’t find any problems, said from what she could determine (he didn’t exactly cooperate with some of the tests) that he was within or near normal ranges for hearing at the various frequencies, and cleared him to continue with the next round of evaluation processes. I’m assuming that if they had found anything that they would want to address any hearing issues first before doing other evaluations, which would make sense.

They were very nice and understanding that this wasn’t something he was going to particularly care for. Closing us up in this small, cramped, acoustically-calibrated vault (there were three adults and him in there…) on a 95 degree day wasn’t exactly our idea of a good time. It was at least in the 80s in that room. We were all sweaty and grumpy by the end of it.

We figured they were going to say he was deaf because he pretty much ignored them most of the time, but that would be normal for him during evals. Since he doesn’t really sign or give any readily understandable cue that he understands what you say unless he can go point to a picture or perform some limited action, it wasn’t all that clear what he was doing.

I was prepared for the usual conversation that objective data doesn’t paint the entire picture, blah, blah, that we normally do. As a pre-emptive strike and for good measure, we showed them that he could fill in the blanks for parts of “Old MacDonald” and the ABCs. That perked them up a lot. I think it helped. They realized he does understand stuff.

They couldn’t do a full workup since he was uncooperative at times, but they said his hearing of voices and music were fine (no shock there) and she was good to clear him to go to the next thing in the bureaucratic gauntlet, of which I’m starting to get immune to.

Unintentionally funny moment - She tried sticking the automatic measuring doodad (technical term) in his ear to get more data - more or less the same one they use on babies at the hospital - but that requires him to be both still and quiet. Heh. No chance in Helena of that ever happening when someone is messing with his ears.

We did manage to get enough of a reading for the thing that measures eardrum vibration and any fluid that might be in there. It doesn’t measure hearing, but it does measure that at least the eardrum is moving and fluid isn’t screwing anything up. It doesn’t require him to be quiet, and Mary and I basically sandwiched him into a hug long enough for them to measure both ears. No problems there! Yay!

In a long string of depressing evals, this was a bright spot. On to the next thing (whatever it is). W00t!

As we develop this hybrid of therapy work for us to do at home in between J-Man’s work with his therapists and his time at school, we have been drawing a big blank on one critically important piece of the puzzle. I call it ‘reward pellets’.

The concept comes basically from how they train animals. They do something right, they get some sort of reward. Often, it’s a food pellet.

This may sound completely silly in a conversation about autistic kids, but it’s an important part of the structure and motivational processes needed to keep moving forward. The more you talk about this stuff, the more it sounds like training a schnauzer. But, it is what it is, and you get over it eventually.

If you have an autistic child, this probably isn’t news to you. In certain instances, if your child completes a new task, responds to your question, names an object for the first time, or something along those lines, you’ll give them a special treat or reward of some kind. We tend not to do this quite as often as some therapies lean toward, but we do have “you’ve worked hard, you’ve earned X” as part of the equation.

As part of the home classroom work we’re devising, we’re coming up with a system of ‘picture scheduling’, a way of using visual cues of some sort to illustrate how we’re going to sequence something, whether it be daily activities or the classroom tasks we’ll be doing for that ’session’.

For example, on his desk, we now have three (or four for lengthier sessions) colored shapes (red heart, green square, blue circle, plus yellow star for the fourth) in a row across the top of the desk. Next to him (on his left) is a bookshelf with three (or four) open-top plastic bins with those same shapes in the same order.

Our goal will be to get him to remove the first shape from his desk (red heart) and match it with (stick it on) the red heart on the bin (it’ll stick on with the velcro), do the activity in the bin, put it back in the bin, put the whole thing in the ‘done basket’ (a large clothes basket on the floor), then move on to the next shape and activity, and so on until we’re done.

[I'll get around to posting a picture of this soon.]

Here’s the missing link. At the end of the row of shapes is (or should be in our case) a picture of the ‘reward’ (also known as a ‘reinforcer’ or ‘reinforcing object’ I think). For some kids it might be a picture of an M&M or a favorite toy or something. The idea is that it should be something special and not otherwise part of the classroom routine.

Our main problem? J-Man isn’t really attached to any toy, food, or anything else for that matter. He’s really attached to us, but it’s not like we’re going to reserve hugs for rewards or something.

Our partial solution is to use pictures of his favorite TV shows. When he completes all the tasks, he gets five minutes of a show. This means we have to cue up the DVR to the right place beforehand so that it will just show five minutes and not abruptly end mid-show. Easy enough, though. The hope is that this whole cycle will take about 15 minutes - 10 for the activities and 5 for the ‘reward’ - with the goal of completing four cycles in a row (or an hour total, however that works out). I’m not real jazzed about using TV for this purpose, but we’ve been low on options.

If the end of those activities mean the end of the classroom time for a while (i.e., we’re off for a couple of hours), the picture could be of his swing set, which is NOT something we could do for five minutes without inciting a riot. Plus it’s getting so hot that our ability to use it will get limited soon.

That brings us to our latest discovery, which may very well be the reward we were looking for.

Going on the “keyboards are the best things since cheese toast” revelation, we discovered the LeapFrog ClickStart My First Computer. It’s a regular QWERTY keyboard like ours (he would have noticed if it wasn’t) and the games included on the console can be simplified enough that all he really has to do is sit there and type. Letters appear, it names letters out loud, and generally fun things happen. We think it’s cute.

He thinks it’s so great he’s almost beside himself.

Yay!

To make sure he doesn’t just use it to zone out, we sit there and ask him to type a particular letter (he may or may not), encourage him to try various parts of the keyboard (he’s pretty fixated on ‘K’ because he recognizes it and he can say it), and generally be there to be interactive. He also was getting very excited, which results in lots of hand flapping and general overload, so we’re there to do the normal stuff we do to help him stay centered (deep pressure, massage, singing, etc.)

The obvious question is, if it makes him do that and you have to center him, why do it? Mostly because his best learning takes place in a certain zone (we call it the ’sweet spot’) where he’s not too over or under-stimulated. Under-stimulation is just as stifling to his ability to do anything as the overload is. He can zone out or get overloaded in just about any activity. The ones he’s really excited about do make it hard for him to settle down, but that’s part of the process of things he needs to learn. By being there and being interactive (and not letting him drop out or go into his own world with it), we turn it into a quality activity.

Anyway, looks like Leap Frog has provided our ‘reward pellet’ for now.

Question for the masses, particularly those whose kids are attached to very few things - how do you handle the reward thing?

I originally wasn’t going to weigh in on the recent, reprehensible treatment of Alex Barton by his kindergarten teacher in St. Lucie County, FL because it’s been written and blogged about at length all over the Web. I didn’t really know what I could add to it. But prominent bloggers who write about issues related to autistic children are calling for all who stand with Alex and his mother, Melissa Barton, to post their thoughts and show solidarity both with them and autistic children everywhere.

To briefly catch you up if you missed this, Alex Barton is a five-year-old boy on the autistic spectrum who - I can’t believe I’m writing this - was voted out of his kindergarten classroom after his teacher, Wendy Portillo, polled the class about whether they wanted him removed from class for the day. The class voted for him to leave by a count of 14-2. I wish I was talking about some alternate, bizarro, Survivor-esque universe, but I’m not.

[To catch up on the latest news, here's an article from the Palm Beach Post. There's a great post at Asperger Square 8 that you also must read.]

For what my thoughts are worth, here they are.

One of my biggest fears for J-Man is that other kids will regularly bully him in school just because he is ‘different’. Honestly, I fully expect it, and the hurt I already feel is terrible. He most likely will start preschool in our county’s autistic children’s program this fall. I confess my breathing gets shallower just writing about that. This will be a major transition for him, obviously, and I don’t need the fear of bullies making that worse. But that will be something I’ll have to deal with.

When I read that afterwards Alex kept repeating “I’m not special,” my heart broke. I tried to imagine J-Man sitting in the floor repeating those three words over and over again. I couldn’t. It hurt more than I could bear. Even writing this hurts. I can’t imagine being Melissa Barton right now.

As parents, we need to know that we can count on our children’s teachers, and for the most part, I believe we can. J-Man has had excellent teachers and therapists so far, and we are thankful every day for them. We need to know that people at our schools will be there to help our kids be the best they can be and serve as a voice that counters bullies and other people who might belittle them. We need to know we can count on them to treat our children as special and uniquely wonderful, not fear having to count them among the bullies.

Regardless of what anyone believes about children inherently wanting to rebel against their parents and adults in general, adults still have an incalculably powerful influence on them. When an authority figure teaches children, especially at that age, that excluding people who are ‘different’ from the community is OK, what do you think they are learning? What do you think that will translate into as these kids progress through school and into adult life? What kind of future are we creating as a result?

In a world overflowing with messages to exclude and reject those we do not like, those who are different, and those who ‘make us’ feel uncomfortable, there must be voices that proclaim the inherent and immeasurable worth in each person. We must be those voices.

Every kid needs the authority figures in their lives to accept them where they are. That doesn’t mean we’re not supposed to set boundaries and have rules and expectations. We start with a fundamental acceptance of the truth that every child, regardless of their abilities, has infinite worth. That is the foundation we must build everything else off of.

There are truths in our society that are self-evident and inviolable. We don’t get to put these things up for a psuedo-democratic vote. You don’t get to decide Alex’s or anyone else’s innate worth as a person and member of our society. That kind of world shouldn’t be allowed outside your TV. If you watch that kind of junk and take it seriously as something to emulate in your ‘real’ life, it’s time to go bury your TV.

In case I haven’t made my point clear yet - You don’t get to extinguish his light or anyone else’s. Period.

Shaming like this just leads to greater and deeper shame, creating this endless, horrible, destructive cycle. Kids who have special needs will get enough shaming in their lifetimes to make our hearts ache every day, if not every hour or minute. They need to know we’re sticking up for them.

They need to know that the people who love and value them simply for who they are will be ready and able to champion them no matter what. They need to know that our voices are stronger than those who either through intention or ignorance would tear them down. I hope in some way that my words will help him know this. And I hope every day that I will have the courage of strength and conviction to stand for them, no matter whose children they are.

There are lines you simply do not cross, and in this act, this teacher crossed it. As parents, we must hold that line without compromise against anyone who willfully or ignorantly breaches it. We are the first and last line of defense for our children. If not us, then who will?

What do I think should happen to Ms. Portillo? Schools have zero tolerance policies toward students, and I think teachers should have similar expectations and consequences for such egregious actions. She may just have been poorly trained and made a ridiculous error in judgment. I don’t know. And at the moment, I’m having a hard time caring about the difference between intent and poor decision-making.

Regardless, I think termination of her employment and suspension of her teaching license would be the minimum I would ever accept as a parent. If she finds some way to show by her actions that she has earned the trust needed to be a teacher again, then I believe in reconciliation, but I imagine that will be a long time coming. But my advice to her would be, don’t be surprised if many people neither forgive nor forget. You just don’t mess with our kids, and we won’t take ignorance as an excuse.

I try hard to find something to build from in every situation, no matter how awful the whole thing seems. Here’s what I found to hold on to from all this.

I’m heartened by the overwhelming support and action that has flowed forth from parents and bloggers of every kind from every corner. The world of autism has many factions, many controversies, and much disagreement, but mess with our kids and we will act as one voice. Our children are more important than our differences, and this has reminded us of that.

In the Internet age, we are serving notice. Acts such as these will find the light of day. We will make sure of it. We are watching and listening. We aren’t some tribal council; we are the entire village. We have spoken, we are speaking, and we will continue to speak until our children are treated with respect and dignity.

Given the challenges we face every day, we do not give up easily (or at all) and we have developed incredible endurance. We’ve had to. Autism is an endurance event. It requires all of who we are. We’ve learned that this is what it takes to help our children grow and thrive. And we recommit ourselves to it every day, by both necessity and by choice.

I wish my son didn’t have to work so hard at everything, but he does and does so bravely. He inspires me every day. If I can love him through his challenges by the sheer force of my will, I will. I celebrate him just for who he is. He has become my teacher. Maybe when this teacher decides to become the student for a while and learn what all this means, she will understand what all the Alexes of the world have to offer us.

Also, two kids - for whatever reason - voted against this abominable act. It’s been 30 years since I was in kindergarten, but I don’t recall going against your peers being any more popular then as it probably isn’t now. I don’t know their motivations, reasoning, or feelings about their choice, but I applaud them regardless. My hope for them is that their light of compassion, decency, and their sense of right and wrong is such that no teacher, adult, or peer can ever take that away from them.

I close with two messages.

To Melissa Barton - There’s nothing I can really say that could possibly relieve you of what you have to carry right now, but I will say this. We’ve got your back. You are not alone.

To Alex Barton - You are wonderful and special and perfect just the way you are. You are unique in all the world. Don’t let anyone ever tell you otherwise. Let your light shine. Let it shine, let it shine, let it shine!

With some regularity, conversations come up about what ‘autistic stuff’ J-Man does and doesn’t do. I know some of these are stereotypical traits, but many of these come out of evaluations and the various ways we’ve tried to figure out his diagnosis.

So for the benefit of our readers who are wondering whether their kid is similar to ours, here’s a description of him and what he does, kinda does, or doesn’t really do. We’ve been recompiling this for his upcoming (re-)evaluations and preschool/IEP stuff, so we thought we’d share.

Obvious disclaimer: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be a problem, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated. Don’t just rely on some random people on the Internet. You’re smarter than that.

Reminder - he’s a bit over 2 1/2 years old. A doctor (psychologist with a bazillion years of experience at evaluating kids) diagnosed him with an autism spectrum disorder. He said that at J-Man’s current age, labeling him with “mild”, “moderate”, or whatever wasn’t terribly useful and likely to be inaccurate. He’s also been diagnosed with sensory processing (or sensory integration, depending on who you talk to) issues, apraxia, and motor planning issues, among other delays.

Significant issues he has:

• Severe speech delay - Obviously, yes. We figure he’s going on 18 months behind. The belief is that he has apraxia, which isn’t at all unusual in autistic kids.
• Communication problems - Struggles to communicate in other ways, too; sign language, etc. isn’t in his repertoire. Unless he can pick it up and bring it to you, he has a very hard time asking for things. He also will use your hands to do stuff rather than his own, which is something we discovered is a characteristic of autism.
• Rarely points at what he wants - That’s pretty self-explanatory. He tends to use much more broad movements, which are very difficult to figure out.
• Hand/arm flapping - Flaps his arms when he gets excited or overstimulated. Primarily he does this in the car (the moving scenery apparently is too much for him to take in) and in places like the store (especially ones like Target that are bright, busy, and red). It’ll also happen if he’s watching some TV show that gets him excited. Interestingly enough, he usually looks happy while he does it. The suspicion is that this is a lot of ’sensory overflow’ and doing this helps him order and calm his system.
• Learning problems - We don’t know cognitively where he is because he’s hard to engage in those sorts of activities, but he definitely does way better at puzzles and things like that when he’s calmer. We suspect he knows a lot more than he’s shown.
• Eye contact - Pretty poor, but it seems to be getting better lately. We can get a few seconds of it with people he knows well, not so much with strangers. He definitely is better with this when he feels pretty balanced sensory-wise.
• Sensory problems - Oh yeah; feeding, vestibular, proprioceptive are the biggies. We’ve known he’s had sensory integration issues since forever, and they still affect him a lot. The last couple of days he’s taken up sucking his shirt to soaking again. Yuck! He still loves exaggerated movement (throw over your head, swinging outside, bouncing on the exercise ball) and seeks out deep pressure (big hugs, firm back pressure). He also sleeps wedged in the corner of his bed and was a total swaddle baby. He finds sticky or slimy stuff on his hands really icky (finger paint = yuck). He dislikes most food textures, and will gag at ones he really hates. He’ll sometimes gag when he’s sensory overloaded regardless of what negative sense it is.
• Seriously picky eater - Eats just about nothing except toast, chicken nuggets, crunchy stuff like chips, and purees. He also has some reflux, but that’s minor at this point so I doubt it affects much here. No other GI issues have been indicated.
• Lack of imaginary play - He doesn’t really engage any of his toys in this way; he can be playful with others but I wouldn’t really call it imaginary, nor would I call his play with his peers consistent or much like what you’d expect for his age. His level of play is very cause-and-effect, meaning he presses some button and the toy does something back at him. It’s a much more literal way of interacting, which is another common autistic trait.
• Social awareness - He usually doesn’t acknowledge other kids in the room, but he’s pretty good with adult women (he’s pretty flirty). At preschool, he’s typically off doing his own thing.
• Joint attention - The fancy term for wanting to share with you something he finds very interesting. Example: Child sees a car, picks it up, shows it to you, and then looks at the car and then at you to make sure you are seeing it with him. J-Man does this very rarely, which is another characteristic of autism.
• Responsivity to order in learning - This isn’t so much an issue as it is a common strategy for autistic kids, but he responds very well to doing his ‘learning work’ in an orderly environment, at his little desk, doing specific tasks, without a lot of distractions. Imposing structure has dramatically helped out with his learning and growth.
• Travel - One or more nights away sucks; in the car is normally fine; he just won’t sleep well at all anywhere else but home - two nights away is pretty much our limit before everyone is sleep-deprived and mental.
• Fine motor issues - He has a very hard time manipulating certain objects; e.g., hard to feed himself with a spoon without a lot of help, though he has made great strides in the last week.
• Motor planning - He has a hard time figuring out how to accomplish many tasks, and only occasionally will successfully do something you ask him to do. If it requires a sequence of more than a couple of steps, he pretty much can’t do it yet. “If you’re happy and you know it stomp your feet, clap your hands, and shout Hooray!” is incredibly frustrating for him. You can see him trying to work out how to do it, but his body won’t comply. Yes, it really pulls at my heart to watch him struggle like that. We’ve wondered whether this has made sign language nearly impossible for him; we’ve been trying for over two years. That said, he has made great strides (literally) in the last week or so in going up and down steps by holding on to a railing or your hand. This is a major leap forward for him.
• Responding to his name - This is sort of borderline to me, but he doesn’t do this that well; it’s not so bad we can’t work with it, though.
• Walks on his toes - Yep, but usually only in short intervals.
• Poor muscle tone in his trunk/core muscles - In his arms and legs, he is as strong as an ox on steroids, speed, and Starbucks, but he ain’t going to be on 8-Minute Abs any time soon. Related stat: I weigh 225 and he has knocked me flat on my butt from standing.
• “Flight Risk” - If you put him down, he’s usually going to take off running. We’d never be able to set him down in a store or a mall. If we did, he’d be off to the races. This happens outside too. It’s exhausting to say the least.

Issues that aren’t too bad:

• Fixation or attachment to a particular object - He was pretty attached to Glo-worm and his Leap Frog caterpillar early on, and now he’s pretty fixated on his piano keyboard and other things that make music, along with some of his books. He can get pretty zoned out on them, but not so bad that you can’t break him away from it with some effort or that he doesn’t get up eventually and go do something else. We do have to sometimes hide whatever it is so we can keep him focused on us enough to do his therapy work when the zoning out gets to be a problem.
• Emotional awareness - He’s pretty good with understanding people’s emotions, especially when people are laughing or are sad.
• Sensitivity to routine - We do keep a routine, but mostly out of habit from back in the days he wouldn’t sleep and because it helps him learn better; we can vary it without any real issues as long as we’re not out of town and as long as we give him some downtime in the afternoon.
• Needing physical order - It’s very important to him to have all the doors closed wherever he is. This is annoying sometimes, but not a big deal in the grand scheme of things. I’ve noticed that there are a couple of toys he wants in the ‘right place’, but why these few and not all the others is a mystery to me.
• Sleep issues - Rarely naps anymore but does sleep through the night (12 hours on average); this is SUCH an improvement over the first 18 months when he never slept through and often got up every 2-3 hours.
• Gross motor - He was a very late walker (almost 23 months) so this used to be a real problem, but he’s pretty self-reliant with this now even if he’s still a bit behind. He definitely has his own style, but he rarely falls. Going up and down steps upright (though still with a lot of help) is a recent highlight. There are a lot of steep stairs around, and heights freak him out, so this is a real challenge.

Issues we haven’t really seen:

• Regression - His development has been very slow on various fronts, but he still has steadily improved. We have setback weeks from time to time, but our overall trajectory is toward improvement. He didn’t have a bunch of words and skills and then lose them like some.
• Self-destructive behavior / self-injury - He’s smacked himself in the head a few times, but nothing at all that we’ve worried about. I can’t even remember the last time he did this.
• Uncontrollable tantrums - Never; he does a great job dissipating his frustrations and rarely pitches a fit for more than a couple of minutes. He does some pitiful drama and then we move on.
• Repetitive behaviors - Very little except for the hand/arm flapping.
• Lining stuff up/compulsive organizing - Pretty much never. Our house is often a wreck and he doesn’t seem to care. Like I said before, he has a couple of things that seem to have a ‘right place’, but it’s so minor that it barely registers as anything more than a quirk to us.
• Fixation on orderliness - Doesn’t seem to care if we move stuff around.
• Detachment - He’s very attached to us, loves being with us, and often wants to be held. If you’re familiar to him, he’s very loving. He’s hit or miss about strangers, or even acknowledging that they’re there.
• Aggression - We’ve had it repeated to us several times that an aggressive act is not the same as aggresion. He’s so fidgety sometimes that he can be rough as he rolls all over you rather than sitting still. That said, he hasn’t struck out in anger that I know of.
• As far as we know, his hearing and vision are fine based on previous tests.

Phew. Got all that? We’d love to hear how your child is similar or different from this. They don’t call it a ’spectrum’ for nothing, and there’s so much for all of us to learn. I didn’t even cover a bunch of stuff. If you have questions, feel free to ask!.

We had our first meeting with the school system today! Mary and I took the 25-minute drive down to where most all of the county and state child-oriented offices are.

Architectural aside: You can tell that the construction of this building and the passage of the legislation that mandates special ed services might have had something to do with each other. The 70s, brown, prison-crossed-with-bland-military-base-buildings motif of the place was as depressing as I remember it from his first evaluation there two years ago. An army of children could have shat all over the bathroom and you never would be able to tell.

Anyway, the meeting involved his Early Intervention Coordinator and a representative from the school system. As defensive as all parents who go through this are programmed to be from the word go, this went very well. We’ve been told by several people that if you’re going to live in North Carolina and have to get services through the county school system, where we live (Wake County / Raleigh) is the place to be.

No real red flags at this point and we have a pretty decent sense of what our schedule is going to look like between now and the start of the school year. Many parts of the outcome are unknown obviously (where he’ll be placed, what services he’ll qualify for, etc.). Given that the official meeting to determine everything (the IEP meeting) won’t be until less than a month before the school year starts, we’ll be hitting up on some serious time pressure there. Because his birthday and the start of the school year are within a few days of each other, this apparently makes it much easier for him to get a placement closer to our house. There will be much rejoicing if that happens!

The one major issue that gets my Hanes all in a wad is that when school isn’t in session, the special ed kids get no services through the school system unless they are in an extreme situation of regression. I was thinking, Yeah I know school won’t be happening, but surely he can still get some speech and occupational therapy through the county during those times. *Buzzer* Thanks for playing.

Harsh reality of county school services #1 - No school = you’re completely on your own until the next time the bell rings weeks or months from now.

News flash for school systems #1 - The typical degradation over the summer of a child’s knowledge of civics and calculating the time it takes trains to meet in Wisconsin is not as big of a deal in the grand scheme of things as the potential regression of speech in an autistic three-year-old. I’m way more interested in him talking than having that vacation to Disney. Just sayin’.

We do both kinds of school years here: Year-round and “traditional” (end of August to early June, give or take). I would think every special ed parent in the world would want year-round since the breaks between sessions are spaced out and shorter, which means less interruption between services. We can fill in 2-4 weeks off a few times a year with something. It’s the 2 1/2-month expanse of nothing in the traditional calendar that concerns me. Talk about a potential for regression!

Helpful answer to Reality #1 - The “Autism Underground” (pretty much what I’m calling the collective of parents around here who form the most elaborate support network I’ve ever seen) kicks in and offers everything you can think of to help you through those breaks in the action. We’d probably also try to get back in with his current therapy office during those breaks to keep the progress going.

Of course, we’ll also have the new home ‘classroom’ (still a vaporware DIY project). But since the recommendation is for 35 hours per week of total activity time (school + therapy services + work at home on therapy-related activities = 35), losing for any period of time what will make up the majority of that - school - will be rough. We’ll figure it out, but this has been a bit of sticker shock for us.

Confluence of unrelated events that may work to our benefit #1 - J-Man misses the kindergarten cut-off here by a whole day. This means he will be eligible for three years of preschool and not two, all because they couldn’t schedule Mary for induction in August three years ago. That could really work out well toward meeting our primary goal of getting to a place where he can be mainstreamed in a “regular classroom” and get near age-level developmentally by the time he starts kindergarten. Either way, much work lies ahead.

All that said, this part of the IEP process is like the preseason in NFL football. People go out and run a few plays and get acquainted with the game. It’ll be a couple of months until we put the pads on, but all signs so far lead us to feel optimistic that we won’t need to use them.

J-Man’s ‘inclusive preschool’ has taken its show down the road a couple of miles. We outgrew the little room we were in at the therapy office, which doubled as the community break room for the therapists. Not to mention, all the heat in the building apparently was directed into that little room. The combination of heat, body funk, markers, apple juice, and pee diapers proved to be a real motivator to complete the deal to move into a more spacious setting. God help them all if a kid ever dropped a diaper bomb in that old room…

So J’s preschool - a.k.a. The First Church of ‘Yes, We Can’ - has literally moved into a church. The room is huge, and they have a full-blown playground! The first day’s report was that Jonas - feeding issues and all - found the edible mulch at the playground reasonably palatable. Maybe if we shred some over pasta he’ll eat it.

With nine kids on the wait list for a class of just six, the new digs will let them split the class into two and add six more kids. They’re looking to group the kids in the class by developmental delays, so for instance the ’sensory kids’ will end up together.

The classes are team-taught, which is not only a good idea but an absolutely necessity! One of his teachers from before now has the other class and his developmental therapist has now joined in as the other half of his teaching team. J-Man looked a little confused about this for a while, with a temporary “Holy crap, what are you doing here?” look on his face.

He did his explore-the-room-off-by-myself-to-get-adjusted thing for quite a while, but he’s coped with the new environment much better than I thought he would. I think the size of the room really helps since he can go get some personal space if he needs it, something much harder to do in the old place.

They’ll add one new kid a week until each class gets to six so everyone - including the teachers - can get used to all the changes. It’s been great getting to know the other parents and kids, and I look forward to the new ones. They’re such a fun bunch!

So, a great first week! With the big autism evaluation Tuesday, we have no idea what this coming week will bring. More on that later…