Measurable Progress

Someday I will share the full story of how and why we pulled Moe from school. For now, it is enough to know that he was not progressing there. What started as a desire to secure additional extended school year services (for summer and other breaks) turned into a full independent evaluation done by a very well respected child psychologist on our dime. She observed Moe in class on two separate occasions, and it was her professional opinion that the school district's preschool program was not appropriate.

Moe has been doing an in-home ABA program since June. He receives about 20 hours a week of in-home behavior therapy as well as an hour a week of speech. In the beginning, the difference was remarkable. While the school tried to convince us that Moe wasn't meeting goals because of his "rate of learning," Moe mastered his programs at home quickly. The school and our ABA provider use the same program so the comparison was easy.

Jeff and I have been thinking a lot about where we want Moe to be next year. Should we continue with a home program? Get him back into school? And if school, which one? We know the district's program is simply not appropriate for Moe, and there are several non public schools in the area. Last year, I visited seven of them, and there are two or three that might be appropriate, though they all have serious trade-offs. We will need legal action to get Moe in one, and we need to be sure the one we choose is the right fit.

I've also been questioning a little whether his home program continues to be effective. Moe is bored at home sometimes. The program is highly scaffolded, meaning that program progresses in small, incremental steps. While his early progress was remarkable, it can be hard for me to see the progress when the steps are so close together. For example, to Moe one sorting task probably looks a lot like another, even though we've added more items or distractors to make the task more challenging.

In order to help us answer these questions, I took Moe to see the same psychologist who evaluated Moe last year. Dr B met us in the waiting room, looked at Moe, who waved to her. She said "such a difference from last year. I can see it already."

I was nervous as we went to her office. Moe can be aggressive and non-compliant and frustrates easily. I really wanted her to see him at his best. This assessment isn't about qualifying for services, it is about making the best decision for Moe. I wanted her to get an accurate picture of Moe's skills.

He did great. By that I mean, he did his best, with no behaviors to get in the way. He showed what he could do and where he still struggled. He sorted. He matched. He imitated and approximated words and blew bubbles. He had trouble with a few areas I know he knows (like pointing to body parts), but Dr B will be here Thursday to see him in a ABA session as well.

This was the first assessment I can remember leaving with a smile on my face. I did not fall apart in the car on the way home. Moe has made progress.

Moe is still severely delayed. He's probably at a 2 year old level or younger for many things. But he's doing better. He's learning. As we were packing up to leave, Dr B said to me  "It is nice to see him learning things and not just pushing toys around in shaving cream."

And in that moment, I knew that we made the right decision to pull Moe from school. I know his progress this year has been real and significant. I still don't know what we are going to do next year. But I do know we were not being unreasonable to demand better for him, that his lack of progress wasn't because of his learning, but because of how he was being taught.

What Moe Can Do: Imitate

Moe is a smart kid. He's a problem solver: if he sees something he wants, he will figure out how to get it. He does best at concrete tasks where expectations are clear. He can learn. We know this. But for the longest time, Moe was unable to do something most parents take for granted: imitate.

Imitation is one of the fundamental building blocks for learning. Typical children imitate their parents when they play. They imitate other kids to learn social interaction. They imitate speech sounds to learn to speak, and often will closely watch the way a speaker's mouth moves so they can move the same way.

For this reason, many ABA programs including our own spend a lot of time on developing imitation skills. And not long ago something "clicked" for Moe. He is now able to imitiate physical actions. In fact, his go to response right now if he's unsure of what you are asking him to do, is to imitate you.

We are excited about this development! It shows that skills, like imitation, that come to many children naturally can be taught. I have no doubt that Moe had to reach some level of brain development to get here as well, but this skill certainly has come only since we started working the one on one home program with him this summer. He imitates play with toys like dolls, farm animals and cars, as well as gross and fine motor movements.

Surprisingly, Moe's fine motor imitation is much more accurate than his gross motor. A request to put his arms up may not make it all the way over his head, for example. This is likely do to motor planning and proprioceptive difficulties (understanding where his body is in space). Moe is able to distinguish one arm versus two arm actions and sometimes will even discriminate left and right (though we aren't asking him to do this specifically).

This is still done in a highly directed environment. I do not think Moe always understands why or what he is imitating, but he knows he should do it and is motivated to do so. If imitation truly is the foundation for other learning, it gives me hope that he will learn more advanced and abstract skills as well, though certainly in his own time. In particular, basic imitation is a foundation for learning to speak, and indeed Moe is trying to imitate some speech, though his apraxia (difficulties with motor planning) does get in the way.

This is one of the reasons our ABA provider is so insistent on making sure Moe makes eye contact before we fulfill a request. It isn't that we want Moe to be able to look us in the eye for social purposes, but rather that we hope conditioning facial awareness will help him imitate the motor movements for speech.

I know a lot of this conditioning type of ABA can be controversial among autistics themselves. Even words like "conditioning" can make people bristle. Moe seems to do well with this repetitive type of learning, but it certainly may not be for everyone. Let me also be clear that this is not about trying to get Moe to act "normal" or otherwise hide his autism. It is about helping him gain the skills he needs to be able to learn.

I would be interested in hearing from autistic people themselves if they have thoughts on teaching imitation to teach learning other skills. Is imitation something you work on? Or do you learn in a completely different way?

This is the second in the series about the new skills Moe has gained. Click for the first piece, Play iPad.

Trial and Error

We are now about three and a half years since Moe's autism diagnosis. One thing I've learned, and that I'd share with any parents of a newly diagnosed child, is that there is a lot of trial and error. Although there are professionals who can guide you, there is no way to know exactly what therapies or interventions (or lack thereof) are going to help your child progress. It is one of the aspects of parenting Moe that I find most frustrating. I just want someone to tell me "do this!" and Moe will reach his potential.

We initially had Moe in a center-based program, then realized he needed something different and moved to an in-home program. I regretted those few months we "wasted" at the school. When Moe turned three, we moved him to the preschool special day class. After two years, we decided not to send him back. I regretted not doing it sooner.

But there really isn't anyway to know before you try. Some things work for some kids and not others. Some therapies, like ABA, vary widely in approach, with some kids responding best to concrete discreet trial applications and others doing better with more naturalistic styles. It may take a while to find a therapist or provider who fits your family's style and needs.

Sometimes programs, or therapies or medications may work for a while then need to be adjusted. All people grow and change and our kids are no different. What worked at one time may no longer be appropriate. It takes time to get to know your child, and he will continue to change. I have to remind myself that trial and error time is not time wasted; it is the necessary process to figuring out what works.

We've tried a lot of therapies with Moe. Especially when he was younger, he really loved singing, so we tried music therapy. It was okay, but for us, it wasn't The Thing. We will keep trying. There are more things: aquatic therapy, equine therapy, recreation therapy, listening therapy. We will try some of them (especially ones that sound fun for Moe) and pass on others. I may regret time wasted and money spent on some, and wonder about others we decide not to do. But each thing we try is a lesson learned.

Moe did so well in an intensive, one on one, in-home program this summer. This ABA team uses very discreet learning, with the use of traditional reinforcers like food or iPad time. Moe seems to work well with this  concrete style of teaching and I thought, "why didn't we do this sooner?" I had to remind myself that when Moe was two he had an in-home program and he needed more naturalistic reinforcers at that time. Moe changed, and we adapted his program. It will likely happy again and again.

At the beginning of this school year, we put Moe in a school that uses more of a group-based approach and it didn't work. We understand this now, and as we look for a new school placement I have a better idea of where he is likely to succeed. Do I regret the month he spent at the school? A little. But we had to go through the experience to figure it out.

Fortunately, we are getting to know Moe's style of learning better and getting faster at recognizing when he isn't succeeding. And he is getting better at telling us when he's unhappy - even if it is through behavior rather than words.

As we prepare to start working with an AAC specialist, I am hopeful that we will find the right communication system or device that will help him communicate. Part of me is already kicking myself for not starting sooner, but we had to wait until he was ready. Moe seems to be ready now, and I am looking forward to seeing what he can do. I have high hopes that we will find the right thing quickly, but I am sure there will plenty of trial and error here as well.

Explanatory Fictions, Behavior, and Sensory Processing

Many people with autism are also diagnosed with Sensory Process Disorder (SPD). Much like autism itself, diagnosis is not always clear-cut. We all, to some degree, have some sensory sensitivities or proclivities. But true SPD is more than that. We know from people who are capable of describing such things, that some people do process sensory "input," like lights, sounds, and touch, as well as movement and awareness of body in space, differently than people without SPD.

I don't know if Moe has SPD. I'm sure if you asked our Occupational Therapist, she would say unequivocally yes. If you ask our ABA Director, he might deny such a thing exists. And herein lies the challenge.

Moe is a sensory seeker. He loves to play with water and have his back rubbed and feet squeezed. He is calmed by swinging and gets riled up by spinning. He will occasionally do things like pull the grass and watch it fall very closely to his eyes. Everything goes in his mouth. He likes stronger flavors than most kids his age (spicy or sour) and seems to have a fairly high pain tolerance. As I write this, he is screaming, not out of any or frustration, but because it is a new "stim," or so it seems from the outside.

But how do we know he has a processing disorder? We do know he has severe language impairments. Without language to process the world, what is left but the senses? Moe can touch and taste and explore with his body. It is what he understands. He cannot connect to others with conversation, but when someone rubs his feet, that feels good and he likes to keep that going. That seems perfectly reasonable to me, not like a disorder at all, in fact.

Moe does have some sensory sensitivities, especially to the dog barking and to the sound of his little sister crying. His sensitivities are not extreme in that he can recover from them fairly quickly when the noise stops, but he is clearly bothered by those sounds quite a bit. I am too. Those two in particular make it very hard for me to concentrate. If the dog is barking, I find I absolutely cannot continue a conversation I'm having. I don't go running from the room, but I am also older and able to regulate my reactions better. Now I don't know if Moe and I fundamentally process sounds differently, but it is hard to diagnose a disorder based on hating two of the most annoying sounds known to man.

I mentioned the word "regulation." This is something Moe has quite a bit of trouble with. He can get very excited very quickly, and sensory input is often helpful in calming him down. A lot of what we do in OT is related to these regulation and calming strategies. Moe can also be quite impulsive. But again, without language or the sense that there socially acceptable ways to behave and not behave, and no way to ask for things beyond the few gestures and sounds he has, the line between sensory processing and behavior becomes blurred.

And this brings me to something I've come to learn about Moe, and about why so many of the techniques we've tried in the past with him may not have been successful. It is very easy to attribute Moe's behaviors, like grabbing, pulling, and biting, to "sensory needs." In his classroom, they would give him things like weighted vests, fidget toys, and chewies when he was acting out, especially during activities like circle time. And sometimes those things helped and sometimes they didn't. And when Moe used a "replacement behavior" like chewing on a pillow instead of a person, they claimed success and moved on. But they weren't addressing the fundamental issue.

How do I know that? Because it didn't stop the behaviors. In fact, it may have increased them. Imagine if you were trying to tell someone that you didn't like circle time, or didn't understand what was expected of you, and they stuck a heavy blanket on you. You might, for a moment, think, "this blanket is really comfortable." But then you'd realize that you are still in circle time and you still don't understand what you are supposed to be doing. And then you would be even more frustrated.

Sometimes, it seems Moe is unable to control his actions. He lashes out or spins wildly in his hammock swing or screeches, and I think he can't help himself. But by working this summer with some talented behaviorists, I've learned that he can. For example, Moe will often get aggressive when getting ready for bed. I could believe that when he is over-tired, he cannot regulate his system, and the deep pressure input he gets when he grabs me is his way to try to calm down. Or I could believe that he doesn't want to go to bed, and is acting out because that is his only way to communicate a pretty complex need. Or maybe the truth is somewhere in the middle. He's overtired, feeling cranky, and is hitting because he wants me to know that he doesn't like how he's feeling.

What I do know is that with the right motivation, Moe is able to control his response. If, for example, I let him have his iPod while I'm changing his diaper, he is calm. It is not just that the iPod gives him a place to focus. He will be acting out, and I can say "do you want phone? Show me nice hands." He will immediately calm. I can then say "please lay down." He will lay down immediately. I hand him the phone and we get through the diaper change quickly and easily.

I am not denying that Moe has trouble regulating his emotional response. I don't deny that he is a sensory seeker or that sometimes he gets so frustrated or overstimulated that a sensory approach is the right way to help him calm down. But we, as well as many who have worked with Moe in the past, have probably downplayed or misunderstood the behavioral component to his actions. We used what our ABA director called "explanatory fictions," applying a sensory approach to a behavioral situation, and as Moe gets older and his needs are becoming more complex, as he is asked to do more and has more reason to try to get out of completing taks, we are figuring out better ways to both motivate appropriate behaviors and attempt to extinguish inappropriate (aggressive) ones.

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And Back Again

When Moe was two, he had 25 hours a week of in-home early intervention. At the end of that difficult year, I said I would never do that again.

This summer, we had Moe in a 30 hour a week in-home ABA program. I agreed because it seemed like a way to jump start his learning after two years of being enrolled in a preschool program with very little progress. And it was only ten weeks. At the end, I said I would never do that again.

And now, just three weeks later, I am doing it again.

It has been a hard three weeks that has affected all of us. Moe had a rough transition back to school. Behaviors that I had hoped would taper off after returning to a regular schedule escalated. We drove 50 miles a day to school and back, and each day on pickup, the report was the same: "Moe had a rough day." We added a dedicated aide. We adjusted Moe's daily schedule. We hoped it was just a transition period.

And this weekend, we made a decision. We took Moe out of school.

Of course, we consulted with a few people first. Jeff and I observed the class. And we could see that despite some really positive aspects, it was not going to suit his needs. They weren't set up for him. He was unhappy, in Moe's perfect storm of both bored and over-stimulated. And Jeff and I, through our research on schools last year, through the ups and downs and assessments and evaluations and so very many therapies (and therapists) have gotten good at knowing what is working for Moe and what isn't. Moe may simply not be ready for a classroom environment.

Moe had a good summer with his in-home ABA program. So for now, we are going to continue with this. As the end of summer approached, we considered whether we wanted to continue on or send Moe back to school. We thought the program would be a good complement to an afternoon ABA program. And even though Moe wasn't able to weigh in on the decision beforehand, his behavior told us he wasn't happy there. And we decided to listen to him.

I am nervous. It means I am, for the third time, going to be with Moe almost all of the time. He can be challenging, and I get the brunt of his frustration and aggression. Part of me thinks that if he is not ready for a classroom environment, isn't that exactly where he needs to be? How else will he get ready? But he really learns better at home in that one on one environment. He does great with repetition, and discreet trial type learning (though I know this isn't for everyone). And Jelly is the perfect typical peer for him, willing and eager to participate.

This time, it is different. There is no end time, no number of weeks or birthday that will mean back to school. But that also means no deadline. We will do this as long as it is working for Moe and go back to the drawing board researching schools for when he's ready.

This is the Right Thing, even if it is also the Hard Thing. But once again, I am left wondering if there will ever be a place in this world for Moe.


 

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Uneasy

I dropped Moe off at school for the last day of his second week. My heart sinks when I leave him, and although I'm glad for the break, something hasn't felt quite right. It has been a difficult transition for him. Reports from his teachers at the end of every day have been consistently negative. "He had a rough day." "He seems off." Though of course it is a new placement, so they haven't really seen him on a good day. It hasn't helped that Moe has had a cold. New school, new germs.

Frankly, I haven't seen Moe on a good day in several weeks.

Moe has been aggressive lately, with increasing frequency and intensity. He scratches, bites and screams. His outbursts are brief and seem to come out of nowhere. Sometimes they are clearly frustration induced, so we need to get him a way to communicate with us. He is still so heavily prompt depended for communicating his needs. We have started the process for an intensive AAC evaluation at his new school.

Moe's behaviors have necessitated the need for a one on one aide for him at school. I was hopeful that this would help keep some consistency between his home and school programs, and help mitigate the aggressive behaviors. Yesterday was her first day with Moe. He bit her. She made sure to tell me that she had to get a tetanus shot and is on antibiotics. Of course I feel terrible. But isn't that why she's there in the first place?


I had hoped that being back in school and on a regular schedule would help. And Moe has been sleeping better, at least. But he is still lashing out at home. We are on edge whenever he is around. Jelly is afraid of him, flinching or moving away whenever he comes close. It breaks my heart, but I know it is partially my fault. I tell her "give Moe some space." I am afraid to take him anywhere. I wonder if medication would help, but I don't think we're there yet. I think Moe has learned that these behaviors get him something, and we need to figure out how to turn that around.

I feel at a loss over how to parent my boy. I am in over my head and am running out of places to turn. I am constantly on the edge of tears, and that is not helpful for anyone. Our ABA team is helpful and I want them to move in with us, but I don't think insurance would pay for that. So instead I am working on finding someone who has specific experience with aggression in non-verbal kids. That may or may not be someone from our current ABA provider. I really want Moe to be a success story, but right now I feel like we're failing him.

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An Unnatural Position

Moe has a great laugh. Sometimes I hear this laugh, a sweet giggle that is pure joy, when he's watching TV or we're in the car. Occasionally, during a rare moment when I can get Moe to play, he'll let out a genuine, adorable belly laugh.

But Moe also has another laugh. To the untrained ear, this laugh sounds a lot like the first laugh. But trust me, it is different. This is the manic laugh, the one that escalates, the one that starts and does not stop. This laugh is not in response to a game or a joke, but comes from inside, from a place I do not understand. This laugh is a warning.

It is a warning that Moe is overstimulated. It is a warning that he is not able to control his impulses. It is a warning that he won't be sleeping any time soon, that I need to be on high alert because he is going to grab the dog or pull Jelly's hair. And he better not need a diaper change because it might be nearly impossible to accomplish.

Sometimes Moe wakes up laughing like this, and I know it is going to be a rough day. As parents, we innately want to hear our kids' laughter. In those earliest sleep deprived days, we are propelled forward by our baby's first smile. And just when we wonder how we will make it through another spit-up covered day, we hear our child's first laugh, and are energized once again.

But if ABA has taught me anything, it is that we humans are, as all animals, creatures of behavior and conditioning. And though the power of motherhood is strong, we cannot deny our Pavlovian dispositions. And my life, turned upside down in a myriad of ways, is one in which my son's laughter fills me with dread. I hear Moe laugh and my heart sinks.

It is an unnatural position, an uncomfortable contortion of emotion.

I suppose I am lucky. Moe doesn't have tantrums. He survives trips to Target and is able to eat at a restaurant largely without incident. He rarely cries. If, on a trip to the grocery store, Moe begins to giggle wildly, the stares will largely be of the "aww, isn't he cute" kind, rather than the "I wish she'd control her kid" kind. Not that it matters what anyone else thinks, but I'll take what I can get.

I cannot tell if Moe is happy when he's giggling wildly. I suspect not, that he doesn't enjoy that his mind and body are out of control, or at least I suspect they are. Sometimes he calms down by finding a quiet space, in a closet or reading a book in his room. Though sometimes he seems to try to make the feeling continue, spinning wildly or running back and forth. I imagine it is like a drug, that high feeling, one he wants to continue. And all I can do is try to help him come down gently, and not get hurt in the process.

A mother, trying to stop her son from laughing.

Summer Update

This was a good week. I feel like I am breathing again for the first time since summer began.

We have demanded a lot from Moe this summer in his home-based ABA program. For the first time, he is in a truly individualized program, one that meets the definition of "intensive." He's doing well, but also telling us his limits. He's learning not just skills that he should have been learning in school, but learning compliance as well.  They are spending time cleaning up "junky behavior" (like grabbing everything) and keeping him focused. Moe needs to know that when he has work to do, he has to do it - or let us know that he needs a break. He always has an out, but that escape cannot be with bad or aggressive behavior.

Moe is doing great. He has a fantastic team who believes in him. Last week one commented that they can't believe Moe's rate of learning. This is especially interesting since the school district has tried to make the case that Moe's lack of progress is due to his slower rate of learning. It just shows how important it is to find the right program and the right teachers.

Unfortunately, with the change in routine, Moe's sleep demons have returned. This seems to happen with each major change in routine as, I believe, Moe processes the changes. The combination of his difficulty falling asleep, accompanied by night wakings, takes its toll on the entire family. We are trying to find the right combination of dose and timing of melatonin and behavioral approaches to helping him fall asleep and stay asleep.

Moe spent some time testing us with escape behaviors and aggression, but I'm learning some techniques to deal with it, and Moe is learning quickly that he gets what he wants by being calm and asking nicely (which in his case is any communicative attempt with eye contact), and not by acting out. This last week was good, though, and although the weekend ended with a bit of hyper, manic behavior (he is still Moe after all), he seems to be finding some regulation again.

We are only three weeks from the new school year, which brings with it big changes for us. Moe will be going to a new school, and I suspect there will be a bit of a transition once again. The school is a good 30 miles away, so we will be commuting as well, and I am more than a little anxious about how we are all going to handle it. I've had long commutes before, and they are taxing. But this was the only program we found that seemed appropriate for Moe, so we do what needs to be done.

Looming over us, of course, is the fight we are in with the school district, a fight that has been placed temporarily on hold as the teachers and administrators are now on their summer break. This has given us some time to regroup and focus on what is important, which is of course, what is best for Moe.

Moe Finds His Voice

Moe has a really cute voice. Soft and breathy, it is the sound of the sweet boy that he is. But for a long time, I rarely heard that voice. Moe communicated in whines and cries. He'd shriek and make repetitive sounds for no one's benefit but his own. He sometimes sang, but even that had become less frequent over the past year.

That harsher voice sounded like the Moe we had been living with: aggressive, moody, out of control. I forgot the other voice--the other boy--existed.

And then, a little over a week ago, I was eating chips and he really wanted one. Moe had been getting better with physical imitation and signing, so we had been working with him on signing "I want" then pointing to a desired item, rather than just whining and grabbing. But for some reason, I thought back to my Pivotal Response Treatment (PRT) training. I held the chip up and said "chip?" Moe pointed. He grabbed and signed every sign he knew. I held his hands down and said "chip?"

And then Moe said "p."

It was just a "p" sound, but it was clearly an attempt at vocalizing his need. They were really good lime tortilla chips and we did this over and over and over. Again and again, Moe tried to say "chip."

After that, something happened. Moe is now requesting things with his voice very consistently. He still signs sometimes, and his behaviorists always want him to give eye contact even if he speaks, but he will almost always go to his voice first. He consistently says "up," "apple" and "phone." We've also gotten "open," "all done," and "more." Sometimes we get the beginning of a word and sometimes the end, and everything else gets some variation on "ba," the sound he makes most easily.

The words are all about Moe's needs and I can't exactly say Moe is talking. These are all approximations. But he is trying. He spontaneously comes to me and taps me to get my attention, and then makes a sound. I understand when Moe wants something and isn't just unhappy. Moe understands when we are trying to get him to say something. He often can't form the word or sound, but he knows what he is supposed to do.


It is a small step but it feels like a barrier has been broken.

Summer Moves Along

We are at the end of week two of our ten week summer break. That's one fifth--twenty percent--done. Not that I'm counting. (Side note: anyone know how to get an em dash in Blogger?)

We decided not to send Moe to the extended school year program at his school. I still don't feel comfortable writing publicly about the process we're in, but I will say that we have wrapped up over six hours of IEP meetings and have not yet signed the IEP. Moe hasn't made the progress we believe he is capable of, and so this summer we want to do a more intensive program with him, including 1:1 ABA, speech and OT.

I am both nervous and excited about this. It means many more hours at home. I am having flashbacks to the lonely, scary first year after Moe's diagnosis. But it is what he needs right now, and we are going to make it happen.


ABA hasn't started yet, so I've had a lot of time with Moe. He is doing okay. He is still showing many aggressive behaviors, his sleep is off, and he is having a lot of sensory regulation issues. But this week was better than last, in part because Jelly is back in preschool three days a week. I've realized how much easier it is with Moe when it just the two of us. I can actually take him out of the house. We can play in the backyard. He gets the attention he needs.


Moe and I went grocery store. I dragged him along to a number of errands, which included many times in and out of the car. We can use the iPad without Jelly climbing on me to see. I realized how much attention Jelly requires, and that neither of them are getting enough from me. I am not saying this to be tough on myself, but it is true. If they had each other to play with, things might be different, at least at home.


But it isn't just attention Moe needs. He needs behavioral instruction that I don't know how to provide. Being out and about isn't always as easy as it was the other day. Yesterday we went to pick up Jelly at school and she was on the playground. Moe, of course, wanted to run away, but I couldn't let him. Jelly was on a bike and didn't want to get off. And all I could do was restrain Moe and plead with Jelly. Nothing terrible happened, but these moments are exhausting, no one is happy, and it is time to get some help. Behavioral support for Moe is on the way and I'm looking into getting some babysitting help for Jelly.

Letter to Myself (August, 2009)

Dear Jennie,

A blizzard is coming. It is a storm of epic proportions, one that was not predicted nor one you could prepare for. The blizzard will knock out your power, blind you, keep you snowed in for months. Don’t get me wrong, you’re still in California. The sun may even be shining.

You will be hit by the storms that follow an autism diagnosis, the blizzard of early intervention. You will be trapped inside your house. Therapists will come and go, three times a day and you will not be allowed to leave. They will leave your house, your schedule, your emotions, in chaos. You will watch them interact with your child, but you will not participate – not much anyway. You will be sick with cabin fever for months.

You will also have a newborn to care for.

This will be one of the most trying times of your life, but you will survive. You will write and you will share survival tips with others who are also snowed in, living off cans of soup and the last crumbs of their emotional reserves.

In time, the sidewalks will get shoveled and the streets will get plowed. Your autism storm will not end, but snow and ice will gradually turn to rain. When your son starts school, the sun will peek through the clouds and it will be safe to go outside. There won’t be any rainbows, and memories of the blizzard will continue to chill you the bone. But you will live through it.

You will survive.


Written for this week's Red Dress Club prompt: to imagine you are trapped alone or with others at a single place during a ginormous blizzard or its aftermath.

Too Much Information

And I'm not talking about the good kind of TMI where you get to hear some juicy secret of mine. You see, I've been home a lot lately. I mean a lot. We've all been sick and that means I've had a lot of time to surf the internet. I've also been writing a little for Technorati, so I've been researching autism and paying attention to autism news a lot more, and there's just so much of it.

Just this week, I've learned that autism may be caused by: mitochondrial dysfunction, living too close to freeways, and living near a cement plant. In the past, I've also read that autism is caused by: heredity, other genetic mutations, vaccines, bad parenting, heavy metals in the bloodstream, premature birth, and allergies. The list goes on. (Read this great summary of the flaws in some of the recent research.)

Within autism, there are so many diagnoses and co-morbid conditions: high functioning to severe, Asperger's, apraxia, sensory processing disorder, hypotonia, hyperlexia, and echolalia to name a few.

And then there are the plethora of therapies out there, including but not limited to: ABA, Floortime, SonRise, Pivotal Response Training, Relationship Development Intervention, occupational therapy, speech and language therapy, sensory integration therapy, music therapy, recreation therapy, riding horses, surfing, gluten free casein free diets, chelation, B12 shots, other vitamin and mineral supplements, essential fatty acids, fish oil supplements, gut treatments including probiotics and antifungals, and hyperbaric oxygen therapy.

It is enough to make a person crazy.

Our approach has always been:

• Let the science guide us.
• Go to trusted professionals for guidance.
• Do no harm.
• Do what works for our family.

And because of that, we've gone what might be considered a fairly conservative route for Moe's autism therapies. We started with individual ABA, speech therapy and occupational therapy, and gradually added a group component. Now Moe is in our school's program (which is excellent), a small class based on the Competent Learner Model, but taking cues from traditional ABA and developmentally-based techniques. He gets group OT and both group and individual speech at school.

We recently added some music therapy, which is also a lot like ABA but using music (instruments, musically based games, singing, etc.). This is not "traditional" but because Moe is so musically inclined, we thought at the very least it could be fun for him. Our music therapist also teaches older spectrum kids to play instruments so my hope is we are building a basis for that in the future as well.

We've recently decided to add in some more OT. It's not going to be strictly sensory integration therapy but we will focus a lot on Moe's sensory-seeking needs. He has a lot of them (chewing, spinning, swinging, etc.). We've had to delay starting because of all our illnesses but I hope we can give Moe some of that extra input he needs to help keep himself more regulated and focused throughout the day.

I am not advocating this approach for everyone, but it is what we can handle. I do think it makes a lot of sense to start small and add in as you go, both in terms of keeping some sanity and for tracking progress. But every day I question whether we're doing the right things, too much or too little. Jeff seems more confident in our approach, and that's good, because I'm sure I'd be all over the map if these decisions were mine alone.

Autism may be a puzzle, but its really the maze of options for parents that is so confounding.

Maybe the soup isn’t cold enough

My dad likes to tell this story. He’s a dad, so he tells it a lot. My uncle, his identical twin, has also told me this story. Genes are powerful things.

The story is about a boy. He seems like any other boy, except he doesn’t talk. He’s two years old, then three. But he’s happy and lovable, so his parents don’t worry about it too much. By the time he was five years old, he still hadn’t said a word. Not one. Then one day at dinner, he looks up to his mom and says “The soup is cold.”

His parents are beside themselves. They can’t believe it! Their boy can talk! And so clearly! When they finally recover from the shock, they ask their son why he hasn’t said anything before. He replies “Up until now, everything was fine.”

I often question whether or not I’m making the soup cold enough for Moe. In other words, do I make things too easy for him so that he doesn’t have to communicate? About half way through his ABA program last year, we started pushing him pretty hard. The idea was to increase his frustration level so that he would need to communicate with us. This seemed to work for a while, but then he shut down. He isn’t motivated by too many toys, so we used food as a motivator. But meals became incredibly frustrating and tear- and tantrum-inducing. So we backed off, and then that seemed to work. He would tell me “more” or “all done” with signs or sometimes words. But once again, we seem to be back to more tears and less communication. I think it may be time to start requiring more from him again.

This kind of up and down and constant experimentation always makes me question if we’re doing the right things with Moe. We know that we need to keep working hard. The research shows that early intervention does make a difference. But in the back of my head I’m always wondering how much it matters – if he’s just developing on his own terms and will talk when he has something to say. When he does, I hope it’s not to complain about my cooking.

May is the Month for Meetings

As I expected it would be, this month has been filled with meetings. We have just one more big meeting (hopefully) coming up on the 20th, and the others have really been preparation for that.

This week, we had Moe's annual Individualized Family Service Plan (IFSP), which also served as his official exist from Early Start services. This is the meeting where we discussed the results of his latest assessments, reviewed our team's recommendations for ongoing services and discussed the transition to the school district. He will continue to receive services through his birthday, but the day after memorial day, he's cut off from his current set of services. I'm jumping for joy and trembling with fear at the same time.

As I've discussed before, it is tough to quantify a kid's level of ability based on standardized tests, especially when you're dealing with an autistic kid who may or may not feel like performing for you on any given day. So I'm trying hard to take the results with a grain of salt. That said, our team, especially our SLP and OT who see Moe every week, know him well. Their written reports are pretty accurate views of where he is now, and have given the school district (in addition to their own assessments) a good picture of where he is. In a future post, I'll try to paint that picture here.

On May 20, we have our Individualized Education Plan (IEP), which will spell out the services provided to us by the school district. That document, and the goals within it, is our contract with the school and is critical to how we move forward with Moe. All parties, including us, have to agree on what is in it, and it isn't binding until signed. Unfortunately, this can become quite a contentious process, often involving advocates and/or lawyers. So far, however, our school district has been very responsive and thorough in their evaluations. The psychologist has spent five hours with Moe, including one parent interview, two assessments and two ABA observations. Although she hasn't given me any details of their proposed plan, she indicated to me this week that her assessment of Moe is very much in line with what she read in the IFSP, as well as Dr S's latest report.

Incidentally, Moe also qualified for ongoing regional center services. They no longer provide the ABA or speech services, but do offer some assistance with things like respite care, day care, diapers after the age of 5 (Lord help me if Moe is still in diapers at 5), and behavioral consultation for specific problems that may come up over time. I hope we never have to use them.

Budget Cuts

One of our concerns when we first started early intervention (EI) was whether we could get appropriate services for Moe, given the California budget crisis. By law, California must provide appropriate services for all qualified children, but of course "appropriate" and "qualified" are squishy terms. We've been fortunate enough and pushy enough to get the right services for Moe.

At the end of January, I attended a parents' meeting with our ABA provider about budget cuts that are coming their way. I learned a number of interesting things at this meeting.

First, parents are having more and more success with insurance. It is always a fight, and often takes many months of appeals and reviews, but parents have been able to get insurance coverage for autism treatments, including ABA, speech and OT. The providers love when they do get insurance clients; they get better rates, fewer hourly caps, and can provide more services, especially with kids over 3. This is because health care providers are concerned with "quality of life" where school districts (who manage services after age 3) are only responsible for addressing issues that affect educational success. Our provider believes (or maybe hopes) that insurance is the future of autism coverage.

Second, I learned that many more parents than I realized are paying out of pocket for their kids' therapies, either entirely or to supplement what they are getting from the school districts. Many of the parents at the meeting were from an excellent nearby school district (not ours), but one that I'm told doesn't have great special ed services. I've heard good things about our school district, which doesn't contract with the center but provides their own programs. But until we see the specific program that we are offered, it is hard to tell. We're going to start looking at some of the other agencies around just in case.

Third, I learned that the Regional Centers and the School Districts are being much tougher with their definitions of "qualify" and "appropriate." Where 80% of our provider's clients used to be big (25+ hours/week) programs, 80% now get fewer than 10 hours. Their center-based program is filling up since the RCs are more likely to recommend a cheaper center than an intensive home program. This is what happened to us. Fortunately, we got second opinions and very strong hints from the center director that Moe needed more. We pushed to revise our IFSP, and we got more. But not everyone knows enough to push for that.

Of course, providing fewer services during early intervention is only going to cost the state more in the future. Kids who don't get services early on are more likely to need more help later, continued services into high school and adulthood, including job training, self-help skills training, home assistance, etc. With the rates of autism rising, this is a potentially big financial burden building for the state and the nation as a whole. But the state is not run like a business, with a long term fiduciary duty to its stakeholders. The state lives budget year to budget year, and our kids are the ones who are going to suffer. There may be a number of problems with insurance companies covering autism care, but they are savvy businesses, and likely to take a longer term view of the problem.

So far, state budget cuts have only affected my family a little bit. At Moe's latest IFSP, we had to get a denial of coverage letter for speech and OT services before the RC would pay for them. Our ABA provider has had to reorganize to brace for the cuts but our program was only affected a little bit. But as we prepare for our first IEP and transition into the school district in May, I have a feeling we're going to start feeling the crunch a lot more.

Monthly highlights

Once a month, we have a clinic with Moe's team. His entire team of therapists come over and we talk about what progress we've made this month and what new programs we're going to implement next month. A program is simply a new type activity or skill that we want to track. We remove ones Moe has "mastered" and add in the next set of things we want to focus on.

We start every clinic with our favorite stories or highlights from the month. I felt like we didn't make quite as much progress this month as in previous months. This month had two holiday weeks, so we didn't have nearly as much therapy time as usual. And, as I've written about before, the lack of structure during the holidays seemed to through Moe off a bit. But clinic is a good time to remind ourselves the progress we have made and regroup for the upcoming month.

Some of the highlights from this month included:

• Moe has really taken an interest in art projects. He loves to color at his easel, but also at the new table in his room. He played with finger paints for the first time (something he refused to do before), as well as stamps.
• After reading a book to Moe during speech therapy, he took the book and read it back, repeating some of the things we talked about in the book: "Bear is skating," "Bear painting," "Snowbear," etc.
• Moe has been taking a greater interest in Jelly Belly, imitating some of her sounds and actions, like blowing raspberries during the "Mouth Song."
• We've been working on word endings, and he's been getting much better at pronunciation. He'll often be "lazy" about how he says a word, but if we say it back, he'll imitate it. Jeff and I have heard him practicing his words on his own as well, like "horse," "fish," and "goat" with a real emphasis on the word endings.
• I've also been working more on signing with Moe. Because he seems to be picking up speech, we haven't been focusing on signing too much. But since I've been signing with Jelly Belly and we've been watching Baby Signing Time videos, Moe seems to be picking up some. The other day, I gave Moe some scrambled eggs to eat and told him they might be hot. He tried one, and then signed "hot." Our SLP loved this because it showed great receptive language.
• Moe is imitating a lot more speech, and not just single words. He says a lot of phrases as well.

Progress has been good. But we still have a long way to go. Things we're going to focus on this month are:

• Receptive language: making sure language has a communicative function and that he is processing and understanding the language that he is hearing
• Parallel play and "play with me" activities
• "Show me" tasks, to teach joint interest
• Responding to his name

This week we also had our first transition meeting with the school district. When Moe turns 3, his services will be provided by the school district rather than through Early Start. We now have a timeline for his next set of assessments and a date for Moe's first IEP meeting. Although we won't know until then what specific services they school district will provide, we do know what school he'll be attending and we have a general sense of the types of programs available. More on this to come.

Six month progress report

At the end of the month, it will be 6 months since we started early intervention with Moe. This half-year has been a whirlwind of emotion, questions, worry, stress, loneliness and fear. But it has also been a period of learning and growth for all of us.

Moe has come a long way since we started. At Moe's early start assessment in May, he was basically non-verbal. Now Moe has said more words than I can keep track of. He labels items, and is getting especially good at animal sounds and filling in gaps in songs and books. He still doesn't initiate a lot of language, and although Moe can be quite talkative when he's in the mood, talking is still definitely on his own terms.

We've also noticed that some of Moe's other behaviors have changed or gone away. Moe used to spend a lot of time standing on his head. He loved to stand bent over with his head on the ground in a downward-facing-dog-type yoga pose. Or he would loop his feet through the slats of his crib so he could be upside down. Jeff and I have both noticed that Moe almost never does either of these anymore. Maybe the OT is working, or perhaps his nervous system is just maturing. I'm not even sure if this was a symptom of autism, but it is a change nonetheless.

Moe is also eating better, taking bites out of larger pieces instead of requiring us to cut up his food into small pieces, or tearing it up himself. He'll use a spoon independently. He still isn't drinking from an open cup, or taking his shoes off, two of our IFSP goals. But he will help with shoes by opening and closing the velcro, so that's a start. He's starting to use his index finger to point at objects in books. Pointing is something we've been working on in OT. He doesn't point to show us things yet. He isn't doing much pretend play either, but he is doing great imitation in play, which is a start. I've even seen him taking something we've done in one session, like making a fireman go up a ladder, and do it again on his own.

Moe is also much more engaged. He makes eye contact on a regular basis, and just seems more present. I think he'd still rather play on his own given the chance, and will tune out a lot, especially when he's tired. But don't we all to some degree? We put a lot of demands on this little boy. Unfortunately, things are only going to get harder for a while as we push him to use his skills more consistently.

As for me, I'm coming to terms with how things are going to be, at least for the next 6 months while we're still in early intervention (after that, we start to work with the schools). I've found some good online support groups, and plan to attend a local parent group next month. I need to learn from others who have been there. I'm currently reading Overcoming Autism, by Lynn Koegel, one of the founders of Pivotal Response Training. I am feeling optimistic about Moe's speech, but know that there will be a long road ahead trying to teach the social skills he's going to need in the future. That seems much more difficult to learn, and much more important.

Overall, progress is there, but it is slow. Moe has to develop one step at a time and it can be painfully slow. I hoped that once he started talking, language would just explode. I hoped that once he learned that he can ask for things, he would start to get the concept of social communication, and he would just blosson. As a mom, I can't help but harbor hope that somehow, something will click, and this will all be behind us. That is unlikely and the best advice I've received so far is to make sure not to burn out in the first year. We still have a lifetime ahead of us.

ABA Has Begun

Week two of the intensive home ABA program has begun. I'd say it is going well so far, though it has disrupted all of our routines. Jelly Belly is, at least for now, just as happy at home as she is when we're out, and Jeff is able to come home for lunch one day a week so I can continue to take her to our music class. Berkeley is, for the most part, being fairly well behaved (outside of the barking every time anyone comes and goes). She has been getting lots of treats and new things to chew on, while I try to keep her out of the way. I have been filling my days with the things required to run a house: laundry, dishes, and shopping - I mean, research on the internet. I'm reading, finishing up a needlepoint I started before Moe was born, and setting up my sewing station. I haven't yet sewn anything, but the sewing area looks pretty inviting.

In many ways, things aren't that different for Moe than they would be for any other two year old. He gets up and has breakfast, plays for a couple of hours, has a snack, plays some more, eats lunch, takes a nap, has a snack and plays some more. Then it's dinner, bathtime and off to bed. Having people in and out of the house all day is strange and a little uncomfortable for me, but right now Moe just gets a new playmate every few hours.

The first couple of weeks of therapy are considered "pairing." The therapists get to know Moe and he gets to know them. They are working with him, but haven't been pushing too hard. This week, he is also being formally evaluated on a number of skills which should set a baseline for tracking progress. Friday, we have our first "clinic," a meeting of the entire team, including us, the program director and supervisor, and all of the therapists. I think this is where we start to design the formal programs that we will all be working on with Moe.

So far, I like that the program feels like play. The therapists use a developmentally based approach, which can be worked into our everyday lives. I'm learning good techniques from the therapists and I think the program will be good for Moe. I'm a little concerned that he doesn't have any interaction with other kids most days, but as the program progresses, we can add in social and playgroups that are also run out of the center that manages the ABA.

I've also started reading a great book called Overcoming Autism, co-authored by Lynn Kern Koegel, one of the founders of Pivotal Response Training. Dr. S had recommended PRT for Moe, and this program, though not strictly PRT, uses a similar approach techniques, from what I understand. We all have a lot to learn, but I'm feeling good that we are headed down what feels like the right road.

Anxious

In the English language, words often have multiple meanings. Take the word "anxious." There's anxious, like "anxiety." As in, "I'm anxious about my upcoming surgery." Then there's the anxiety that connotes a restless excitement, as in "I'm anxiously awaiting my upcoming trip to the Bahamas." (Or in my case, this week's episode of Mad Men.) This duality of meaning has never made much sense to me before. But right now, I get it.

We start Moe's in-home therapy session next week. His daily schedule looks like this:

8:00-10:00 Therapy Session 1
10:30-12:30 Therapy Session 2
12:30-3:30 Lunch, break, nap
3:30-5:30 Therapy Session 3 (some days)

Plus an extra session two days a week for OT and speech.

I'm anxious about having people coming in and out of the house all day. How will it impact us? I already cringe whenever the doorbell rings because our dog goes insane. Is it going to be like that every time or will she start to get used to it? Am I going to spend all day, corralling the damn dog to make sure she's out of the way?

I'm anxious about how hard Moe is going to be working. Will he still be the fun-loving kid he is now? Or will we somehow break his spirit? Are we doing the right thing pulling him out of the center based program he is finally used to? How will ever get to socialize with other kids?

I'm anxious about my own well being. I'm going to be stuck at home a lot. Will I ever get out? It is so much harder to run errands with both kids. What am I going to do at home all day long?

I realize I'm just dreading the unknown. Of course, we'll work everything out. I'm hiring a dog walker. Moe will still be himself, charming all of the therapists with his giggles. We'll go to playdates on lighter days and I'll find a hobby or two. Maybe start cooking things that take longer than 30 minutes.

Mostly, though, I'm anxious (the excited kind) to see all the wonderful progress I know Moe is going to make. As Moe's final report from the center said "He is moving in the right direction. Hooray for Moe!"

Prepared for the fight

After we got the official diagnosis and recommendations from Dr. S, we started bracing ourselves for a fight. We were requesting yet another change from the regional center, this time asking for 25 hours of intensive home therapy, including ABA (applied behavior analysis), speech, and OT. We weren't sure if the new request would be approved, and I started researching what we would need to do to get coverage from insurance.

What I found was appalling. Most insurance companies, it seems, make it nearly impossible to get coverage for these services, considered "educational" rather than medical in nature. One document I read from our insurance company, for example, says they don't cover "experimental or unproven" therapies, such as ABA, even though their own website lists ABA as the autism treatment recommended by the American Association of Pediatrics. They make you go in-network and only to licensed providers, but often only have one provider whose practice is probably full. You get the idea.

Fortunately, our request was approved and our new services are going to start next week. Although I know this is the best thing for Moe, I am a little nervous as to how this is going to affect our family life (and my sanity). I'll be getting the complete schedule later this week, but therapy blocks, which take place at our house, are scheduled from 8:30-10am, 10:30-12:30, and 3:30-5:30. Moe is booked every morning block and some afternoon blocks.

I'm thankful that I won't have to fight the insurance company this time around. I feel for the many families that are fighting on multiple fronts to get the services their kids need. I know many are fighting to get autism coverage included in healthcare reform, and perhaps someday I will be able to help in this fight. For now, I need to devote my time and energy to the work that needs to get done here: helping Moe grow and thrive.