autism

Unexpected Joys

Moose has really been trying to talk a lot more lately. Not just single words, not just repeating words we tell him to say, but spontaneously stringing together a few words at a time. I don’t understand what he’s saying half the time, but still! That in and of itself is a great joy. But I’ve discovered that I’ve found joy in something else I wasn’t really expecting.

I’m finally getting an idea of what his voice sounds like! I know to most people, this wouldn’t be a big deal, and for most parents of almost-four-year-olds, it probably wouldn’t even make sense. How can you not know, after all that time, what your own child’s voice sounds like?

But, when all you get is one word at a time, and not on any kind of regular basis, and when even that word is a struggle to get out, you don’t know. You wonder what a normal speaking voice sounds like for your child. Sure, I’m well acquainted with his shrieks, because that’s been his only really way to express negative emotions outside of crying, and I know (kind of) what his babbling voice sounds like. But now I’m learning what his speaking voice sounds like. And I’m even learning that he often purses his lips in a very certain way when he’s really trying to talk. And I’ve found a great deal of joy in these discoveries. As much as I feel like autism has taken from him (and us), I also know I never would have found this kind of elation in something so simple if autism wasn’t a part of our lives.

I’ve been waiting for this for a long time, and let me tell you, it is a beautiful sound!

Not Just a River in Egypt

I guess I can’t deny it any longer.

Moose has autism.

When we saw the doctor that gave us that terrible diagnosis, I really didn’t believe it.  And the therapists that were working with him were pretty skeptical.  So, I allowed myself to believe that she was wrong–she saw him on a bad day, she didn’t have all the information, she had the wrong information.

But, he’s been in school for five months now, and while he is making good progress, it’s not the progress you’d expect out of a simple delay.  He’s also exhibiting a few more signs of autism, which could be imitation of something he’s seeing in school, but is more likely just proof that he has been affected by this.

It’s hard, because he doesn’t have a lot of the “traditional” symptoms of autism.  But that’s the bitch of this thing–it manifests in so many ways, that “traditional” or “typical” don’t really mean anything, because it’s a disease (disorder? what is the right word for it?) that’s based on being atypical, even within itself.

A part of me still hopes that one day he’ll have a big breakthrough, and we’ll laugh at ever having thought he was autistic.  But realistically, that’s probably not ever going to happen.

Moose’s Story

So, I’ve realized that not everyone that reads this blog knows Moose’s story, or has been able to piece together the jumble of posts that my brain puts together.  So, I’ll try to summarize what we’ve been through, and how it’s affecting him.

Let me start by saying that he is just the sweetest, most loving little guy.  He adores his baby (and she is *his* baby), he’s so happy, he makes us all so happy.  He was laid-back and cheerful as a baby, and he’s still (for the most part), very easygoing.  His middle name is Isaac, and he lives up to it, laughing all the time, and filling our lives with laughter.  He has delays, but they in no way detract from his sweetness, his loving nature.

I first noticed a potential problem with his speech in the summer of 2007.  (This is where it becomes evident what a bad mommy I am.)  I thought he might be a little behind in talking, but then again, Turkey didn’t really start talking in sentences or using a wide range of words until he was about 22 months old, and Moose was only about 20 months old at that time, so I figured it was just a boy thing and ignored it.

As any parent knows, time just flew by, and before I could blink, it was summer 2008, and his speech had still not caught up to where it should be (I told you I was a bad mommy!).  The issue had popped up here and there in that year’s time, but everyone, including his doctor, just chalked it up to the fact that his two older siblings talk constantly, and he either didn’t need or want to say anything.  Plus, boys usually do talk later than girls, so I just figured it was no big deal.

But, by this summer, I realized (with some help from Ryan, telling me something that I needed, but didn’t want, to hear) that we seemed to be dealing with something more than a child with siblings who talk too much, so I finally did what I should have done a full year earlier (seriously, horrible mommy alert), and called Early Intervention.  A parade of therapists came through our home–developmental, speech, occupational–to evaluate him, and they all seemed to agree that we were looking at Sensory Processing Disorder (or one of the other names it goes by), which was a little overwhelming and distressing, but not terribly frightening.  So, he started speech and occupational therapy, and we waited for an appointment with a developmental pediatrician to get an official diagnosis for him.

That’s when things started to go downhill.  She diagnosed him with mild autism, and scared the life out of me with the stuff she told me he needed to be doing.  This was a very low time for me, and I really struggled with this information.  His therapists (along with most people who know him) were surprised by the diagnosis, because he doesn’t really fit the “typical” autism mold.  The therapists even assured me that new research is showing a lot of children “grow out” of the diagnosis by age five, which we are still hopeful for.

Anyway, with this new information, we realized that to continue getting the kind of therapy services he needs, we really needed to put him in the public school (Early Intervention runs out at age three, and we can’t afford private therapy to the extent he needs it).  He has what can only be described as a severe speech delay–Ladybug is more understandable than he is in pronouncing words, and her vocabulary may overtake his soon, at the rate they’re both developing.  But, in school, he can get speech therapy daily, as well as occupational therapy, and have models of other children his age who are talking.  And school can help him with his attention span issues and following directions.  So even though I’ve never been a fan of putting three year olds in school, and even though I’ve been bitten by the homeschooling bug, I realized that this was something I had to, because it’s best for him, even if it’s killing me.

We started the lengthy process of transitioning from Early Intervention to the school system.  I think this involved two or three meetings with school officials in our home, and three meetings at the school.  It was, at times, maddening how many meetings they wanted and how much paperwork there was.

So, Moose is in school, in what is essentially a special ed program for three year olds.  It’s cross categorical, so the children in his class have all kinds of different issues–some mental, some physical, and some like him, with what I guess you would call neurological problems.  I don’t know if it will be long term that he’ll be in public school.  I do know that I’m not qualified to give him therapy services, and by being in school, he is able to receive more therapy minutes each week than if I was just bringing him after school.  The student-teacher ratio is really good, so he’s getting a lot of focused attention.

I pray that this is what is best for him.  I was afraid that it would be really overwhelming, and he would shut down more.  That hasn’t happened, and he does seem to be following directions better at home.  His reports from school have all been excellent–they say his behavior is good.  I don’t know if he’s had regular meltdowns there, but if he has, they haven’t been bad enough that they’ve felt the need to notify me.  He also seems to be jargoning more, and has said some more words here and there, but I’m not sure that his overall speech has changed a whole lot.  Then again, I can’t expect everything at once, I know.

So, that’s where we’re at.  It’s really hard, because it goes against everything I’ve ever thought about parenting, but Moose is different from my other children, so I guess he just needs different things.  It’s still my prayer that he “outgrows” this thing, but if he doesn’t, well, we’ll make it through that, too.  Just taking it one day at a time for now.

Baby Steps

An update on Moose, for those who are interested…

He’s receiving speech therapy twice a week, and occupational therapy once a week, all in our home.  That’s the best thing about Early Intervention as far as I’m concerned.  We don’t have to worry about going anywhere, and I don’t have to figure out what to do with the other three children–they just play in the playroom, and we do the therapy thing in the den.  I’m still having a tough time finding the correct balance for my time with the three hours of therapy a week, plus homeschooling and my usual mommy stuff, cooking, cleaning, laundry and taking care of the finances (I know three hours doesn’t sound like much, but it can throw a wrench in the day, especially when the appointments take place at weird times!), but we’re working on it, and the main thing is, Moose loves it.

Both therapists have told me that they are impressed, and frankly shocked, with how quickly he is progressing.  According to them, most children do not move at the rate he is, and since I’m assuming they have no reason to lie to me to make me feel better, I guess he’s doing fantastic.  It can be hard for me to see the improvements, probably because I’m with him all the time (kind of like how you can’t notice your own children growing, until you see that their pants are too short), but when I think back to how he did with the evaluations in our home back in late July, I do notice a big difference.  His attention span, particularly for adult-directed activities, is phenomenally longer.  He is still not talking much on his own, but he’s making many more attempts at repeating what we say.  His eye contact seems to be improving, and he’s interacting more.  Oh, and he’s doing a great job with following directions, and not just when he wants to!  All great things, and all what a mommy wants to hear!  Yeah, he still has his moments, but what almost-three-year-old doesn’t?

His therapists tell me that there’s a very good chance he’ll “outgrow” his diagnosis in a few years, which would be fantastic.  For now, I’m not going to think ahead to then–obviously, that’s what we want, but I don’t want to get my hopes up for something that might not happen.  He will be going to “preschool” four days a week once he turn three–I wish it was a three day program, but I’m feeling much better about it after talking to an actual representative from the school district (probably the best source of information, huh?  That doctor had no clue what she was talking about in regards to our schools!), and he’ll continue to receive therapies there, which I know will be good for him.  If I can swing it with insurance, we may even be able to keep seeing our speech therapist once or twice a week, and she even said she’d keep coming to the house, so that’s something I’ll have to work on before his birthday.

Overall, things are looking good, I’m feeling a little better (although, I still have moments where I break down sobbing, thinking about my sweet little boy having to deal with being autistic for the rest of his life!), and most important of all, Moose is happy (as always!) and improving in ways I’m sure he doesn’t even realize, but which make the rest of us feel really good!

Sorting it Out

Well, it’s been a week since Moose was “diagnosed” with autism.  I’m still not sure how I feel about it.  On the one hand, I have so many issues with how the appointment was handled, how the doctor treated Moose, and how she questioned me, that I’m not inclined to take anything she said too seriously.  The confirmation I’ve received from both his therapists that this is *not* how the appointment was supposed to go at all also has me reluctant to trust her opinion.  On the other hand, I do know he has some problems (speech being my greatest concern) that need to be dealt with, and I’m also now hyper-paranoid–every time he does something unusual, I freak out, wondering if that’s more “proof” that’s there’s something seriously wrong.

So, I’m not really sure where I’m at with things.  I’m meeting with our caseworker and a representative from the school district in two weeks, to discuss transitioning him into their special ed Pre-K program.  I did learn that the doctor was 100% wrong about sending him full days, everyday–they don’t even offer that for someone his age.  For right now, at least, I guess I’m OK with him going part days–he’ll be getting more speech and occupational therapy, and I know that will be good.  I hope I don’t *have* to bus him there, because I’m very uncomfortable with that.  I’d much rather drive him myself.  Actually, I’d rather he didn’t have to go to preschool at all, because I’m no big fan of preschool (neither of my older two went because I’m so opposed to it–well, that and the whole homeschooling thing, but that’s kind of a new development), but I guess I’m going to have to view it more as therapy than as school.

For now, though, I know I do *not* want to start calling support groups and doing research and ordering resources.  Maybe this makes me a bad parent; maybe it suggests that I’m in denial.  But even if this diagnosis of autism does “stick” with him, I don’t want that to become all we’re about.  No offense to anyone who does choose to put their focus there, but I’ve seen parents who put all of their efforts into learning about causes (all the anti-vax folks), trying to raise awareness (mostly to not vax), using scare tactics, only hanging out with other families who have this diagnosis.  Maybe that’s fine for them, but that’s not who we are.  I have three other children, besides the fact that we are more than Moose’s diagnosis.  I just want to keep living our lives the way we have been, while getting him the help he needs.  I certainly don’t need a new group of friends who are dealing with the same things–I just need friends.  People who knew us before this word changed our lives, and who won’t treat us any differently than they have been.

It is what it is

Today was Moose’s appointment with the developmental pediatrician.  It was not at all what I was expecting. First of all, I was under the impression that in addition to the doctor, there would be a variety of therapists like at our home visit.  No, just the doctor.  That’s OK I guess–no duplication of efforts there.  Anyway, I thought there would be more play based observation, which there wasn’t.  Really, most of the appointment involved her asking me questions from a screening tool, and then recording my answers to get a diagnosis. I didn’t entirely trust this tool–there were times I felt like she didn’t understand my answers, and other times when I felt like she was trying to prompt to answer what she felt was accurate.  I hope it all came out the way it should have.

She had already been over the reports from the three therapists who had observed him, so she had an idea going in what she was looking for, I guess.  She also observed Moose, but there wasn’t a whole lot for him to do–we were in a typical doctor’s examination room.  Not too exciting for a not quite three year old. She also did a brief physical exam at the end of the appointment–not sure what the point of that was, but she seemed satisfied.

Anyway, after going over the screening tool, she gave Moose the diagnosis of mild autism.  She said that with therapy, in the future the diagnosis might be “downgraded” to PDD, but for now, it is what it is.  Her recommendation is that we send him to the preschool program through the special ed branch of our school district, and, while she wasn’t sure if they even offer it, she thought full day would be best.  I have several problems with that, beginning with the fact that he isn’t even three yet, and still needs a good long nap, but whatever.  I have to call the district, and they’ll tell me if they even offer full day for someone his age, which they very well may not…we’ll just have to see.

Here’s what bothered me about all this, aside from the diagnosis itself, which has me quite down.  First of all, she was a half hour late for our appointment.  First appointment of the morning, you don’t expect that, but she got stuck in traffic or something…didn’t really get us off on the right foot, and she wasn’t even apologetic, which I didn’t appreciate.  Her manner was a bit brusque, too, which wasn’t helpful to me, as I was upset, but this appointment wasn’t about me, so I can get over that.  I didn’t like her basing her observations of Moose on only what she saw of him in an exam room for an hour, though.  There was nothing for him to do, and all she could do was point out him opening and closing the doors on the cabinet.  Yes, a repetitive behavior that can be a red flag, but he doesn’t stuff stuff like that to that extent at home, or in other environments where there is something else to do.  He was bored, plain and simple. She also pointed out how he didn’t want to come to her and interact.  Again, I get that that can be a red flag, but that’s not how he usually is with people.  From the first day the therapists came into our home, he has been sitting in their laps, playing with them, and being generally sociable.  And he didn’t know them from Adam, although he is getting to know them now.  Isn’t it possible that he just didn’t like her?  I didn’t really; why should he?

And the other thing that gets me is that all three therapists that observed him reassured me that they didn’t think he was exhibiting traits of autism, that it wasn’t something I should be worrying about.  All three of them saw him on different days, in different moods, and yet they all told me this, without knowing the others had said it.  How can they all be wrong?  I know that they’re not doctors like the woman we saw today–they’re “just” therapists.  But this is their specialty, and I don’t think they’d just tell me what I want to hear, so what’s up with that?

I don’t know.  I really wasn’t expecting this diagnosis going in.  In my gut, I thought she’d say PDD, which is on the autism spectrum, but I certainly wasn’t prepared for a full-blown autism diagnosis.  It’s good that it’s mild, and I guess I have no choice but to put him in the preschool, for at least part of the time, and do all of the therapies that are being recommended.  But I really don’t think she got a good sample of what his normal, daily behavior is, and I really wish there was some kind of option for a second opinion or something.  I suppose that I sound like I’m in denial; maybe I am.  But if he’s going to be labeled with something this serious, I’d like a little more reassurance that it’s an accurate label.  I find this whole thing very troublesome.

Tin Man

You know that scene at the end of “The Wizard of Oz,” where Dorothy is getting ready to go home, and the Tin Man says something to the effect of “now I know I have a heart, because I can feel it breaking?”  That’s how I feel right now.

Obviously today’s appointment did not go well–it was about the worst result I could have expected, and now my heart is breaking.

Apprehension

So, tomorrow is Moose’s big appointment at the diagnostic center.  Already, my heart is in my throat.  Part of me wonders if I will ever feel “normal” again, because ever since I called Early Intervention (thus admitting that there was a problem), I’ve been feeling slightly off center.

I’m so worried about what they’re going to tell me.  What if the diagnosis is more than the sensory issues the therapists have been preparing me for?  Obviously worrying about autism here.  Yes, I know that the “official” diagnosis won’t change who Moose is, won’t change how much we love him, should actually help him get the help he needs, but still….there’s something daunting about having a label placed on him that may follow him his whole life.  I know I shouldn’t worry about the future, have no business even thinking about what future years will hold for him, but I can’t help but think ahead to whether or not he’ll be able to have a career, a family, be independent, depending on the diagnosis.  Which I know is ridiculous, because, again, whatever word they put to it won’t change who he is or the path he’s on.  I know that I should just be grateful that whatever we’re dealing with isn’t life-threatening, doesn’t affect his health, shouldn’t affect his happiness.  But my mommy heart is still heavy…

Conform to Survive?

I read this quote on a forum I frequent today, and it’s been bugging me ever since:

“Conformity is like a survival skill really. There has to be some comformity to avoid being harassed.”

To provide a little context, the conversation was based around a woman who has a daughter with Asperger’s.  Her daughter is eight, and going into the third grade, and although intellectually she functions at a fifth grade level, developmentally, she’s at about a four-year-old level.  Anyway, this little girl wanted a character backpack for school this year, specifically a Baby Jaguar bag from the TV show Go Diego Go. Yes, this bag is a little young for someone of her age.  And yes, it would probably be beneficial for mom to steer her away from choosing that style if she wants to avoid excessive teasing.  I can appreciate that, because it’s horrible to be made fun of, and even worse to have to watch your child go through that.

What I don’t get, however, is the advice she started getting from other mothers.  Apparently (and I don’t have experience with this yet, as my children aren’t old enough), the popular thing in that age group is Hannah Montana and High School Musical.  The first advice she was given was to steer her daughter toward a bag with one of those themes, if she “had” to have a character bag in the first place.  You know, help her fit in more.  Not really my style, but whatever.  The thing is, the daughter doesn’t like those shows, and isn’t really even aware of them.  She doesn’t want to watch them, talk about them, or get stuff merchandised with them.  Which, I would argue is entirely appropriate given her developmental age level.

But some mothers took it even farther.  The basically told this mother: “you should sit down with her and make her watch those shows, and hope that gets her to like it, and then she’ll be doing things that other kids her age are doing.”  Now, I’m sorry, but this advice is just appalling.  First of all, if the girl is developmentally that behind, she shouldn’t be watching shows that are so far over her comprehension.  It’s just inappropriate.  We wouldn’t be encouraging (I hope!) a four-year-old to watch those shows, so why would we encourage a child who is at that developmental level to watch?  Never mind that I don’t really get why eight-year-olds are watching a show called High School Musical–isn’t high school a teenager thing? But again, whatever.  Second of all, it just makes me crazy that we are so obsessed with fitting in in this world that we would actually encourage a mother to try to force her child to watch a show the child doesn’t like, and is not even developmentally ready for, just so she can fit in.  Is TV that important that we really need to push that issue?  I really hope not, because if it is, my children are in serious trouble!

So, the quote above is from the eight-year-old’s mother.  I’m assuming that because she has become accustomed to dealing with a daughter with a developmental issue, she is particularly sensitive to trying to help her child fit in with other kids her age.  But I still think it’s terrible that we push conformity to that extent, instead of celebrating our differences.  On one hand, sure, you need to learn to get along with others and cooperate in society (this does not necessarily mean you need to conform to survive!)–you wouldn’t last long in a job as an adult if you didn’t get that figured out.  On the other hand, though, you need to know who you are, especially if you’re a Christian, so that you don’t let others dictate your likes, dislikes, and most importantly, beliefs.

I find this attitude especially troubling, because this conversation took place on a Christian forum, among Christian mothers.  If anybody should be not worried about conforming, especially to what’s popular in the world, isn’t it Christians?  Doesn’t the fact that we’re Christians in the first place pretty much guarantee that in a lot of ways (maybe even most ways) we’re never really going to conform?  I’m not saying she should throw her to child to the lions to be made fun of, but I wish she could have the confidence in herself, and her daughter, to encourage her to be the child God made her to be, instead of trying to fit in so much with the world.

What Can I Say?

It was a hard day.  The meeting with the occupational therapist went better than I expected, both in her attitude, and in Moose’s responsiveness, especially given that it was nap time.  She does, apparently, view church as “boring”…couldn’t believe Moose would ever sit through a service, especially since we *gasp* don’t bring toys for him.  Whatever–that was kind of telling, especially given her attitude about some things yesterday.

Anyway, after she did her evaluation, the two other therapists and the caseworker joined her, and went over their reports.  There was nothing particularly surprising in them, but it is hard to sit there and listen to all of the ways your child is behind, to hear the words “severely delayed” in some areas, and even harder to read it in black and white after they leave.  It was made even worse by the way they chose to seat themselves at my kitchen table…they all squeezed together at one end, opposite me, which left me feeling very awkward, a little defensive, and kind of attacked.  I really wish Ryan could have been here, both as support, and as another set of ears and another source of judgement.  But I got through it.

Overall, the recommendation is three hours of therapy in the home per week.  Two speech, one occupational.  They also recommended a playgroup which we probably won’t be going to, some diagnostic testing (which could involve MRIs, genetic testing, and the requisite parent interview and observation of the child) which I guess we’ll do, but I’m not sure how I feel about, and then some really weird stuff.  A pressure vest to make him feel hugged, since he likes sensory stimulation (why can’t I just hug him?), a trampoline to bounce on…now, I’m with this kid 26 hours a day (and if anyone besides my nerdy husband catches that reference, you have my undying admiration!) and let me tell you, he doesn’t need to bounce more! Basically, they thought he would benefit from some “adaptive devices”, which I thought was a bunch of baloney, but ended up being a moot point, because E.I. only covers those through 33 months, which he will be in a few weeks.  Fine by me.

So, we’ll start the therapy whenever they can schedule two people to come out here, (not sure how long that wait will be–hopefully not too bad, since we’ve only got about three months left) and we’ll get a hearing test done just to make sure there’s no weird problem there.  I’m not sure that I want to “transition” him to the school system once he turns three–1.) I’m not a huge fan of preschool, and B.) I really don’t want him labeled as special ed this young, which he would be.

Frankly, I have some pretty strong opinions about this early intervention/sensory stuff that I’m sure won’t be popular.  To some extent, I really think that because our society is so conformist, and, even though people say otherwise, so unwilling to accept people that are different, that we have to put a label on children who are different, and try to “fix” them.  That bugs me–it’s taken me almost 30 years to realize that the things that make *me* “different” from a lot of others are the things that I like best about myself, and I was hoping to spare my children some of that agony.  I guess that’s just part of growing up, though One of the therapists today basically said “we want to make sure he’s just like other kids his age.”  I’m not so sure that I do–I just want Moose to be Moose.  Yes, I want him to talk more, and yes, I’ll do the speech and occupational therapy at least until he’s three, and see what kind of progress he’s made, but I’m not sure how much farther I want to pursue this. He’s obviously cognitively fine, which all the therapists agreed with, so maybe he just learns different, and maybe that’s OK.  They pointed out how self-motivated he is, which I tend to think is fantastic, especially in a child his age, but they said it almost like it was a bad thing.  I mean, I know he learns how to follow directions, but I also really admire how independent and focused and self motivated he is.

Anyway, the big things we’ll be working on (because we had to create goal statements to go into his file) are him talking to share what he’s thinking, and lengthening his attention span so he can do more focused activities.  If you could pray that he accomplishes those things I’d greatly appreciate it!