LIFE IS A SPECTRUM

If you look around our house these days, it looks more like we're digging in for the nuclear winter than preparing for summer vacation. But getting ready for a holiday period with an autistic child, a period with schedule and scenery changes galore, is a bit like going to war. The options include Extended Year Services through the public schools, a new preschool, or developing a summer program of our own to implement at home.

SMALL_Billy_Mudpile4

I don't mean to suggest that we're going to war with our child -- or even with autism, with which we've made a comfortable truce. We're battling “regression,” a term with which every parent of a special needs student becomes familiar eventually.

When the school system – most likely your IEP team – makes a decision about whether or not your child should have Extended Year Services (EYS), their concerns about regression play a big role in that decision. “Regression” refers simply to losing skills your child has attained throughout the year. (I wrote an article about EYS for the Special Needs Examiner, which you can read if you're interested in summer services, but for a variety of reasons, we decided that Billy was better off at home over the summer.)

Billy could happily spend the summer in the middle of a pile of mud with us occasionally throwing fish sticks in his direction. But we want to make sure that the stress of the summer schedule changes doesn't cause him to lose the ground he's gained in academics and life skills this year. Dave and I sat down and talked long into one night about our hopes for the summer, and eventually boiled down our goals to three simple ones:

Potty Training: If you have any suggestions at all in this area, I will pay you for them.

Sleeping: We want to get Billy out of his elaborate enclosed crib-style bed and into a “big boy bed.” Again, suggestions? How do you keep them in the bed if they don't want to stay there? Currently, he goes to bed each night at 7:30 p.m. but stays awake sometimes for an hour reciting books and TV shows and singing the soundtracks of every Charlie Brown holiday special from “Happy New Year, Charlie Brown” to “A Charlie Brown Christmas.” If he weren't in an enclosed bed, he would probably run around his room all night long. I guess we'll find out soon enough if that's true ...

Handwriting/Drawing: Billy has made HUGE strides in this area this year. At the beginning of the year, if handed a crayon, all he'd do is peel it or perhaps chew on it. Now he can write his name, copy some letters and shapes, and he really enjoys drawing.

We wanted to build on that interest and success, so we invested in a couple of different products. The first, “TV Teacher/Alphabet Beats,” is a DVD-based handwriting program recommended by his private occupational therapist. I wrote a detailed review of it here. Billy loves the little rhymes and songs, and I credit “Ms. Marnie” with teaching him to draw a spider.

When we attended his end-of-year conference at school, though, we were introduced to the program he's been using throughout the past year. A really impressive mult-sensory program, “Handwriting Without Tears” addresses what I'm told is one of the biggest problems with special needs kids and handwriting: They get frustrated because holding a writing utensil is difficult for them, so they can develop an aversion to handwriting and just refuse to do it.

“Handwriting Without Tears” doesn't even require them to touch a writing implement until they're ready. Instead, they learn to form shapes and letters first with wooden pieces and then Playdough. Then they move on to magnetic letters on a magnetic erase board before eventually moving up to a slate and tiny pieces of chalk. There's an easy-to-follow teacher's (or parent's) guide and a workbook with fun pre-writing exercises in it.

Despite all the pieces and parts, “Handwriting Without Tears” is actually less expensive than the “TV Teacher” program. For a complete set, both are going to run in the $100 range. However, you don't have to buy every piece at once.

We're going to use a hybrid of the two over the summer. Billy likes to watch the DVDs and draw along with Ms. Marnie, so we'll let him have that as a reward. And for 5-10 minutes each morning, we'll work with the tools in the “Handwriting Without Tears” program.

Who knows? Maybe by the end of the summer, maybe Billy will be writing this blog for me. Wish us luck! (And I'm serious about those potty training ideas – PLEASE post them here!)

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Potty Training

I have no experience potty training boys. This worked for my girls. During the warmer months, let them run around with a t-shirt on. No underwear, diapers, or pullups. Prepare to clean up a lot of messes. Have your choice of potty readily available. We used a regular toilet with a seat over the top to keep them from falling in. We used a reward system that consisted of stickers, toys from the dollar store, and lots of hugs and praise. Through trial and error, the girls learned to listen to their bodies. My younger daughter (who has the delays), wasn't potty trained until 3 and 1/2. I really don't think that she had the muscle control, nor the awareness until then. I hope this helps!

Sleeping

I had to sit outside my son's door for a week to get him to stay in his bed but after that he pretty much started going to bed and staying there. We still have problems sometimes, but not as bad as that first week. It's going to get worse before it gets better but stick with it and stick with his routine and he'll get it.

Potty Training & Big bed

Amanda.. what have you tried so far with potty training? As for the big bed.. we got him one over a year ago, and at first it took him a while to stay in the bed, and "get" that it was time to sleep.. maybe 2-3 weeks.. but after that, he just got it, and stayed there and went to sleep.

From Amanda Broadfoot

Hi everyone! Thanks SO much for the input!

Leah: I think Billy may have lacked the muscle control until recently too. But he has just started sleeping (mostly) through the night without wetting his Pullup, so I think we're finally ready. Now that school's letting out and I'm going to have him at home, I'm going to give that technique of letting him go naked a try.

Sarah: I'll be honest: we haven't tried anything with real consistency. He does have a picture schedule for the potty and understands -- and can complete -- every step of the process by himself. The problem has been getting him to WANT to. The second I bring up going to the potty, he hits the floor screaming. Once we're there, he goes through each step (except poop - we haven't had any poop on the potty yet) by himself.

But I think we've come to understand over the last few weeks that he needs to feel more control over when he goes. A couple of times, we've left the door open to the bathroom and let him wear "big boy pants" and he actually went to the potty on his own! Also, at school he goes at VERY predictable times. It's on a picture schedule and he has a timer and he knows exactly when he's going. AND he doesn't give them a moment's trouble about it.

His speech therapist at school suggested a social story explaining that usually we go to potty on a schedule but "sometimes we have accidents" and that's when we have to go to the potty unexpectedly. And then have a picture of the potties that we sometimes have to use: at therapy, at a fast-food restaurant, etc. I'm going to create this social story this week, and I'll let you know how it goes.

Thanks again everyone for chiming in!

Potty training video?

Have you tried getting a potty training video for him? As much as he loves his shows, maybe a video about potty training would be helpful???

Potty training video

His wonderful aunt sent him an awesome Elmo potty training video, which he and Willow are now both obsessed with. I'm hoping this translates to impending potty success. Watch this space ...

Total 6 comments

I was always a great test taker in school. I actually liked tests ... certain types of tests, anyway, the kinds where you regurgitate facts like names and dates or write essays on a particular subject. When math tests became about looking at a cone and figuring out its volume, I might as well have been asked to conjugate Martian verbs. Not in my wheelhouse, let's say.

testing

But I never got nervous about tests, as long as I was prepared. I never understood those people who got panic attacks, blanked out, or broke out into hives at the idea of a test.

Until, that is, I watched my son get tested last week.

He's 3 1/2 and he had his first hour-long standardized test. Yes, standardized testing for a 3-year-old. And the hour-long session was just the FIRST part of his testing -- he had two more parts of the test after that.

I was asked to go with him, to help keep him on task and engaged as he completed a series of tests on everything from stacking cups and blocks to writing letters. He started out doing really well. In fact, when he copied three letters just as they were written on the page, my jaw dropped. I didn't know he could do that!

Twenty minutes into the session, though, Billy was going all "wet noodle" on me, sliding out his chair, as though his spine were made of Jell-o. He crawled under the table a couple of times, started reciting "Happy New Year, Charlie Brown" at top volume to drown his teacher out when she asked a question about the color of a carrot. Unfortunately, there are no bonus points for informing the teacher that Leo Tolstoy wrote "War and Peace" and that his wife, Sofia, copied it out seven times by candlelight. Nope, you've still gotta know the color of a carrot.

I tried a trick I learned from his OT (occupational therapist) and took a break to do some "wheelbarrow walking." If you aren't familiar with this move, it's when you lift the child's feet in your hands, and they use their hands to walk across the floor. We would wheelbarrow walk around the room a few times, and Billy would settle down enough to be able to point to a picture of an ice cream cone or draw a couple of vertical lines. Then we'd hit the floor again, and wheelbarrow walk for a few minutes.

Suddenly, I had visions of myself attending medical school with him one day, and wheelbarrow walking him through the lab at Harvard until he felt comfortable enough to go back to dissecting his corpse or injecting lab rats with something. And I'll do it too. I'll probably be in my sixties, and he may have to carry me around campus in a big backpack, but that's probably good therapy for him as well.

Anyway, after an hour of the standardized testing, something in Billy just flipped and he was done. He was beyond done. He was overwhelmed, confused, exhausted emotionally and mentally.

And he started biting himself. For the first time ever, he started doing this incredibly self-destructive behavior and my heart just broke for him. What had I done to him? Why had I agreed to subject him to this torture? How did I not see that he was unraveling?

His teacher, as patient and loving a pre-K teacher as we could ever hope for, immediately ended the test. She said she could break up the rest of it, do some of it outside, or ask him a few questions here and there when he was in a better state of mind.

When I talked to another therapist about it later, she asked me, "What is this testing for?"

I had no idea.

"Did you give permission for him to be tested?"

I had no idea. If they asked, I probably did. I never occurs to me to say no. I'm a rule follower. Remember, I like tests?

After asking several people, I still have no idea how this test data will be used. It's not used to determine whether he qualifies for services. Apparently, that won't be re-evaluated until before he starts kindergarten. Best guess, it's some kind of progress test.

But that makes no sense either. Billy has five therapists, a full-time classroom teacher, two teacher's aides; we have an IEP, regular progress reports on his IEP goals and frequent parent-teacher conferences. No one is in any doubt as to Billy's progress -- except, apparently, me, because I had no friggin' clue that he could write letters or fasten buttons. He's been holding out on me.

Long story short, I've learned a valuable lesson about standardized testing. There's still a lot I don't understand about it. There's still a lot that frustrates me about the existence of standardized testing -- even though I know that in some ways it's a necessary evil and I don't really have a viable alternative to suggest, considering the resources, and lack thereof, that our public school system is dealing with.

I'm happy to report that Billy was totally fine once the test was over. When I led him back to his classroom, he looked in the door at the other kids seated for circle time, spread his arms wide and called, "All Billy's friends!" as though he were greeting them after an absence of much longer than an hour.

The next time I'm asked about testing Billy, I'll have a whole host of questions about the need for, use of, and length of the test. I'll also pay much closer attention to my child during the testing. Rather than fantasizing about him thanking me personally when he wins his Academy Award one day for Best Director of the highest grossing film of all time, or about how I'm going to get his limited diet of mac-n-cheese and chicken nuggets on the space shuttle -- I'll try to indulge my parental fantasies a little less and watch my child a lot more closely in the here and now.

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I thought I was turning 40 this week. That's how stressed out I've been; I lost a year.

Mandi38Birthday

I'm actually going to be 39 on Friday. I still get excited about my birthday. Dave calls it "Mandi Awareness Month," because I start reminding him well in advance of the big day and make it very clear what my expectations are: a birthday card made by the kids, a cake with candles that Billy can blow out, a second DVR for our bedroom, and a trip to some place with daily maid service and a heated pool.

But this year has been a little different. Or at least, this month has been a little different. It's been tougher, more stressful.

I want to be honest about the stress and the hard times, because I always write about our breakthroughs, our happy moments and our family's abundant joy. Those moments are worth writing about. But so are the hard times.

I recently read a post on one of the autism support group message boards in which a parents said something like, "What am I doing wrong? I read about all this great progress that other parents have made with their autistic kids and I actually resent them. I have a terrible attitude. I feel depressed. Most of the time I don't know how I'm going to get through the day. I think I have the worst attitude of any parent on here. Sometimes I resent my own child."

Sometimes we all do. And I want to apologize right now if I've ever given anyone the impression that I don't have those days. I do.

I have days when I don't know how I'm going to get through it. I have days when I feel a LOT older than 40. I have days when I am so angry at all these parents who have it so easy ... even though I know in my head and my heart that nobody has it easy. We all have those days.

The past couple of weeks have been hard because Billy seems so angry at me more of the time. He's angry about being asked to go to the bathroom. He's angry about getting dressed. He's angry about getting into the car. One night --or morning, I should say, because it was 3 a.m. -- he was angry about it being dark outside. He pulled the curtain back, looked out the window at the darkness and screamed, "No more night! Good morning! Good morning!"

I'm flattered that he thinks I have control over that, but I was really friggin' tired and not seeing the funny side.

An OT and a couple of parents of autistic kids have all told me that frequently a period of bad behavior precedes a big leap in cognitive ability: the one step back, two steps forward theory. All I can say is Billy must be getting ready to do calculus, if there's any truth to this theory.

We spend so much time trying to understand our kids' emotions, validating their feelings, teaching them how to handle stress and fear and anger. And meanwhile, we beat ourselves up and invalidate any negative emotions we might have as parents.

It's okay to feel like you don't have a handle on things. Frankly, I don't trust anyone who claims to have it all together. But even in the midst of this stress and anger and even depression, we have to keep going. We're parents and we don't get paid vacations. That being said, when I'm having a really hard day, here are a few things that help me center myself again:

1. Asking for help: It sounds so simple it's stupid, but you MUST have someone to help you sometimes. If you aren't lucky enough to have close family around, reach out to the autism community, to your church, to your closest friends, and create a network of moms on which you can lean. Be honest with them, and take the step of actually calling on them, even if it's just to take one hour to yourself.

2. Support groups: Part of the problem with having kids, is that you often don't have time to join the groups who can support you. Luckily, there are a lot of great online support groups now. The members may not be in your back yard, but they can certainly commiserate and very often, they have very good ideas for tackling problems. I am a regular contributor on Circle of Moms Autism/Asperger's Support Group, Autism/PDD Message Board, and the Floortimers Yahoo Users group. There's also a Special Needs Kids section of MomsLikeMe.com.

3. Exercise: Nothing relieves my stress like a long walk. I put the kids in the stroller, where they're safe and sound and strapped in, give them each a cup of juice, pop in my earbuds and actually listen to a book while we walk for an hour. A side effect is that I'm in better shape than I've been in a long time. I truly hate every other form of exercise, but I like to walk. And I like to read.

4. Clear the schedule: When all else fails, when you're overwhelmed and your kids are melting down and you're behind on 45 different projects and you don't know how you're going to get it all done, cancel some stuff. This was one of the hardest things for me to learn to do. But sometimes an afternoon free of appointments and car rides and transitions is just what you and your kids need. People will understand.

5. Clean something. I organize areas of the house when I get stressed: closets, drawers, shelves. I've known people who tackled their ovens, bathrooms or ironing whenever they got overwhelmed. Parenting an autistic child is so full of complicated problems and questions with no easy answers; those questions, and the answers, change from day to day. Sometimes it feels really good to have a problem as simple as a messy drawer to deal with: easy to solve, you know when you're done, and it's easy to see that you've made progress. Parenting is never that simple.

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Despite the title of this post, I'm not writing about a fear that Billy will run off to Vegas and marry a showgirl.

Billyruns

No, it's just the running that scares me -- and with good reason. The behavior therapist who's working with him at school says this running -- as far and as fast as possible at the drop of a hat -- is called "elopement."

Yes, I said "behavior therapist." As much as I am a proponent of Floortime therapy and the developmental approach, I do believe that behavior therapy is effective on behavior problems.

For those of you aren't familiar with the "civil war" going on in the autism world, there seem to be two camps, with parents either choosing sides or vascillating between the two, pitching their tents a little closer to one side or the other.

For a few years now, behavior therapy has been publicized as the only successful treatment for autism. That is hogwash (in that it is the ONLY successful approach, not that it has been successful, which is undisputed), but it is a position widely adopted by the media, in part because of the successful lobbying/press efforts by ABA therapists. They are organized, well-funded and they get things done. (Just as an aside, I would like to know what happened to turn the TV show "Parenthood" into a VERY successful Public Service Announcement about behavior therapy.)

Applied Behavioral Analysis "is a system of autism treatment based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences," according to About.com. (I used their definition because it's simpler and easier to understand than that on the Association for Behavior Analysis International page.)

In the past, I have heard some occupational therapists and developmental therapy devotees describe ABA as "dog training" because of its emphasis on repetition and reward to alter surface behaviors. For instance, behavioral therapists might focus on getting the child to sit for longer periods in class or eliminating stimulating behavior like hand-flapping or spinning. To some degree, all parents naturally use behavioral principles to reinforce good behavior and eliminate negative behaviors.

That dog training image, though, is the image I had in my head less than a year ago when we wholeheartedly adopted Floortime, a strongly developmental approach, as our philosophy of therapy -- a philosophy and outlook we still consider our guiding principle.

Often seen as the opposite pole to the ABA approach, developmental-based therapies follow the child's lead, de-emphasize routine and repetition over following the child's "joy" and trying to create desire for communication. But to compare apples to apples, let me go back to About.com for their definition: "Developmental therapies are intended to directly addresses autism's core deficits. To achieve this goal, they recommend that therapists and parents work with the child's own interests or actions to slowly build engagement, interaction, communication, affection, and then specific skills such as logical reasoning, symbolic thinking and more."

Strengthening Billy's ability to communicate is our primary goal. Everything will get easier once he can successful describe what he wants, what he feels and what he needs. We have seen amazing gains on this front since we adopted a Floortime approach and enrolled him in occupational and speech therapy with professionals who also believe in a more developmental approach.

All that being said, it's hard to communicate with a child who's half a mile away from you and increasing the gap with every stride of his long legs.

Last week after occupational therapy, as we were going through our getting-into-the-car routine, he suddenly slipped past me and bolted. It happened in an instant and was seemingly unprovoked (I say "seemingly" because I don't know what provokes him sometimes; he might have been hot and wanted fresh air).

Within seconds, he was around the side of the therapy building and there I still stood, with Willow still in the stroller and Billy on the run. I was terrified, frozen, unprepared.

I pushed her as best I could as far and fast as I could until I could make eye contact with him. He had cornered a nearby nightclub and was standing on a rickety deck, a few feet from stairs that went down towards ... what I don't know. And he was grinning at me.

I screamed to him, begged him to him to come back. "Willow is scared," I said. "She's by herself (she was a few feet behind me) and she wants Billy to come back."

He seemed to consider for a few moments. It could have gone either way. But slowly, he shuffled back toward me, until he was within my grasp.

I admit it: I yelled him then. I yelled at him that he had scared me and he was never to run off. And of course, then he got upset and tried to pull away again. It just went from bad to worse until I was able to bundle everyone back in the car.

Then I cranked up the air conditioner and the Kindermusik CD on the stereo until I could barely hear the screaming in the backseat and lowered my head to the steering wheel and finally let myself start shaking.

He could have run directly into traffic, I told myself. He could have fallen off that deck. A hundred nightmare scenarios went through my head, none of which were productive. But I told myself one thing: I would not be unprepared for this particular scenario again.

My solution is not elegant: I attach him to me with a strap locked on to his belt loop the second we leave therapy. He might get away but he's not going too far too fast if he has to drag me and Willow behind him. And I reward him for getting into the car and waiting patiently for his car seat strap to be attached. Good behavior = treat.

The point of this long story is this: Sometimes there's a place even for dog training. It's not pretty but this particular behavior is an absolute no-go.

Do I think that behavior therapy can cure every autistic deficit? I'm certainly no expert, but I think pure repetition and reward is unlikely to create a desire for more rich communication.

That being said, I've learned enough about actual behavior therapy to realize that very few of them actually practice in this manner. Practical behavior therapists are adopting developmental principles, particularly with younger children. And many developmental enthusiasts are finding a place for the principles of behavior analysis.

Parents should weigh every bit of advice they get better than I did in the beginning. See for yourself before making a judgment. And see more than one therapist.

Also, realize that your child is going to require a unique recipe that only you can write. After watching your child over a long period of time in a variety of situations, you will be the best judge of what is a behavior problem and what is an autistic deficit. And when you try one therapy combination, it may not work, and the recipe will require some tweaking. And it may work for a little while and then your child's behavior or progress will require something a little different.

That's OK. We're parents. The only place we're required to set up camp permanently is in a place that makes our child happy.

Are any of you engaged in behavior therapy? If so, what behaviors are you targeting? How successful has it been? If you're adamantly opposed to this form of therapy, I'd love to hear from you too.

Reader Comments

Great article. I agree with your assessment that ABA and Developmental approaches used together are likely to produce a beneficial result.

I watched a Lovass film when I was an undergrad at UCLA. It basically was showing how he had cured Autism. After the film, the class critiqued Lovass' findings.

I loved the first line of the article.

Best,

Lili :)

PS: I agree and disagree with the grad student studying ABA. Although, s/he points out that the ABA trainers who are certfied, are great trainers of ABA. When I was at UCLA, the undergrads were trained to provide ABA training to children (then it was called) "Autism".

I think some of these uncertied undergrads had a lot of success. I believe they were not paid but received research assistant college credits.

However I cannot know more than the grad student learning ABA about that particular therapy. I remember watching Lovass' film and thinking... it seems so unnatural... but, again, it's been shown to be empirically successful...



ABA

Hello.
I'm a graduate student working on a masters degree in Applied Behavior Analysis. Currently, I work at two clinics on the campus where I'm learning to create treatment plans for children and young adults with autism and developmental disabilities.
I can understand the concern that ABA has the appearance of training an animal. In fact, it is true that behavior analysts study the behavior of some animals to better understand how consequences affect behaviors such as waiting, responding, and even on non-responding. However, I can assure everyone who wonders that BCBAs (Board Certified Behavior Analysts) are highly trained and effective in teaching the acquisition of skills like reading, math, writing, motor skills, etc. We approach behavior understanding that the environment has a lot to do with how we all respond to one another.
I feel that if people better understood the real principles of ABA (which are far deeper than discrete trial training, reinforcement, and rewards), then they'd understand its effectiveness.

One last comment. I wouldn't suggest that ABA is becoming popular because BCBA's have rallied together and publicized the field and lobbied effectively. It's because it's empirically-based and is purely scientific. No treatment is prepared without first studying the research and truly ensuring that the principles are sound. The science of ABA is what makes it truly effective. That's why the Surgeon General recommends ABA as the most successful treatment for autism.

Total 2 comments

I had the most incredible dream a few nights ago. It was so real, because for once, I had actually managed to remain asleep long enough to get some R.E.M. sleep. I might have slipped into a mild coma, I was so tired. But nonetheless, I dreamed.

THNX_BillyMama

In my dream, Billy woke me up. He was standing next to my bed and talking, completely normally about his day, about the friends he wanted to see at school, about his favorite things to do. He was looking into my eyes and just talking and talking and talking.

I couldn't move or speak myself. In my dream, I was purposely remaining silent, because there was a part of me that knew that any sudden sound or movement could burst this moment like a bubble. I treated him like a baby deer that had wandered into my bedroom. If I said or did anything, he might suddenly remember that he was autistic and stop talking.

This was a better dream than the time I dreamed that Josh Holloway from "Lost" turned up at my front door and told me he was madly in love with me and I had to let him down easy.

In my Billy dream, I woke up suddenly. One of the kids probably made some sound on one of the baby monitors.

By the time I was awake, though, everything was quiet. And I felt like I'd been punched. Half-asleep, I kind of clawed at the air where Billy had been standing in my dream, like I could grab hold of that ghost-Billy and pull him into the real world. My face was wet, but I didn't remember crying.

Then I heard my Billy, the real Billy, over the monitor. He was singing, "If you're happy and you know it" at top volume. And I knew I wouldn't trade him for anything in this world. I wouldn't trade him for an imaginary, perfectly communicating Billy -- as much as I'd like to make his life easier.

He's happy and he knows it.

And so when conversations about a "cure" for autism take place, I'm coming from a different perspective than I did a couple of years ago. If someone handed me a pill and said that I could give it to Billy and his autism would be gone immediately and forever, I'd have a lot of questions. What would happen to his beautiful singing voice? His amazing memory? His fantastic sense of humor? His quirky way of looking at the world? Would he still love to be tickled "On the head, on the feet, on the EYES!!"? Would he still demand "Mama's bed!" every single morning? Would he still wake up singing?

Billy's not the talker that he was in my dream. At least, not yet. But we're getting there. Some days are harder than others -- for all of us. But he is making wonderful progress every single day.

I like to think that dream was a glimpse into the future, that for a few brief seconds, I was given the gift of seeing what we're working toward. Someone somewhere maybe knew that in order to keep hoping and believing and working, I needed to experience what was possible. Maybe it was an early Mother's Day present from my guardian angel.

Who knows? Josh Holloway could knock on my door any minute now. Poor guy; I'll try not to break his heart. But you know, it's only fair to hear him out.

Reader Comments

Comment

Hi Amanda. This post gave me chills... so well written. We all need to be reminded of "the little things" that make our kids special. Thanks for the inspiration! (Oh, and I cracked up at your coffee post on Southern MOMentum the other day!!)

Dream a little dream

I have not had this dream, however, I have many times lapsed into "so this is what typical would be like" when EJ says something spontaneously appropriate and conversant that isn't just commentary. As KD says, "I swear, when he does that, I just want to believe he doesn't have autism".

It is difficult to explain this bittersweet feeling to parents of typical kids. I accept the person EJ is, autism and all, b/c he would not be the same the child without it and who knows, maybe that child would not be as wonderful as he is with it, but that doesn't mean that I also do not wish for a less complicated present and future for him. I don't know of any parent that doesn't want a less complicated present and future for their children; however, because autism presents itself so early, we already know that a more complicated present and future is what we have to contend with. Just because we have accepted and love our children as they are doesn't mean that our subconscious doesn't indulge in a kind of wistfulness about what might have been.

From Amanda Broadfoot

Thank you both for your comments. It means a lot to me.

I'm happy and excited to report that Billy has started regularly speaking in full sentences, of a sort, this week. He likes to start sentences with "Let me ..." as in "Let me turn on that TV" or "Let me give Willow a hug" and these sentences are less "shouty" than the fragments. It used to be everything was a half-sentence and shouted like "Willow a HUG!!" or "Turn on *TV*!!!" if it wasn't a repetition. We are still getting plenty of repetition (I curse the day that "Alexander's Terrible No-Good Very Bad Day" was created) but we're getting more and more real speech. Fingers crossed.

Wow

Wow, I'm not even sure what to comment. That was such a powerful post and I have no background of experience to walk out and share with you. I just.... Wow.

Total 4 comments

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