Thursday, April 30, 2009

Autism awareness month links

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(Scroll down for new posts)

 April is Autism Awareness Month

Welcome! Add links to your autism awareness posts here. You can leave as many as you want, just link directly to the specific posts and leave a comment with a note on your topic(s). Feel to grab the button code from the sidebar to the right. I'll leave this at the top as a sticky post.



Thanks for all you're doing to spread awareness about autism!






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"No myths" Public Service Announcement

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I stumbled onto this public service announcement on the internet recently and thought I'd share it here. I really like the positive message:



This was done by the Autistic Self-Advocacy Network (ASAN), the Dan Marino Foundation, and Kent Creative. For more information, visit http://www.nomyths.org/





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Riding bikes!

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I mentioned here that Cuddlebug and Bearhug have learned to ride their bikes, after much practicing they are really good at it now. Here are some pics (Cuddlebug is wearing a hat):







They've had these bikes for about 3 years (they used to ride with training wheels or just "walk" their bikes), and as you may be able to tell, have outgrown them a bit. We recently got them some bigger bikes but no pics of those yet.





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Wednesday, April 29, 2009

Meltdowns vs. Tantrums

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In my opinion, comparing an autistic/sensory meltdown with a typical tantrum is much like comparing an F5 tornado with a windy day. The differences lie in the intensity, duration, and motivation (or as Barbara more eloquently put it, it's a matter of degree). The motivation is important, because knowing what motivates a behavior is critical to knowing how to respond appropriately.

I'll be the first to admit I'm no expert on raising NT children, so I may be off base here, but based on the well-meaning-but-not-particularly-helpful advice I’ve received over the years, my understanding is that "typical" tantrums are most often motivated by (1) the child’s desire to somehow manipulate the parent into doing something they want, (2) anger over not getting their way, or (3) being tired and cranky. The appropriate parental response (according to conventional "wisdom") includes (1) ignore the tantrum and it will stop, (2) don’t give in to what the child wants, you’ll only encourage this kind of behavior, (3) use "the look" or "the tone" to let them know you mean business and they will stop, (4) punish them for misbehaving.

Those responses may make sense if that is the reason your child is having a tantrum, but all of those responses will likely make things worse if that isn’t the reason. I know, because I’ve tried them all and then some. In contrast, children with autism are not interested in manipulating others – they won’t be watching mom and dad to see how they respond to the meltdown. They don't understand nonverbal cues so the "look" and the "tone" are meaningless. They are not choosing to have a meltdown so punishing them makes no sense.

Quite often, meltdowns are triggered by sensory overload. The sights, sounds, smells, and textures that most of us routinely tune out and aren’t even aware of, bombard them to the point of being painful. I have looked into my sons eyes during a meltdown, trying desperately to figure out how to "make it better" and what I see is anguish, fear, and pain. Another common reason for meltdowns is a transition between activities or a change in the routine. Sure, most kids need a certain amount of structure and routine, and many have difficulty with transitions. But most can be consoled and/or redirected when these things come up. Not necessarily a child with autism. Not only that, these are children who notice the little details, and those details are important to them. The term "routine" takes on a whole new meaning and gets much more granular for children with autism.

It may seem unreasonable that a child insists on parking in a particular place when you go to the store or on doing things in a particular order, but it is because they have attached meaning to those things and it gives them a sense of stability and order. To someone unfamiliar with them, their actions may appear to be manipulative, but that isn't their intent. It's not about making people do what they want. It's about trying to create a little order to help them feel at ease in a world that to them is often an uncomfortable and unpredictable place.

Even the slightest changes to them can feel like their world has been turned upside down. Imagine if you came home one day and your house wasn’t where it should be, if instead there was just an empty lot. You might start to freak out just a little. Well, that is what even small changes feel like to our kids.

So, you might see parents doing some unconventional things to calm their kids. Instead of ignoring the tantrum, they may try to gently hold their kicking, screaming child and softly rock them to help soothe them. Or sometimes any intervention or attempt to help can make things worse, so you may see them just sit down next to their child and wait it out until their child is able to calm down, their only intervention being to clear the area of things that their child could hurt himself on, or moving him to a safe place. You may see them start counting random things because maybe numbers are soothing for their child. You may see them hugging their child tightly (deep pressure) or covering their ears to help them with sensory overload. Or you may see them realize that sensory overload is just too much, so they ditch a cart full of groceries and carry their child outside.

If the parents are able to figure out what triggered the meltdown, they might be in a position to give the child what they want (ok, I didn’t realize you wanted to count the squares on the floor and I wasn’t giving you time to do that, I’ll slow down). This isn’t about reinforcing or not reinforcing a meltdown, it’s about recognizing what is important to your child and trying to accommodate that when possible. Children with autism typically have difficulty communicating effectively, so the meltdown could very well be out of frustration over not being able to let the parents know what they want. Sometimes the meltdown itself is a last resort at communication. In this case, giving them what they want is not going to reinforce "bad" behavior, but rather it will show them that you understand what they wanted, which over time will reinforce their efforts to communicate (hopefully in more effective ways as time goes on).

I'm sharing this because I think the one thing I've wanted most for people to be aware of was to have a better understanding of why my kids react to things the way they do. Why they may run from a room screaming while the other kids are having fun. Why they may drop to the floor in the middle of the grocery store and start rolling around shrieking. Why, in attempt to stay in control and avoid dropping to the floor in a full-blown meltdown, they run up and down the aisles like it's a hundred-yard dash. Why we let them run (b/c it's their coping mechanism and if we didn't things could get much worse in a hurry), although we warn them not to bump into people. Why we take them out in the first place. Aside from the fact they have as much right to be out and about as anyone, it just makes sense that they're never going to learn how to cope with daily life out in the world unless they are exposed to it. That means taking them out.

Of course we try to do everything we can to make sure the stars are properly aligned before setting out. Well-rested... check. In a decent mood... check. Drinks and snacks... check. Toys, books, etc. to keep them occupied... check. Let them know where we're going, any stops along the way, and how long it will take... check. Make sure not to take unfamiliar turns or make unplanned stops... check. Scope the place out ahead of time (when possible) to assess likelihood of sensory overload (and potential escape routes)... check. All the planning in the world doesn't guarantee that everything will go well, but it does increase your odds :). And it takes time. Teaching our kids to cope with sensory overload, teaching them appropriate behavior in public, it's a process. It requires lots of patience, and of course, opportunities to practice (which is why, tempting though it may be sometimes, we can't just stay home all the time).

There was a time when I didn't know if the meltdowns would ever improve. But slowly, over time they have, at least for Cuddlebug and Bearhug. By that time, Little Bitty had started having meltdowns. Nice, huh? But now that we've experienced the light at the end of the tunnel once (well, technically twice), at least now when Bitty's having a rough day I can tell myself we've surved this before and it did eventually get better :).





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SEW & WW: Little Bitty

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It's hard to believe that innocent little face is capable of pulling such a Jekyll and Hyde routine... :)


Click here for more Special Exposure Wednesday, click here, here, and here for more Wordless Wednesday.








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Dealing with aggression

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I'm looking for your suggestions today. We've been dealing with some aggression issues with Bitty lately. I need your opinion on which of these I should choose to protect myself from his onslaughts:



I'm thinking the stormtrooper armor is probably the way to go, it looks like it allows for more flexibility while still offering face protection. Hehe :)

Seriously, though. I've said it before and I'll say it again, I do not remember "punching bag" listed on the job description for "mother." Maybe I missed it somewhere in the fine print. I would've signed up anyway, of course, but I would've been prepared with some better self-defense moves.

At least he offers a 1-second warning first. "Hit!" (whack). Some days, as soon as he hears me walk in the front door, he comes running over with a jubilant, "hit!" and a big grin on his face, only to give a swinging punch to my leg. Sometimes hitting isn't quite enough to get his point across, so he adds "frow!" and throws things at us.

Or his latest (and my personal favorite), he hits me and then holds out his hand, "kiss mah boo-boooo." Sure thing, bud. So sorry you hurt your hand from smacking me(!) Maybe you should kiss MY boo-boo.

I'm not the only one he beats up on, but I seem to be his favorite "target." I try not to pick him up when he's in one of those moods if I can avoid it, because it's rather hard to block someone from smacking you in the face while still holding that someone.

I understand aggression in the context of a meltdown. Been there, done that. With both Bearhug and Cuddlebug, but Bearhug in particular would go into a rage, running around shrieking and grunting, tackling everyone as hard as he could or swinging his arms wildly to hit anyone in his path. Sometimes I worried because he was getting big (he was 5 and big for his age) and I wasn't sure how I would handle his hitting, pushing, and kicking once he got bigger. I remember many times having to put baby Bitty into his crib (which Bitty hated) to keep him out of harm's way while I tried to deal with Bearhug. Mostly that just meant trying to keep him from hurting himself or anyone else until he calmed down. He threw things sometimes too, I remember once he threw his night-light at his bedroom door, shattering it.

Once he calmed down, it was as if nothing had happened. One minute the storm was raging, and in the blink of an eye it was blue skies and birds chirping. He'd go on about his business, seemingly with no recollection of what he'd been doing just a few minutes earlier. Meanwhile I was usually a wreck by that point. As he matured a little more, he started saying, "sorry, Mama" when it was all over. And then he finally stopped having rages like that at all. Thank goodness.

But Little Bitty's aggression is different. Granted, he has those rages sometimes too where he just goes ballistic. But I'm talking about the times he's just hitting and throwing for no apparent reason, and he's not upset or melting down. I think it is at least partly sensory-driven. He seems to crave the intense sensory input he gets from hitting and I know his pain tolerance is higher than most people so he probably doesn't realize that it hurts. (Despite his "kiss mah boo-boo" routine, I think that just came from me asking him to kiss my boo-boo as a way to try to communicate that it hurts when he hits us).

Our latest strategy is to try to replace "hit" with "hug." So when he comes over and says "hit!" and I see that arm swinging, I'll say "hug!" and grab him (quick, before he can swing) for a big, tight squeeze. Our hope is that this will give him the sensory input he needs without hurting anyone. And it also helps that it's hard for him to hit us while he's giving us a hug. He certainly can't reach our faces that way :).

Sometimes it works and sometimes it doesn't. Sometimes we argue. "hit!" "no hit!" "hit!" or "frow!" "no throw" "frow!" (insert flying train here) (duck and cover).

I know we're not the only ones dealing with this. I make jokes about it but in reality it is truly exhausting, both physically and emotionally. Short of actually investing in body armor, I'd love to hear any suggestions y'all have.





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Tuesday, April 28, 2009

Silly Monkey Stories: Puppy tails

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I stumbled onto this in my journal the other day and couldn't stop laughing. I'm glad I try to write these things down (although I know I've missed plenty over the years) because I had completely forgotten about this one.

This was 4 years ago, when Bearhug was 3 1/2. He and Cuddlebug had just started speech therapy, and at the end of each therapy session the therapists would take a few minutes to give dh an update on how it went, what they were working on, and suggestions to continue working on the same things at home.

This particular day, they had been using some pictures of dogs in their session, and while dh and the therapist were talking Bearhug starting acting like a dog (which he liked to do).

Dh asked him, "are you a dog?" and Bearhug barked and nodded. Then dh asked him if he had a tail. At first Bearhug said no, then he said "here my tail, I found it!" and proceeded to start unzipping his pants to show them his "tail."

Of course dh was so embarrassed and told Bearhug, "No!! Zip your pants up, that's not a tail!" I'm pretty sure no one asked Bearhug that question again ;).




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Monday, April 27, 2009

Monday Mumbers #1

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This is my first "Monday Mumbers" post. Visit Good Enough Mama for more Mumbers action.

btw, I love the title of this because it reminds me of how Cuddlebug used to say "mumbers" instead of numbers. :) Bearhug called them "umbers." Whatever you call them, here are mine for today:

14 number of times I felt like bashing my head against a wall this weekend

0 number of times I actually DID bash my head against a wall this weekend (aren’t you proud of me?)

4 number of times I wished we could wear sweats and tennis shoes to church, because I would prefer to be dressed more appropriately for the 3-hour workout / wrestling match that is church with Bitty.

35 number of puzzle pieces that went flying when Bitty got mad

number of feet in the air the puzzle pieces flew

2 number of people who had to duck to avoid being hit by flying puzzle pieces

5 number of times Bitty flipped the lights on and off at church yesterday (a record low for him, woo-hoo!)

1 number of times I got to the light switch before Bitty did (he was unimpressed)

2 number of boys in our family who did great at church yesterday (yay!)

26 number of "rainbows" Bitty made with the water fountain (it does kind of look like a rainbow when you turn it on)


4 number of times I held Bitty up to “lick the rainbow” (because he doesn’t actually drink out of the water fountain, he just sticks his tongue out and jumps back as soon as it touches the water)

5 number of times he stuck his hands in the "rainbow"

2 ounces of water he got on his shirt

0 number of backup shirts I had for him (oops)

2.3 estimated number of miles I walked carrying Bitty around the church building in a circle (ok, I can hear Cuddlebug correcting me in my head, and he would be right, technically it was a rectangle not a circle).

40 approximate number of pounds that Bitty weighs (it's not like he'll actually stand on a scale long enough to get an exact weight)

79 number of pounds Bitty feels like he weighs after carrying him for 10 minutes

87956743 number of pounds Bitty feels like he weighs after carrying him (on and off, mostly on) for 2-3 hours.

17 number of days left in the school year

5 approximate number of weeks of routine-change-induced-angst we have to look forward to (before and after last day of school)

I may have gotten a little carried away there... :)





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Story corner #2: The Good Duck

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Photobucket


Here's a story by Cuddlebug, written when he was 5 years old. I love its simplicity :).

(That last part says "Illustrated" by Cuddlebug)


There's a good duck. He's a good duck.


That's a good duck.


That's really a good duck.


That's really, really a good duck.


That's really, really, really a good duck. The end


This was the back cover :)



For more Magic Marker Monday, visit 5 Minutes for Special Needs.





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Sunday, April 26, 2009

No words

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There are good days, and bad days, and every now and then there are days that just make me want to curl up in a fetal position and hide somewhere.

Yesterday was one of those days.

I don't really have the energy to recount all the details, so suffice it to say the day started out something like this:



Then we thought it had blown over, and made our biggest mistake of the day, thinking we could actually leave the house. We've had a few outings recently without incident (or at least without major incident) so we weren't entirely stupid for thinking we could pull it off. Not stupid, just wrong.

Which led us to this:



Needless to say we got home as quick as we could (and hit every. red. light. grrr).

Finally Bitty wore himself out and fell asleep. I fell asleep with him, exhausted to the point of being numb. Eventually I woke up and mustered the energy to actually get out of bed. I came downstairs to find dh asleep, no doubt also worn out from the ordeal.

Bearhug and Cuddlebug were playing relatively quietly. I cleaned up a bit and then decided to spend a little time catching up on reading blogs while it was fairly peaceful in the house.

I'm glad I did... I had a lot of catching up to do, and I found a lot of uplifting updates, both big and small. Jackson's heart is doing well and he was accepted to the preschool his family wanted for him. Izabel aced her preschool evaluation. Becki pondered the happiness that can come from simple things, as her family prepares to move to their new home. Daniel drew his family! The Farmers celebrated their son's birthday. K brought up some "pointless points" that I didn't think were pointless at all. Meechi answered a question! Krystal made me laugh, as usual :). As did Sticky. Elizabeth's family survived a trip, a wedding, and a number of tornadoes. My brother is back home with his wife after being away for work, and their dog, Noni, celebrated a birthday. Barbara offered a blog carnival of tips. Donna shared a beautiful poem I'd heard long ago but forgotten. The list goes on (and apologies in advance because I can't possibly list everyone I've been reading but I heart you all! These are just some of the updates I happened to read yesterday).

And the one that had tears of joy streaming down my face... Rhema told her mother, "Iiiii luh yew."

As I left the blogs to fix a nutritious meal order pizza for the boys, I felt better. Still physically exhausted, but my soul was uplifted.

(sappy appreciation from a tired but grateful mama ahead -- you have been warned)

I just want to thank everyone. Not just the ones I mentioned above - all of you. Thanks for sharing both the ups and downs, for sharing your suggestions, for the random silliness that can make me laugh even on a day like yesterday. Thanks for letting me know I'm not alone. Just thanks for being you.

:)





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Saturday, April 25, 2009

Our story part 8: Little Bitty's arrival

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I have to backtrack in the timeline a little bit here. A couple of months before Cuddlebug & Bearhug were diagnosed with autism, I became pregnant with Little Bitty. He was born about 2 months after they started therapy.

Little Bitty was a very cheerful and easy-going baby. He wasn’t prone to overstimulation (at least, no more so than the average baby) so we could pretty much take him anywhere. If it was just him, we could make multiple stops in one trip without fear of impending doom.

I was amazed with his ability to communicate through eye contact as a baby. At four or five months, he could tell me he wanted his bottle simply by staring at it. I remember the thrill of how easy it was to read what he was trying to tell me, with very little guesswork involved. And even when I did have to guess, 99% of the time the answer was on the short-list of "most obvious things to try." Hungry, sleepy, needs a diaper change, wants to play, wants his paci... check, check, check. We didn't have to worry about hard-to-guess things like a new picture on the wall making the whole house feel different to him, or the fabric of his onesies driving him crazy.

Like his brothers, he took about a year to actually sleep through the night (we’re 0 for 3 when it comes to sleepers, lol), but unlike his brothers, he was relatively easy to get back to sleep. He woke up, had his midnight (or 3am) snack, and went back to sleep, no fuss. Awesome. At first he was up 2 or 3 times a night, and it slowly tapered off to once or twice.

As he grew, he engaged in interactive play. I remember feeling both excited that he was actually reciprocating my efforts to play, and guilty about being so excited about it. Many of his milestones were not only firsts for him, but firsts for us. No achievement, however "small," went unnoticed or unappreciated. People probably thought we were crazy, bragging about, "he played with a toy... appropriately!" or "check out his eye contact!" LOL.

As he got closer to a year old, he developed a few little quirks (like a fascination with string and licking shiny metal things), but who doesn’t have a few quirks, right? His development overall was right on track, and he was very much a "typical" child.

It was right around 15 months that things began to change, although it was so gradual that it would be several months before we realized what was happening.






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SOOC Saturday: Peach buds

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Looks like we may actually have some peaches growing on our tree this year!



For more SOOC Saturday, visit Slurping Life.





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Monday, April 20, 2009

Our story part 7: Bearhug’s rough start in preschool

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When Bearhug and Cuddlebug started Pre-K, Cuddlebug handled the transition much easier since he had already been going to school there the previous spring. Bearhug, on the other hand, really had difficulty with his new routine.

He had a meltdown every morning when we dropped him off. Since Cuddlebug had been going to school there for a few months already, he thought of it as “Cuddlebug’s school” and didn’t seem to think he was in the right place. It was about two weeks before he actually said anything to that effect, so until then we thought it was just the newness of it (which was part of the problem).

Aside from morning carpool, he was struggling throughout the day with staying focused, transitions, and having to work on any non-preferred activity, and had frequent meltdowns. His teacher reached out to his speech therapist at the school and asked for a meeting with us.

We were hardly surprised, we had suspected that he would have difficulty in a classroom setting with no support. I put together a one-page summary of his strengths and challenges for the teacher in preparation for our meeting (posted here). When we met, it was clear that his teacher was overwhelmed, especially by his meltdowns. “He just drops onto the floor and starts rolling around screaming!” We offered a number of suggestions but she wasn’t exactly receptive. In fact, she seemed a little resentful of the amount of time it would take to help him out, and that the other kids might start demanding “special treatment” too. Feeling a little dejected and disappointed, we realized that while we had gone into the meeting thinking the goal was to brainstorm ideas to help Bearhug adapt and be successful in his preschool class, his teacher’s goal had been to lay out her case for why he didn’t belong in her class. She wanted him moved to a special needs class full time.

We requested a re-evaluation to see if he could be found eligible for some support now that he was clearly having difficulty in school as a result of his developmental delays. The assessment team observed him in class and scheduled another eligibility meeting. At that point, he was found eligible for services beyond just speech. They recommended putting him into a smaller, special needs class twice a week (similar to Cuddlebug’s placement) and having a resource teacher to help him in his regular pre-k class the other days. The resource teacher would be able to give him the one-on-one help that his teacher wasn’t able to, and could also offer suggestions to his teacher.

Once he had the support he needed, Bearhug thrived at school. In fact, by the end of the school year, he had almost no meltdowns at school anymore, and the teacher who had initially tried to get him out of her class commented that he was one of her best students!

Both he and Cuddlebug had a great year, and when it was time to set up placement for kindergarten, the school recommended putting them in an ASD resource program at a nearby school (not our home school). They would be in a regular-ed class 5 days a week, with pullout during the day as needed as well as resource support in their regular class. I was nervous about having in the regular ed class every day, but we felt they were ready to give it a try.






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Our story part 6: School evaluations

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As I mentioned in an earlier part of our story, Bearhug & Cuddlebug were 3 years old when they were diagnosed, so they were too old to be eligible for early intervention. Instead, we were referred to the school district for special needs services.

The school evaluations take about 3 hours, so we scheduled them for different days. As before, Cuddlebug went first. I think it was about 2 weeks after that when we had his eligibility meeting. His estimated level of play was 24-26 months. He was 3 yrs, 7 mos old (43 months) at the time, so that was about a year and a half behind. His cognitive, language, personal-social, adaptive, and fine motor skills all tested in the 25-32 month range, all significantly delayed relative to where he should have been. They noted that his low cognitive score might well be due to his language delays and not actually an indication of cognitive disability (now we know he has no cognitive issues). With regard to his speech, his intelligibility was estimated at about 70% overall, but they noted that with totally spontaneous speech, without any context clues, he was often impossible to understand (partly due to poor pronunciation combined with a “mushy-mouth” sound, and partly due to unusual word choice).

They found him eligible for special needs preschool and recommended the 2x/week class. He was also eligible for speech through the school, which would be coordinated with his teacher and given during the school day. The school staff guided us through the process of developing his IEP. We set up his private speech and OT for the days he was not in school.

Bearhug’s evaluation was soon after. His test results indicated mild delays, with the most significant area of delay being his language skills. His estimated level of play was 28-30 months, well over a year behind but that was felt to be a reflective of his language delays. Overall, they determined that his delays were not significant enough to be eligible for special needs preschool. He was eligible for speech therapy through the school though, so we set up an IEP for that, in addition to his private speech and OT. We expressed some concerns about whether his performance in a one-on-one evaluation was really indicative of how he would do in a larger classroom setting given his sensory issues, but there was no way they could actually evaluate that until he was in a classroom setting.

During the time that Cuddlebug was in school, we enrolled Bearhug in a gymnastics class and a t-ball/soccer class. He really liked the gymnastics. I think it helped that there were only two students, him and one other little boy the same age. They got along great, and they both got plenty of individual attention with the teacher. He didn’t like the t-ball/soccer class so much. It was a bigger group, about 8 or 9 kids, and there was a fair amount of time just standing around.

We saw significant progress from both boys once we got them started in therapy, especially with Cuddlebug since he had the benefit of his preschool experience supporting his developmental goals.

That fall, we enrolled both boys in Pre-K, which was at the same school as the special needs classes. Cuddlebug would continue to attend his special needs class twice a week, and would attend a regular pre-K class the rest of the week. Bearhug would be in a regular pre-K class all week, with pull out twice a week for speech.

We tried to give his teacher a heads up about our concerns, but she kind of blew us off. I’m sure she meets a lot of nervous parents at the beginning of the school year. “He’ll be fine,” she assured us. Not so much...






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Saturday, April 18, 2009

Our story part 5: Thoughts on Bearhug & Cuddlebug’s diagnosis

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I should pause here to share some of my thoughts on the diagnosis of our twins. While it was a bit unnerving to actually hear a professional say the words, it was an enormous relief to finally have an explanation. I wrote a little about it (metaphorically) here.

It really was like having someone hand me a flashlight after I’d been wandering and stumbling in the dark for a very long time. It was the end of a long and confusing journey of looking for answers in all the wrong places. Before the diagnosis, I had thought that their speech would eventually catch up, but I had spent countless hours reading so-called “parenting experts” for help on how to handle the meltdowns. Unfortunately, their suggestions were such epic failures for us I decided they must be dismally out of touch. I got to be pretty cynical of anyone’s parenting advice. I wondered if I was a horrible parent, or if my kids were just different. Then I wondered if I was a horrible parent for wondering if my kids were different…

I share this to give you a sense of my frame of mind at the time. I was deeply saddened when I was told that autism is a lifelong disability with no known cure. The thought of what we had ahead of us, not knowing which therapies they might respond to or how long it might take to see progress was overwhelming. But I also felt gratitude. I was grateful to finally have an ANSWER. I was relieved that it was not a life-threatening condition, and that although there is no known cure, there are therapies available and I was optimistic that those would be helpful.

I started reading autism parenting books, and it was such a difference from reading the other parenting books. Instead of thinking, “what PLANET are these people living on?!” as I read, I kept thinking, “Wow, that is EXACTLY what my boys do!” I sought out autism moms online. It was amazing to read their experiences. For the first time in a long time, I no longer felt so alone in my experiences.

At the same time though, with increased knowledge came a lot of guilt, particularly as I learned about sensory issues. All that time I’d had no idea what my kids were dealing with on a daily basis. No wonder they got so frustrated!

And so we began our journey to learn all we could about autism & sensory integration disorder, to see our boys’ behavior through a lens of new understanding, and to start figuring out how to help them overcome their challenges and achieve their potential. We finally had some idea of what direction we should be going and could stop wandering in aimless circles looking for answers.





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Bitty's testing me (funny)

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We're about to head out for a while, but this was too funny not to share real quick first.

Bitty was acting like he needed to use the restroom, so I asked him, "Is it potty time?"

"No"

"Are you sure?"

[he ignores me]

Not 10 seconds later, he was stripping down in the bathroom (because that's what he does) so I asked him again, "Do you need to go potty?"

To which he answered, "Cor-RET!"

LOL... I didn't realize it was a test, but I'm glad I got the right answer :).





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Our story part 4: Cuddlebug & Bearhug's Diagnosis

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I scheduled two separate appointments with the pediatric neurologist. Cuddlebug was up first, as he seemed to have more significant delays. The doctor asked a ton of questions, and then started trying to talk to Cuddlebug. I was used to “translating” (or at least trying to) so it was hard for me to stay quiet and just let him interact with Cuddlebug. For a while Cuddlebug just ignored him, but then he brought out a Spiderman finger puppet. Cuddlebug knew nothing about Spiderman, but he was intrigued by the finger puppet. I remember the doctor asking him, “do you like Spiderman?” over and over. At first Cuddlebug just smiled, then he repeated back “Spi-mah.”

A bit confused at where this was going, I finally told the doctor, “that means ‘yes.’” He asked me, “does he ever actually answer yes / no questions?” After thinking about it, I realized that he didn’t. In the absence of actual yes/no answers, we had just taken his smiles and echoing what we said as an affirmative response (and his ignoring us as a negative response). We hadn’t even realized we were doing that, or that his repeating things back could be just repeating. Suddenly, some of his meltdowns started to make sense (for example, when we’d ask, “do you want milk or juice?” “Juice.” So we’d get him juice and he’d drop to the floor screaming because it’s not what he wanted.)

The doctor continued evaluating him, and taking notes. Finally he told me he thought Cuddlebug had autism. After all our research, I wasn’t surprised, but it still seemed strange to hear someone actually say it. He referred us to a developmental pediatrician who specialized in autism, and gave me referrals to have him evaluated for speech and occupational therapy. He also referred us to our school district to have him evaluated for special needs preschool services (having just turned 3, both of our boys were too old for early intervention services). He also scheduled a blood test (to check for Fragile X or any other issues that could be identified that way) and an EEG (to check for seizures). Having to hold him down to take blood was not fun. The EEG was a nightmare. There was supposed to be two parts – one awake and one with him resting or, preferably, sleeping, but he never settled down enough to do the “resting” one. Both the blood work and the EEG results came back “normal.”

Bearhug’s appointment was similar, although the doctor noted that his symptoms were milder and that he was “more interactive” that his brother. True enough, although we would later come to realize that while his classic autism symptoms were less severe, his sensory issues were more severe than his brother’s.

We found out that there were waiting lists for everything, and more evaluations required for everything too. For speech, they needed a hearing test before they could even be evaluated, so we scheduled that. Another day of mayhem… Cuddlebug wasn’t particularly cooperative but Bearhug went absolutely ballistic when we tried to get him into the little booth where they do part of the hearing test. They both loved running up and down the little ramp that led to the booth though (sigh).

It took several months, but we finally got them in for speech and OT evaluations, and for evaluations with the school district.






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Wednesday, April 15, 2009

Wow...

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That's all I can say -- wow, this kid is wicked-smart.

I took today off but ended up working remotely from home all morning, Bearhug is here too b/c he's home sick with a stomach bug :(.

He asked me, "how many days have I been alive?"

I had no idea and told him I'd look it up (why do the math in my head when there are online tools to tell us these kinds of things?). While I was doing that, he started counting / calculating in his head (well, he was holding his fingers up but he's obviously more than 10 days old so it's not like he could really count on his fingers).

His first guesstimate - within about 20 seconds - was 2,100 days (not a bad estimate - 7 yrs old times a rounded 300 days / yr gets you 2,100 days).

I found the answer online but held off telling him as I could see he was still calculating, updating his estimate. About another 40 seconds, and he said, "2,500." So now he's apparently adding on extra days for the fact that there's actually 365 days in a year (not counting leap year) and that he's actually older than 7 (getting close to 8 yrs old at this point).

I told him he was pretty close, and was about to tell him the answer but could see him still calculating in his head so I waiting. About another minute passed and he gave me his final estimate, "2,635 days."

Wow - that is pretty darn close, the actual answer (down to the exact day) is 2,871 days. If someone had asked me at age 7 how many days old I was (although actually it was his question, not mine) I would have given them a blank stare...

Just thought I'd share that little "how cool is that" moment :).

btw, if you're curious how many days (or hours, or seconds) old you are, you can find out here.





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Our story part 3: The final straw

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During the time leading up to their third birthday, dh and I became more and more frustrated and confused by Cuddlebug and Bearhug’s behavior, increasingly unusual responses to things, and continued lack of communication. Every now and then things would get so bad that we’d have “the talk” again. The one where we tried to put our concerns into words, shared our confusion at “why don’t we see other kids acting like this?” and dared to wonder aloud whether something was wrong. Of course we didn’t want to believe that, and typically after one of these conversations, they’d end up having a few “good days” in a row and we’d conclude that we were being paranoid and that everything was fine. Until the next time, anyway.

At their 3-year checkup, we brought up our concerns (again) to our pediatrician. We couldn’t articulate them all that well… aside from the speech delays and meltdowns, we couldn’t quite put our finger on what was wrong. It was more a sense of something just not being quite right. Despite the fact that the boys were pinging off the walls throughout the checkup (as usual) and that the nurse actually advised us not to bring them both in at the same time anymore (wimp), the doctor took a “let’s see how they’re doing in six months” approach. Up to that point he’d been telling us that they were just on the “slower end of normal” and that they’d catch up. We were starting to feel like we were past the point of “wait and see.” Surely despite being preemies they should be catching up by now, and their meltdowns seemed out of all proportion to anything we saw from other kids.

(Note: fwiw, we changed pediatricians soon after this)

Not long after that was the “incident.” It was an outing to Toys’R’Us, and as usual the boys were playing at the train table. Another little boy was playing with them, and he kept trying to grab a train from Cuddlebug. Cuddlebug kept turning away from him, but the boy was persistent and I guess Cuddlebug decided he’d had enough. He made a little fist and popped the other boy in the face. The boy seemed more stunned than hurt, but naturally he started crying. Cuddlebug’s response was, well, disturbing – he showed absolutely no concern for the boy, no reaction at all to his crying. We immediately jumped in to apologize to the little boy and his dad, and tried to get Cuddlebug to say sorry for the other boy’s “boo-boo.” He completely ignored us. He had gone back about his business playing with trains as if nothing had happened. Given his lack of response, we felt the only thing we could do was take him home. He went ballistic and we had to carry him, kicking and screaming, out to the car. Thank goodness Bearhug was being pretty cooperative that day.

After that, there was no more denying that something was wrong. I started doing research online and the thought came to me to look up autism. It seemed a strange thought, since I knew almost nothing about autism, but I did and was stunned at what I found – a laundry list description that fit our concerns about both Cuddlebug and Bearhug to a tee. So many of the things we hadn’t quite been able to put our finger on or put into words were laid out plainly in the various descriptions of autism signs and symptoms.

I called our pediatrician’s office, told them I thought our sons might have autism and that I wanted to have them evaluated by a specialist. He seemed noncommittal when I told him what I had found, but he gave me a referral to a pediatric neurologist. Not that he had a choice – now that I had evidence that we weren’t crazy, I would have camped out on his doorstep if I had to.






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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.

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