Handsome x3

We got the boys some new dress clothes for church :).

When Cuddlebug and Bearhug were little, we had a hard time getting them to wear anything other than their usual day-to-day clothes, largely due to their sensory issues. Church was enough of a battle without adding to it by forcing them to wear uncomfortable clothes - and so we have always let them wear polo shirts and khaki pants to church (with the exception of their baptism day).

But, as they are quickly approaching an age where they will be more young men than little boys, we thought it was time (again) to try having them wear dress shirts and ties. Actually tucked in and everything. With a belt (so that's what those loops are for!). And dress shoes. And we figured as long as we're getting our big boys some dress clothes, we'd do the same for Bitty.

You may or may not be surprised to learn that nearly all of the rampant complaining that day was NOT from Mr. Bitty. But by the time we left church both Cuddlebug and Bearhug had decided it wasn't SO bad after all.

"Behind the scenes" of how I managed to get a picture of actual smiles ;). Doesn't matter what they're wearing, these two never pass up a chance for a play-fight. This one is actually relatively mild :).

Peter Sam (the engine, in his best "most interesting man" voice) says, "I don't always go to church, but when I do, I go with Bitty." :)

Taken outside before church... I tried to get one of all three boys together, but as you can see that didn't work out.

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Redirect... FAIL

We were at church Sunday and Bitty was wired, running up and down the halls with the occasional screech. He's been really having a hard time at church lately, but that's another post.

I took him for a walk and he was finally starting to settle down but I sensed he was on edge and would soon take off running again so I tried to distract him with the paintings on the wall.

"Who is that a picture of?" "What are they doing in the picture?" etc.

He wasn't really interested but as we passed the bulletin board I tried again.

"What does that say?"

He shouted, "I KNOW DA SCWIPTURES ARE TRUE!!!"

So much for trying to distract him *quietly* (sigh).

"Ssshhhhh... not so loud, angel."

He looked at me and pointed to the exclamation point at the end of the phrase on the board as he patiently explained, "Dat means WOUD or excited."

Oh... the exclamation point means loud or excited... of course (smiling now and stifling a laugh). He's learned all about punctuation at school.

"How about if we try an excited whisper?"

He did his best excited "whisper" which was not really a whisper but wasn't an ear-piercing yell either.

"I know da scwiptures are TRUE!"

...

Note to self: next time you try to distract Bitty with reading something, make sure there are no exclamation marks in sight.

!!

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Book review: (dis)Abilities and the Gospel

I’ve written a few posts before about some of our challenges at church with our boys over the years. We’ve spent many years wandering the halls with one or more of our boys and often struggled to feel like a part of our church community. We’ve found that people are often willing to help, they just need some input from us on how to do so. We do our best, but we don’t have all the answers either.

While bookstores and libraries abound with books about the autism spectrum, special education, therapies, and other related topics, we were pretty much on our own when it came to guidance for helping our boys have positive experiences and successful interactions at church.

The new book, “(dis)Abilities and the Gospel: How to bring people with special needs closer to Christ” by Danyelle Ferguson and Lynn Parsons, is sure to be a helpful resource to parents and church leaders alike. I am excited for the opportunity to review it! Seriously, this is the book we needed back when Cuddlebug and Bearhug were first dx’d and we didn’t have a clue what we were doing, or when Bitty was dx’d and we were struggling to figure out how to meet the individual needs of three young boys on the autism spectrum (amid just trying to get through the day). I’m grateful that now it’s finally here :).

The first part of the book is geared toward church leaders and teachers who work with children with special needs, with topics including what to expect in various scenarios, specific teaching strategies, setting goals, and recognizing progress even when it comes in small steps or takes long stretches of time. Many of the strategies will be helpful for all children, not only those with special needs. Some of the ideas will already be familiar to parents and other family members, but will likely be helpful to teachers and leaders who don’t have a family member with special needs. Other ideas I was excited to see were new to me, even being a relatively experienced autism / SPD mom. :)

The second part of the book covers specific topics broken down by age group – from young children to adults – and seemed (to me at least) to be geared toward both parents and teachers. The third part is focused on families and offers suggestions for surviving church, teaching basic gospel principles such as prayer and scripture reading, family home evenings (family night), and strengthening family relationships, including marriage.

Throughout the book are real-life experiences which not only illustrate the various topics but also reinforce the message that the reader is not alone in their experiences. Discussion of challenges is honest and accompanied by encouragement. The tone throughout is positive and uplifting, and focused on approaching each individual as a unique and precious child of God.

While the book includes many topics that specifically relate to the LDS faith, I think the teaching strategies, church-survival ideas and many other suggestions will be helpful to those of any faith, and many can be applied beyond the church setting as well.

All in all, I definitely recommend this book to those who teach individuals with special needs in a church or community setting as well as to parents and family members looking for ideas on how to help their loved ones have positive spiritual experiences that will help them feel the love of Christ and bring them closer to Him.

~~~~~~~~~~~~~~~~~

Contest:

Enter to win a $25 Amazon gift card and a free 20 minute consultation with Danyelle! You can ask her about parenting, church surivival, adapting lessons - or even about writing and publishing. Two names will be drawn on July 22nd. The drawing will include 1 winner of a $25 Amazon gift card and free consultation; and a second winner of a free consultation. Winners will be announced on www.QueenOfTheClan.com There are many ways to enter. You must leave a comment on the reviewer’s blog letting us know what you’ve done. Please include your email address.

1 Point Each:
- Leave a thoughtful comment about the blogger’s review.
- Add the book to your “to-read” list on GoodReads
- Follow the reviewer’s blog
- Follow Danyelle’s blog
- Follow Lynn’s blog
- Follow Danyelle on FB
- Follow Lynn on FB
- Follow Danyelle on Twitter @DanyelleTweets
- Follow Lynn on Twitter @ParsonsLynn

2 Points Each:
- Tell your friends about (dis)Abilities and the Gospel on Facebook with a person links to Danyelle Ferguson & Lynn Parsons
- Tell your friends about (dis)Abilities and the Gospel on Twitter with links to @DanyelleTweets

5 Points:
- Interview Danyelle or Lynn for your blog or write a blog post about why you’re excited about (dis)Abilities and the Gospel. Be sure to leave a direct link to your post in your comment so we can visit and say hello!


Purchase & Review Links:
Amazon.com
Barnes & Noble
Deseret Book
GoodReads


Book Blurb & Endorsements:
Each day, parents and church leaders struggle to teach individuals with special needs. Using helpful information, real-life stories, and a touch of humor, (dis)Abilities and the Gospel provides ways for you to effectively teach people of all ages with autism, Down syndrome, bipolar disorder, memory loss, and other disabilities.

Inside this useful guide, you’ll find
• Guidance for building strong family relationships
• Steps to teaching prayer and scripture study
• Practical and creative teaching tips
• Programs to help with transitions, communication barriers, and behaviors
• Techniques to help others feel welcome and valued

Find the answers you need and overcome the challenges of teaching the gospel. (dis)Abilities and the Gospel will help you develop each person’s ability to learn and grow as you build peace in your home or classroom.

(dis)Abilities and the Gospel is a resource that may be read, reread, and used many times. . . . The authors have beautifully woven the frustrations that so many people have experienced into an action-living plan to help children with special needs.
—Lloyd Kinnison, PhD. Texas Woman’s University, Special Education Department

This book is an unexpected and very welcome gift to the community of churches and their leaders. It addresses so many of the problems that children, young adults, and adults with disabilities face in church activities.
—Brenda Winegar, Early Interventionist/Cofounder, Kids on the Move


About the Authors:

Danyelle’s Info:
Website: http://www.DanyelleFerguson.com
Blog: http://www.QueenOfTheClan.com



Lynn’s Info:
Website: http://www.lynndparsons.com/
Blog: http://lynndeniseparsons.blogspot.com/


~~~~~~~~~~~~~~~~~
(Full disclosure: I was provided a free copy of the book for purposes of writing the review, but was not compensated in any way for this review)

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Still here... and an update

I feel like I've kind of gone AWOL from the blogosphere for a couple of weeks, but I wanted to say thank you for your kind words, suggestions, and encouragement in response to my last post.

Bearhug is still struggling and we have no idea why. It feels like we are in new territory here... at first I thought it was a result of sensory overload / stress but now I'm thinking it may be more than that.

Whatever it is, it has really escalated in the last few weeks. We're seeing a lot of anger, rage would be a better description really. Aside from that he seems kind of sullen, even sad. I spoke with his resource teacher and the parapros that work with her, they're seeing similar things at school. He had a pretty intense outburst at school this past week.

Sundays are the worst. Two weeks in a row he took off running at church and went missing. We found him hiding in the bathroom both times, but talk about stress! The first time I was fighting panic, not sure if he was even still in the building or not. Several people helped me look (dh was teaching a class and didn't know about all this until after Bearhug was found), and he finally turned up in the bathroom. He had his feet up so no one would see him and wasn't answering when we called out to him, but the second time someone checked, they spotted his shirt through the crack in the stall (Bearhug later said he hadn't had time to cover up the cracks with toilet paper... ugh).

The second time at least we knew to check the bathrooms and sure enough that's where he was again. Once he was found, he refused to come out and instead stayed in there screaming at the top of his lungs. We've tried to accommodate him by taking turns taking him outside for walks, but it doesn't seem to be enough.

His teacher said he has made comments about feeling worthless, and since then he has made a couple of similar comments at home. She suspected it might be the influence of the "Diary of a Wimpy Kid" books, which he really seems to be taking way too seriously. He admitted that sometimes those books make him feel bad - and although I don't really think the books are the cause of the problem it's possible they were making it worse, so we took them away for now. They're supposed to be funny (I read the first one and actually thought it was cute... but what do I know?).

Some of his behavior seems to have an attention-seeking element to it (he'll do something he KNOWS he's not supposed to do and look around to see if anyone notices), but giving him extra attention (not rewarding the bad behavior, but going the extra mile to give him praise, etc. when he's doing good) doesn't really seem to be helping. In fact, today when I told him I was proud of him for his grades at school this week (after looking through his weekly folder), he got upset with me.

Yesterday, he really scared us when he took off running and hid in the neighborhood. It's the first time he's done anything like that before. I mean, we had to watch him like a hawk when he was younger because he would run off but it was different... he was usually intrigued by something or he just wanted to run, he wasn't necessarily trying to get away from us. Yesterday, that's precisely what he was doing, and it was dark outside and I'm not sure even now he really understands how dangerous it was to do that.

He was coming home from playing with his friends (two doors down across the street) and I asked him if he was hungry. Dh told him I had ordered pizza and asked if he wanted some. He lunged at dh and then took off running past our house. I heard him banging on the back door and went to open it, and by the time I got the door open he was nowhere to be seen. I thought he was just messing with me and went back to the front door, but dh (who was across the street) said he hadn't come back around and thought he'd gone into the house. At that point we had no idea where he was, but it was getting dark. There's a bunch of trees behind our house and I was worried he'd gone in there. Dh grabbed a flashlight and went to look for him while I stayed with Cuddlebug and Bitty. I watched for him out the door. The boys he'd been playing with helped look for him, and dh was about to round up the neighbors to help too, when they spotted him. He'd been hiding behind one of the houses nearby :(. He was clearly upset, resisting coming into the house and trying to run away again. When he came in, he ran up the stairs, hid under his blanket, and was crying, refusing to talk to us. We finally convinced him to eat dinner, and then he seemed to feel a little better, but a while later he was upset again and tried to run outside again. Luckily he wasn't trying too hard, and I was able to keep him inside without a huge blowout.

A while after that, he was complaining of nausea and dizziness and wanted all the lights out. He said he'd been "exercising" trying to get "those things in your stomach, I can't remember what they're called," (turns out he was talking about "abs") pretty much the entire time he'd been playing that day. I think he overdid it and actually made himself sick. It almost seemed like a migraine but he didn't say his head hurt other than feeling dizzy ("it feels like I'm moving but I'm not").

The only answer we could get from him - then and even today - was that he didn't like the questions we asked him. What horrifying questions did we dare to ask? The ones about "are you hungry" and "do you want some of the pizza your mom ordered?" Maybe he wasn't feeling well from overdoing it and something that simple was all it took to set him off. I don't know.

I am really at a loss here. It is heartbreaking to see him going through this and not knowing what "this" is, or how to help him. The bad days are exhausting - emotionally and physically - and the good days it feels like we are walking on eggshells trying to keep the peace. Every time he has a couple of good days in a row I start thinking maybe things are looking up only to get socked in the gut with a day like yesterday.

Someone mentioned hormones, and it sounds strange but I've done some reading and apparently pre-puberty hormone changes can have a significant impact on children with autism, as early as 7-9 yrs old. Maybe that's at least part of it, I honestly don't know. He is having mood swings like we haven't seen before.

He was cranky today... but this evening he seemed to be feeling a little better. He let me sit with him and we read some books together. It was nice :).

We have a checkup scheduled for him and Cuddlebug a week from tomorrow, maybe his doctor will have some ideas. His resource teacher has been really helpful, she is awesome. She's been working with him since Kindergarten so she knows this is not like him.

I'm open for suggestions... and if you're inclined to pray, a little extra prayer for Bearhug would be greatly appreciated.





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Sensory stuff

So I just wrote a long, rambling post (in draft mode) trying to sort out my thoughts about the sensory challenges we've been having lately, mostly with Bearhug. When it comes to classic autism, his is the mildest of my three boys (with Bitty the most affected and Cuddlebug somewhere in the middle), but Bearhug's sensory challenges are the most severe of my three. He is really struggling lately - at home, school, even church. It seems to be a combination of overstimulation, various changes in the routine, difficulty focusing, and somehow just general out-of-sync-ness (to borrow the term from this book).

There are a few possible "triggers" but it's hard to tell if those are actual causes, effects, or just exacerbating what would still be there regardless. I don't think it is just one thing, it seems more like one thing after another after another... and when he's overwhelmed his ability to effectively communicate is impacted, so we're trying to piece together what clues he is able to give us. We're doing our best to help, and to be patient in the process, but I have to admit to feeling a bit at a loss.

Today was a rough day.

I was in this frustrated state of mind (and recovering from a migraine which I think is probably directly related to today's misadventures) when I read this post from Patty at Pancakes Gone Awry... if you have a child with sensory issues it's an encouraging read. I can so relate to what she describes with her son, and she's right, it does get better. Reading her post reminded me of just how far each of the boys has come so far. And not only that, if they've made that much progress up to this point, I have to believe that although we may be at a bit of a rough patch right now, more progress is yet to come and we will find a way to help them work through their current challenges.






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Four-giveness

A few weeks ago (the week that Bitty did great in church), his class learned about forgiveness. At the end of the lesson, his teacher had each of the children practice saying the word to help them remember what they had learned about.

She broke it down since it's kind of a big word:

"For-"

"-giveness"

The next week, I wondered if he still remembered so I asked him what he learned last week. He needed a little prompting but then he repeated back:

"for-gibness"

"Good job!" I told him.

Then, with a smile, he continued on:

"Fie-gibness... sih-gibness... sebuh-gibness..."

"Nie-gibness..."

"Elebuh-gibness..."

I couldn't help but laugh, he was counting. I guess it makes sense, if you're thinking the "for" at the beginning is actually a "four," lol. I wonder if he's expecting a follow-up lesson on "twelve-giveness"?





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Full of surprises!

So Sunday we had a rough day at church. Without going into all the gory details, it involved one major meltdown, a couple of smaller ones, a lot of over-stimulation, and a certain little boy almost getting stepped on a couple of times while rolling on the floor.

We also learned that while the seat-belt clip does in fact keep Bitty from unhooking his seat belt while driving, it does nothing to prevent him from squirming his way out of the seat belt altogether. Sigh. We had to pull over so I could jump into the back to keep him in his seat. Oh, and I'm really, really, thankful for child safety locks on car doors.

Anyway, on a brighter note, we had a few minutes at the beginning of primary where Bitty was actually sitting in his chair and semi-paying attention. Every week they have one of the kids read a scripture and then everyone repeats it along with them.

Well, Bitty heard everyone saying the words together so he tried to join in, only I noticed he wasn’t saying the same words. I listened closely and heard "Ameh-ca... un nay-shuh... iddizibul..."

I thought to myself, is that what I think it is?

I listened some more... "justih fo’ aww"

Sure enough, he was saying the Pledge of Allegiance. :) I don’t think anyone else caught it, but I was beaming – he was doing his best to participate and wow, he actually knows the entire Pledge of Allegiance!

I got him to say it again at home for dh and I took a video. He pronounces things in his own way, but I think he's got some pretty good approximations for some of those big words, no? Here it is:









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Bitty and me, and some updates

Bitty loves to be carried (in fact, he insists on it by jumping in front of me with his arms up so I can't walk). He's getting so big, but I can still carry him for a little while at least so I prompt him to ask, "up pweez" and then I carry him until my back needs a break.

He reminds me of Cuddlebug when he was younger (hence the nickname...), he was a cuddly little koala bear too. As you can see I'm not so good at trying to take pictures in the mirror, couldn't quite get the right angle but this was the best one. Well, this was the only one where you can actually see us...

Some quick updates:

Bitty did pretty good at church yesterday. He didn't participate much this time, but he did go to his class after some protest. He stayed on my lap with his sippy most of the time. He was pretty tired this weekend, all of the boys were. They are still adjusting to being back in school.

Cuddlebug was asked to give a talk in primary yesterday, and Bearhug was asked to read the scripture. They both did great, despite a fair amount of grumbling beforehand. They were so excited about it last week (because the kids get their assignments in the form of "mail" and they were excited to get mail) but not so thrilled yesterday.

All in all it was a good day.

There was some crankiness this morning about going back to school from Bearhug and Bitty... but dh said they were both fine by the time they got to school.

Tomorrow, Cuddlebug and Bearhug have their first Cub Scout meeting. Bearhug is excited, and Cuddlebug is worried it will cut into his Pokemon time (sigh). He would stay home and play Pokemon 24/7 if we let him. We told him we won't force him to keep going if he doesn't like it but he does have to give it at least a few weeks (they only meet once a week) before he decides he doesn't like it. We also reminded him that it won't affect his Pokemon time because he and Bearhug are already limited to 1 hour of game time per day on school days - assuming they have that much time after any homework is done. Fridays are the exception, they get "DS night" and can stay up late playing games.





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HE DID IT!!!!! (Autism at church, part 3)

Sometimes progress comes in baby steps, sometimes it comes with as many steps backward as forward, sometimes it pauses for a long plateau.

And every now and then...



...progress comes in giant leaps! Or, maybe it would be more accurate to say a culmination of baby steps that come together all of a sudden in a way that feels like a giant leap!

But however you word it, we had just such a moment last Sunday. And it was nothing short of a miracle as far as I'm concerned.

For sharing time, we went back to sitting in the back of the room. My head was pounding and I wasn't up for the chasing and wrestling that I knew would happen if we tried to sit with his class. He did pretty good sitting with me in the back. When it came time to go to his class, I didn't think he'd go. He was already protesting, "No fih-teee" (his classroom is room #15). I shrugged and figured, let's try anyway.

I was pleasantly surprised when he grudgingly joined the other kids in room #15. He sat on my lap with his sippy cup, not really paying attention or engaged in what was going on, but that was the first time we'd made it that far in a long time so I was happy :). Little did I know what else he had in store!

When his teacher pulled out some pictures to look at, I gently nudged him, "Hey, Bitty, can you see the picture? What is that?" I fully expected his usual non-response, but he surprised me again when he actually looked up at the picture.

His teacher recognized his effort and started asking him questions. He answered. He went back to his sippy as the other kids answered questions about the picture. But when the next picture came out, and the next, he slowly got up from my lap and sat in a chair next to the other children. He was paying attention, and he continued to answer questions.

He went on like that through the rest of the lesson - he was engaged, he was calm and well-behaved. He listened and he participated. I could see that his teacher was really excited with this development too.

By the end of class, I was fighting back tears. Countless months of struggle, and then BAM, just like that! Something clicked and he was no longer isolated in the hallways or even just in the room. Not once did he go for the light switch, or the door; not once did he have a fit. He was part of the class, he learned something, and he was happy! I just can't even describe how exciting this was and still is!

Of course I had to call my parents right away after church to share the exciting news, but I had lost it and was bawling by the time my mom picked up so it took a minute to actually get the words out.

"HE DID IT!!!!!"

Once she realized what I was saying, I think she was crying too. Bitty was totally nonchalant about the whole thing, but it was a huge deal to me.

It almost didn't happen. That morning, I had considered staying home with Bitty while dh took Cuddlebug and Bearhug to church (he teaches a class so he wouldn't be able to sit with Bitty if he took him). I'd had a headache that lasted through the night before and I wasn't sure I was up to a 3-hr "workout" with Bitty. But you know how you just get those feelings sometimes, and that morning it was telling me that Bitty and I needed to be at church. I'm glad I listened.

I am feeling cautiously optimistic about church today. Hopefully Bitty will have another great day like last week. I'm sure we still have some ups and downs ahead of us, but hopefully we have turned a corner...






~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Autism at church: part 1
Autism at church part 2: Bitty wears. me. out.




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Autism at church part 2: Bitty wears. me. out.

You may recall I posted recently about some of the struggles we've had at church over the years. Just as things started to "click" for Cuddlebug and Bearhug at church, Little Bitty started to really struggle. At the time, he was still attending the nursery, for children 18 mos to 3. More often than not, he went into meltdown mode just at the sight of his classroom door, and even if I went in along with him it made no difference. It became rare for him to actually go in and rarer still for him to go in by himself (or allow me to leave without hysterics - here's just one example from last year). The two of us spent most of our Sundays roaming the hallways at church, making "rainbows" at the water fountain, counting trees in the parking lot, and generally trying to avoid light switches and doors (the objects of intense fascination for Bitty).

Every January, the children who turned 3 the prior year "graduate" from nursery to primary (children's Sunday School). The primary kids have about an hour of "sharing time" where they meet as a group to sing songs and have a short group activity. Then they break up into classes based on age for the last hour. I was dreading it. It took years for Bearhug and Cuddlebug to finally adapt to the whole primary routine without frequent breaks, attempts to escape, or general disruptiveness. I wasn't exactly looking forward to a repeat of that experience (granted, with one instead of two this time - gotta look at the bright side!).

Bitty did about as well as could be expected, considering he really didn't understand what was going on, doesn't like singing, and quickly became obsessed with the microphone at the front of the room. He was forever trying to run up and talk into the microphone, which of course is a pretty obvious disruption. When I took him to the back of the room, he found the light switches and had a ton of fun racing back and forth from one to the other trying to flip them before I could stop him. (Fun for him, not so fun for me). When I tried to take him out of the room he noticed the doors and that would spark a session of open-clooooose-open-cloooooose... you get the idea (the doors have those little hydraulic things so they close slowly and he loves to watch). Again, not quiet especially since he squealed - loudly - with delight with each open-clooooose. When I finally got him out of the room, he'd scream at the top of his lungs, then go running up and down the halls looking for things to climb or get into.

I hoped that he might do better in the small classroom for the last hour, but by then he was very overstimulated and just couldn't do it.

I tried all kinds of things to occupy him so we could at least stay in the primary room with the other kids, but nothing could compete with the microphone, lights, and doors. We soon settled back into our routine of spending 2 hours each Sunday in the hallways or outside. I considered the day a "success" if he stayed fairly close to me (not as much chasing) and didn't have a meltdown (or only had 1 or 2). We went on like that for months.

And then a few weeks ago, I decided to try again. Just baby steps. I took him into the primary room, but instead of sitting with his class, we stayed in the back of the room by ourselves. When I offered him his puzzles, he accepted and we were able to stay there the whole time without incident. I was *amazed,* and humbled when I told my mom about it and she said she had decided that week to stop praying for him to go to class and pray that he would just be able to go into the room. Her prayer had been answered.

Encouraged, I tried again the next week. After a few more weeks I worked up the nerve to try taking him up to the front of the room to sit with his class. That resulted in a set-back as he decided his little chair made a great toy. He was continually moving his chair, then sitting in it and making himself fall over on purpose, then getting up and knocking the chair over again... he returned to his microphone obsession and when his plans were thwarted he protested by stripping. Not all the way, thankfully, just his shirt, shoes, and socks. There was a brief moment he started to tug at his pants / underwear but I was actually able to stop him before he went down that road. (yay!)

We managed to go to his classroom once during that time, but it was such a disaster that I realized I'd pushed too hard and I backed off.

Which brings me to last Sunday, when I decided to give it another try...






~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Autism at church: part 1
HE DID IT!!!!! (Autism at church, part 3)



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Autism at church: Part 1

I started to write a post about some of the challenges we've been having at church for the last few months when I realized I needed to share some background and it was taking a while to get to my story. So I decided to split it into separate posts.

~~~~~~~~~~~~~~~~~~

Going out in public in general is challenging when you have kids on the spectrum. Going to church is all the more challenging. Why? Because at church, people (including children) are expected to be reverent. From an outward perspective, that is typically interpreted to mean sitting still and being quiet (although there's obviously more to it from a spiritual perspective). I know all kids have difficulty with that. No one is shocked to see kids fidgeting in their chairs or whispering to the person next to them, maybe even (gasp!) talking.

However, behaviors such as running up and down hallways or around the chapel or classrooms, screeching and laughing hysterically, flipping lights on and off repeatedly, opening and closing doors over and over, climbing on top of pews (you know, because you can make a cool tunnel with your hands on the one in front of you and your feet on the one behind you), hiding under tables, crawling in and out of the "holes" in folding chairs, removing clothing, and rolling around on the floor are generally frowned upon. And that's before we even get to meltdowns. Wrestling with your screaming child in the foyer to keep him from running out into the parking lot, or having him disturb Sunday School with screams that can be heard for blocks? Also frowned upon. Even more so as they get older.

It wasn't a big deal when our twins were babies / toddlers - lots of families with kids the same age joined us in the foyer. But over time, those families managed to stay in the chapel with their kids and new families with younger children joined us. More time passed, and those families went back into the chapel and new families with even younger children joined us. Instead of the "I feel your pain" smiles we started to get the "aren't your boys a little old to be out here?" looks. And rather than join us they started to keep their distance, perhaps not wanting their kids to be unduly subjected to the influence of kids who were so much older and still needed to be taken out to the foyer. No problem, because before long we couldn't stay in the foyer anyway. We had to go outside or find a room to hide out in to avoid causing too much of a disruption.

I should interject here, my kids are good kids. We get frequent compliments from people who know them (and have seen them in their comfort zone) about how polite, kind, and well-behaved they are. But putting a child who simultaneously avoids auditory and visual overstimulation while craving tactile and proprioceptive input (translation: does NOT like crowds, loud noise, bright lights, and LOVES movement, spinning, deep pressure) into an environment with crowds, organ music, microphone squeals, and singing, where one is expected to sit still is a recipe for major overstimulation and potential disaster. It's not an excuse, and knowing that certainly didn't mean we stopped trying (quite the opposite), but we found that in the interest of maintaining some shred of sanity (ha!) we had to adjust our expectations a bit and just accept that it was going to take longer for our kids to reach a point of being able to handle being in church and learn appropriate behavior than it would for their neurotypical peers.

It's been tough but we kept at it because it's important. It's important because we want our boys to come to know and love their Heavenly Father, and to feel His love for them. It's important because that is where God wants us to be - to gain knowledge, to develop our relationship with Him, and to be spiritually uplifted.

To be honest, more often than not over the last several years I have felt more exhausted than uplifted by the time we left church every Sunday. On those days, I am often reminded of Ecclesiastes 3:1, "To every thing there is a season, and a time to every purpose under the heaven." I knew our persistence would eventually pay off, and until then we'd just have to do our best.

At this point Cuddlebug and Bearhug do really well at church for the most part. Every now and then they still need a "break" but those are few and far between now. I no longer have to keep an eye on the door of their classrooms for fear they'll go bolting out of the room (can't tell ya how many times they did that, and my biggest fear was they'd end up in the parking lot before anyone could catch them). They have come a long, looooong way.

Ever since Bitty was about 2 yrs old though, it's been "here we go again," even more so since January when he "graduated" from nursery and started going to Primary (Sunday school) with the "big kids." More on that in the next post...






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Related posts:
Autism at church part 2: Bitty wears. me. out.
HE DID IT!!!!! (Autism at church, part 3)
Monday Mumbers #1 (a typical day at church, by the numbers)



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Today is the big day!

It's been a crazy busy week getting ready for Cuddlebug and Bearhug's birthday! This birthday is especially significant because they are turning 8. For those who don't know, our family belongs to the Church of Jesus Christ of Latter-Day Saints (aka the Mormons), and in our faith children may be baptized once they turn 8.

For a long time we weren't sure if the boys would be ready for baptism when they turned 8, and given the difficulties they've had with church (mostly sensory-related), we weren't sure if they were going to want to. We figured we'd just play it by ear. It's not uncommon for children with special needs to be baptized at a later age, so we didn't make a big deal out if it.

Earlier this year though, they told us they wanted to be baptized when they turned 8. Given how they take things so literally, they wanted to be baptized EXACTLY when they turn 8 - on their birthday (thankfully not right on the minute, lol).

Since then they have gotten nervous a couple of times and decided they didn't want to, then decided they do want to after all. Anything new is cause for anxiety, so we've tried to prepare them as best we can, and we have reiterated that it is their decision to make, not ours or anyone else's.

Anyway... so I just wanted to share our exciting events of the day. We have several family members (both sets of grandparents and two great-grandmas) traveling here for the weekend so they can celebrate this special event with the boys. They're all arriving today, so it's going to be a crazy day :).

I'll be back with more details later and an official birthday post! In the meantime, feel free to check out my birthday series from last year where I shared their birth story and NICU experience.




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All dressed up with nowhere to go

Due to sensory issues and difficulty with church in general (I have a couple of draft posts about that, eventually I'll finish them up and post them), we have never made our boys get overly dressed up for church. We dress them nicely, of course, (with exception of the couple of times Bitty wore a Thomas shirt, haha) usually in khaki pants and a polo-style shirt with a collar.

Recently, though, we decided that since they are getting a little older maybe it's time to start dressing up a little more for church. So we got them each some nice slacks, dress shoes, dress shirts, and ties (clip-ons, but still). They were excited to have clothes "like dada wears" but when the first Sunday rolled around after that, they were not interested in wearing their new clothes. They complained that they didn't feel right, and Cuddlebug said they made him look "too handsome" and "too fancy."

Since it's just been in the last few months that they actually like going to church, I wasn't about to make a big deal out of what they wore, so the new clothes stayed in the closet (bummer). Until this past Sunday. Both of them were playing outside on Saturday and both got their shoes soaked. Well, it didn't help that Cuddlebug took his shoes off on the back porch and left them there (I didn't realize they were there or I would have brought them inside) and then it rained that night. His shoes were beyond soaked.

So Sunday morning, the only dry shoes they had were their new dress shoes. Well, if you're going to wear dress shoes you might as well wear the whole new outfit, right? Cuddlebug complained loudly but went ahead and put his new clothes on. Bearhug didn't seem to mind too much. Little Bitty was oblivious to the commotion as usual. We arrived at church to find the parking lot a little emptier than we'd expected. It was pouring rain so dh dropped us off by the door and went to park. We went inside and found out they had cancelled church (as a precaution due to possible snow/ice). I guess someone called a few minutes before we left, and we didn't hear the phone (can't imagine why, with the noise level at our house? hehe).

So we went home and I took a few pictures, because who knows when they'll be willing to get all dressed up again. They are looking so handsome, and so grown up! *sniff sniff* As you can see though, it is still hard to get them to both stand still and just smile without the theatrics, especially both at the same time ;).






Bearhug is wearing the black pants and blue tie, Cuddlebug is wearing the brown pants and red tie.




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Sketchpad Discoveries: The faith of a child

I mentioned the other day that the boys use their sketchpads to help them cope with overstimulation. I recently went through their sketchpads out of curiosity to see what they had drawn and found some really interesting things so I thought I'd share some of what I found.

These are some of the more inspiring drawings and letters that I found:

Drawing of Jesus by Cuddlebug

Cuddlebug's letter reads, "Dear Jesus, I wish you could visit me." He included his phone number and house number also, so Jesus would know where to find him. How sweet is that?

Drawing by Bearhug

Bearhug's letter reads, "Dear [Bearhug's] family, I made this for my family. I made for that I am a child of God. Love, [Bearhug]" So precious!

To really appreciate these, you have to understand that both of them DESPISED going to church until just recently (mainly because of overstimulation, it is often overwhelming for them). They have come home in the past with drawings of angry faces saying, "I hate cerch" and have complained fiercely on a weekly basis about going. They have each had countless meltdowns in church and we've gotten plenty of "disapproving" looks. If you have a child with autism, you know the looks I'm talking about! So to see drawings and letters like this just make my heart feel so happy, I can't even describe it :).

Related posts:

• The faith of a child
• Cuddlebug's drawings
• Bearhug's drawings
• Little Bitty's drawings
• My husband's son...
  

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Try this Tuesday: Coping with overstimulation

A significant challenge for our sons is coping with overstimulation. To some extent, we can avoid places that cause overstimulation but that's not always an option. Church, for example, is especially difficult -- there are large groups of people, loud organ music and singing, bright fluorescent lights, a myriad of perfumes and colognes, microphones, and in the midst of all that, an expectation that children (and adults) will be calm and reverent. It's a recipe for disaster for kids who are prone to overstimulation and hyperactivity, but we feel it's important for our family to go so we've been working to find helpful coping strategies for a long time.

We've tried a lot of different things over the years, and not all of them have been successful. Getting them out of the overstimulating environment usually works well, so we've taken them on many walks outside around the building, but we were hoping to find a coping strategy that would allow all of us to still participate in church.

One thing that seems to be working pretty well lately for our older boys (now that they have the attention span for it - that's another challenge for another post) is drawing in a sketchpad. They've never been particularly fond of coloring books (they like to look at them but won't spend much time coloring in them), but the blank pages of a sketchpad allow their creativity free reign to draw or write whatever they choose. Sometimes they draw pictures or race tracks, sometimes they write short stories, sometimes they fill entire pages with random numbers or scoreboards (rankings with names and scores) for an imagined competitive event.

Whatever they choose to create, it helps them tune out the overstimulating sights and sounds around them and by doing so, helps them keep from escalating to the point of having to run from the room screaming (I'm not exaggerating). We've noticed a significant improvement in their ability to be reverent and stay with us and/or their class. They don't typically stay seated, because they prefer to use their chairs as a table, but that's a small price to pay IMO. Thankfully, their teachers at church are on board with this too.

You might be wondering, what about actually paying attention and learning in church? We've actually found that the sketchpad helps with that too. They appear to be completely ignoring what's going on around them, but actually being able to tune out all of the excess input helps them focus on what's being taught and they are indeed paying attention. Their teachers have commented to us about how surprised they were to find that they could ask them any question about the lesson and they know the answer. They couldn't tell they were even listening, but it's clear that they are.

The sketchpads can be helpful in other situations too, not just in church. I'm just sharing it in that context because that's where it has been particularly helpful for us.

Click here for more Try this Tuesday.

Stay tuned - I have recently spent some time looking through their sketchpads and found some very interesting and intriguing things in there, so when I get some time I'll be posting some of their sketches here. :)

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Funny quote

On the topic of church, that reminded me of a funny quote from Bearhug a while back (about a year ago). We had asked them what they learned at church that day, to which they usually responded "I don't know" or just ignored us altogether, but that day, they actually gave us a description of one of the pictures they'd talked about at church and what they learned from it.

I told them I was impressed that they were learning so much, and Bearhug said “yeah, I’m clever. I’m a clever Jesus man.” I couldn’t help but laugh, it was such an off-the-wall thing to say :).

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8 words you don't want to hear

at church are, “your son is screaming, and he’s half-naked.” Sigh. At least this time it was my 3-yr-old and not one of my 7-yr-olds. About 6 mos ago, someone sent one of the teenagers at church to get me when one of my twins was having a meltdown in the foyer. He said, with all the tact in the world, “I think your kid is going crazy or something.” Ugh.

I digress. Back to this past Sunday, and Little Bitty. This happened not 10 minutes after I’d left his nursery class, waited in the hall for a few minutes and not heard any screaming, so figured the coast was clear to go to my class. I had even told dh how proud I was that he was doing so well, as that was the earliest I’d been able to leave his class in a long time.

I went to his nursery class to get him and sure enough, he was screaming hysterically, his face and body were red, and he was in fact, half-naked. He’d pulled off his shirt and shoes. He was still wearing his pants and socks, though I’m sure those were next. One thing that is nice about Little Bitty is that he will sometimes actually calm down when I pick him up. Thankfully, this was one of those times. As soon as I picked him up, from the lap of the poor woman who’d been trying to calm him up to that point, he almost immediately started to settle down. After a few minutes, I was even able to get his shirt back on (I didn’t push my luck with the shoes). He was fine the rest of the time (yay!).

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