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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