Easter Egg-Stravaganza!

When I told Ethan we were invited to an egg hunt for children with autism and their families, he replied, "That is going to be the worst egg hunt ever!"  After laughing and agreeing, I did wonder what it would look like.  It was pretty fun, though.  The organizers had some great ideas.  For one, they included sensory bins with eggs in them.  For children who may not understand the idea of a hunt, they could sit at a table and rifle through Easter grass.  Bubba tried it out and found probably every chocolate in the bin in like seven seconds.  They also had a couple of bunnies the kids could pet and a whole bunch of people blowing bubbles for the kids to play in. 

The most heart-warming part of the event for me was watching the brothers and sisters helping their autistic siblings.  For our kids it has burden but a much greater blessing to help Bubba.  His big sisters remind him to put his clothes on, flush the toilet, clear the table, shut the door, etc, etc, etc.  They cheer him on when he finishes a puzzle or colors a picture.   And someday his baby sister will probably do the same for him. 

Something I hadn't counted on; while watching the kids playing on the slides I talked with another mom for a bit.  We were pointing out our kids and as I motioned to Bubba, who was squealing and  wearing this doll beanie he occasionally likes to shove on his head, I felt as if I was seeing my son for the first time as an autistic child.  Not as my baby boy, but as a child with autism.  It was almost like an out-of-body experience.  I think that probably happens to all parents of special needs kids at some point.  I just stared at him for a minute and saw how joyful he was.  He didn't look anything like a "typical" kiddo, but he was clearly having the time of his life!

So Saturday did NOT end up being "the worst egg hunt ever".  It was, instead, enlightening.

Bubba's Reign of Terror

As I write this I'm sitting outside my son's room, listening to him scream.  I normally would be doing last-minute house tidying and preparing dinner, but this has been a difficult day.  It's the third day like this and I think I'm about to lose it.  I am so incredibly thankful for a husband who is easygoing about dinner being ready. 

It seems like a wise idea to document this for when we see the specialist.  The last two days have convinced me that he needs something to change, although I'm at a loss for what that could be.  Here's what's going on:

His manic stage:  Ethan and I refer to this when we see behavior that looks as if he's just eaten a barrel of sugar.  What does it look like?  Racing through the house.  Pulling books out of bookcases.  Dumping toy containers.  Pulling dishes from the cupboard and throwing them. Opening the puppy's kennel to let him out.  Laughing hysterically.  Flushing things down the toilet that don't belong there.  Turning on water faucets and leaving the room.  Throwing random things (even large furniture) down the stairs.  Going through folded laundry and scattering it.

Screaming:  Self-explanatory.  :)  I guess I should say that screaming sessions can last for an hour.

Less sleep:  This is interesting because autistic children usually have sleeping problems anyway.  But up to this point I've been able to at least lay him down in his bed and he will stay fairly quiet while the other children are sleeping or resting.  During nap I try to get some time away to just be alone for a bit.  Wednesday, yesterday, and today he was so loud in his room he woke his baby sister.  He was pounding the walls and slamming his door. 

Ok, so as I was writing this it occured to me that people who don't know our other kids may assume that we just allow this behavior, or maybe with Bubba we allow it because he's autistic.  SO not true.  He does have consequences for his behavior, however, he doesn't react the way other children do.  It's hard to describe unless you've seen it first-hand.  I've been bitten, slapped, and hit by flying objects numerous times while disciplining him. When he's in the manic mode he will laugh hysterically no matter what you do.   It's just a constant, constant struggle. 

Aaaahhh, that's good to at least write about this.  Please pray for us as we try to find a solution for these behaviors.

No Room At the Inn

This blog post has been on my heart for a long time.  I've struggled with the decision to write it, but feel that it's too important to stay quiet.

Several weeks ago our family made the difficult decision to leave our church.  I've only attended and have been the member of two churches in my life; the one I grew up in and the one I found after moving away for college.  This was the church where I met my husband, where our babies were dedicated, and where new aquaintences became family for life. 

Since we left, Sunday mornings have been a mix of hope and discouragement.  We've attended several churches throughout the valley.  The girls usually jump right in with the other kids their age, no problem.  But when we try to drop Bubba off, it's another story.  Usually he won't let go of us.  We've taken him into the main sanctuary before but he makes strange noises and the looks we get tell us it's not acceptable.  When we attempt to drop him at the classroom, we make sure to inform the teacher that he's autistic and explain a little bit of what that means.  Sadly, the most common response is the "deer in the headlights" expression.  You can tell they absolutely do NOT want him in there. 

Today we happened to arrive at a church on the day of their Christmas program.  We took Bubba and the girls to the sanctuary first.  He was holding still but making a continuous sound like he was clearing his throat.  After some obvious looks our direction, I took him out to try the children's  ministry.  After struggling to hold him while typing our information into the check-in center, a man told us that the kids would be going up on stage and that our son needed to stay with us.  I understood, but wasn't quite sure what to do next.  So I settled for taking him into the foyer and sitting on the couch.  I tried to keep him busy with songs and stories.  After a few minutes Ethan came out to check on us and we switched places.  While I was in the sanctuary, Ryan pulled a Christmas ornament off the tree and it bounced across the room, but that was the worst that happened.   I went out spell Ethan for a few minutes.  By this time Bubs was getting pretty antsy.  He started alternately rolling on the couch and running around the small area.  I thought about taking him outside but our coats were in the sanctuary.  A couple of ladies sat down to talk in the same area and gave us encouraging smiles.  They seemed nice, but I felt completely humiliated when one of them leaned over to Bubba and said (in a syrupy sweet voice), "We don't run in church!"  Seriously.  I was trying my hardest to keep him well-behaved, but he is five!  He was actually doing a good job, considering.

I know this church we visited is a great church.  In fact, all of the churches we have visited have been great churches.  But I'm starting to feel like the unwanted family!  I feel that this needs to be said:  if we were going to church for my first time, we would NEVER return.  Parents of children with special needs must feel that they are welcome!  If you are in the ministry in any capacity, do you know there are families like us out there?  Would they come back to your church after one visit? 

As a side note, the church we have left was fantastic with our little boy. (Not the reason we left.) One of the best ways they helped us was just by asking how they could do better; what we needed. I will always love those people for the love they showed all of our kids. Thank you!

Please know that we have not harbored bitterness in our hearts towards any one person or church.  We understand the place those people are coming from.  In fact, I'm ashamed to say that once I was one of them.  I didn't really know (or particularly care) how to help those children or families.  I didn't look past their "church face" to see their hurting hearts, and I'm ashamed of that.  But now that we are on the other side I feel that it's important that someone advocate for those families.  It's hard to take your family anywhere when you have a child with special needs.  But the place you should never have to feel unwelcome is in God's house. 

Thoughts on Our Boy

This is an old picture of Bubba, but with all the changes I've been going through with computers I haven't downloaded much from the camera lately. 

I've wanted to write down some of the developments we've been seeing in him lately, if only for my records.  I can't say how many times in the last few weeks Ethan or I have said something to the effect of what a joy he is to raise.  This is the same kiddo that has brought me to tears of frustration many times in the past.  I don't know what's going on, only that my heart has never felt more full.  We've noticed that he's showing first-time obedience most of the time.  (Shocking!)  Although he's not a perfect gentleman to his baby sister, for the most part I can trust him to play nicely with her.  He'll ask her to go outside with him or push him in his tonka truck.  He also LOVES to have her chase him and tickle him.  It's adorable.

After finding out he would be having a very inconsistent schedule in public school this year, we decided to keep him home.  He's following a preschool curriculum that I write to his ability level.  A lot of the ideas for preschoolers aren't even something he can do because of the language, but we've found some creative ways to work around it.  One game he likes involves hiding his favorite blanket.  When it's time for him to find it, he has to listen to directional clues like "under, to the left, inside" and so on.  He laughs like a hyena when he finds it.  :)  He's done "bowling" with paper bags, where he has to knock down the paper bag with the right letter taped to it.  And of course, there's so much we can do that appeals to his need for sensory stimulation.  Making letters in a pan of rice or feeling sandpaper numbers is great fun.  Of course, I'd have much more trouble doing this if it wasn't for his aide being here every day to help him.  Makes life far easier!

Here's a funny thing he's been up to lately.  He'll look me (or Daddy) in the eyes really sweetly and say, "Mommy want an owie?"  His little fingers are always at the ready to pinch if we say yes! 

I know our lives with autism in them have been so hard, but the joys are so rich.  Every little triumph is cause for great celebration.  I'm thankful to God that He blessed us in this way!

I Knew It Was Coming . . .

Ever since I held my wonderful little netbook in my hands (which, for the record, was at the beginning of my 3-month hospital stay when I HAD to have contact with the outside world!) I knew this day was coming. Someday it would die, or be destroyed. And in our house, something is much more likely to be destroyed with Bubba around.

Yesterday he was having a great day. He was mellow and played by himself after nap. But something, and I have no earthly idea what, upset him. And when that boy gets upset . . . watch out! He was in the bathroom and he just started screaming. I could hear the situation escalating but by the time I got to him it was too late. He took the toilet plunger, ran out of the bathroom, and started hitting everything in sight. One of those things, unfortunately, was my netbook. (Moment of silence, please.) He hit the screen and it shattered on the inside. I never would have left it open like that but I was following a recipe for dinner. Sigh.

One of the lessons I feel that God has tried to teach me since having Bubba is to not hold too tightly to my possessions. And I really never thought of myself as someone who struggled with that. But my son has moved me to tears on more than one occasion by breaking and destroying things -- my Scentsy candle, Spunky's tennis trophy, a special room decoration that was given to Calico. I know . . . it's just stuff. But it's still a challenge for me. I thank God that he has prepared a place for me that neither moth or rust or little boys can destroy!

Desperation

It has been one of those days.


Morning. He's in what I think of as his "manic" mode. He goes to the fridge and pulls out the coffee creamer. Pours it into his sister's cup. I take it from him and gently say, "No, that's not for you." As I wipe the spilled creamer off the table and his hand he's angered. He grabs his cereal bowl, partially filled with milk and rice chex. He hurls it, soggy flakes raining down on the carpet and milk washing the table. I give him a firm spank on the bottom and put him in the corner.


Wiping the table and gathering disintegrating cereal from the carpet. Baby has crawled near to him and he's about to strike her. I quickly scoop her up and away to safety. We're late starting school, but first I must clean up this mess.


I read from the book while he crawls into my lap. He's overly affectionate and I feel bad that it bothers me. His head bores into mine and he kisses me repeatedly on the lips, his little hands holding both sides of my face. I. must. focus. on. him. The girls color and wait, as they have done before.


Therapist arrives. Oh happy day.


Naptime. He's in his bed, but strange sounds eminate from his room. Squeals at random moments. He comes close to sleep twice but it doesn't happen.


Bounding from his room, he heads straight for the pantry. "I want peen budr." I give him one spoon of peanut butter and some grapes. The grapes anger him. "I WANT PEEN BUDR."


We head out to the trampoline. The baby goes into her high chair with a treat and watches us from inside. He giggles hysterically as I crawl through the net. He pulls my hands and I start jumping. It's actually fun to jump with him for a while. But eventually I am worn out from being pulled down. Always being pulled down.


The girls want to run races in the house. This is okay. It keeps him happy and this is our goal.


In the kitchen, cooking dinner. He scrambles up to the counter. I really wish he couldn't do that. He's not supposed to come into the kitchen but it's hard to keep him out. He's fascinated with the stovetop, but I worry. "Come to mommy! Let's go out of the kitchen!" I reach under his arms to swing him towards me. He puts an extra oomph into it and his knees crash into my ribcage. The pain is so thick I can feel it in my back. I double over and lean against the fridge. He is laughing, running, screaming.


Dinner time. Sloppy joes, sweet potato fries, corn. Daddy has practice tonight, so he is home very briefly and then gone again before we sit down. We pray and begin to eat. He pokes at the food. Stirs the ketchup with his fries. Leaves the table and wanders away. I go to him. "It's time to eat." Take his hand and lead him back. He takes his fork and begins to flick corn around the table. It's time for a new tactic. I get the cookie sprinkles from the pantry. "Eat a bite and you can have some sprinkles!" I say. He eats one bite and holds out his hand expectantly. Three more bites are consumed before he loses interest.


After dinner, we must get the older girls ready for Awana. I comb hair and button vests. He takes a Little People gas station and throws it at his sister's head. She is sobbing and he is laughing hysterically. He gets a swat on the behind again and has to apologize. He looks completely confused when I tell him that hurt your sister. He is supposed to sit in the corner with his blanket. He sits for less than a minute before he streaks across the house, dumping toy containers. He picks up a hard-bound book and sends it flying through the air. It misses the baby by a fraction of an inch. He gets another spank and sits down. Immediately he gets a worried look. "I nego poddy." I sigh and open the bathroom door, flip on the light. He races in, laughing and pulling down his pants. He squeals and screams happily from the bathroom while I scramble to keep the baby from putting a cord in her mouth. Waiting for our friend to come pick up the girls.


He races from the bathroom, completely naked. He heads straight for the couch. This is normal, and I am expecting it. I race after him before he can plant a naked behind on the fabric. I strap on a diaper as it's getting close to bedtime. Praise the Lord. He pulls my hair and laughs crazily.
It hurts. The baby is crawling quickly toward the open door of the bathroom. I shut it, but not before seeing the urine all over the seat and floor. Why? I grab paper towels. The girls get picked up. I wipe up the mess and find some anti-bacterial wipes. He's found my computer and decided to throw it. He knocks over one dining room chair, then another. I stop him and see baby about to crawl into the bathroom again. I left the door open.


He is in serious need of a "re-set". I scoop him up and carry him up the stairs. Now he's angry. He bites my arm. He doesn't let go. It's so painful and I get angry too. But I know I'm seconds away from freedom. He has a doorknob cover over the inside of his door. I set him on his bed. "You need to have some time by yourself." He screams. I shut the door.


He's instantly fine. The room is a lifesaver. Sometimes I want to put him there more often. Last night I put him in there and he fell asleep before I got a diaper and jammies on. I regret that.


I head downstairs and finish wiping down the bathroom. Change the baby's diaper. Clean the table and put leftovers in containers. Put the baby to bed.


I get him out of his room. He has not fallen asleep; I'm relieved. We take his favorite Cars book and curl up on the couch. He wants to read, yet he's still in his manic mode. He turns pages too quick and rips them. At least he stays in my lap. I'm grateful it's not a library book.


We head back to his room to put jammies on. Taking him anywhere is like herding cats. We finally get to the room and he knows what's coming. "Nooooooooo!" His mood flickers between desperation and joy. It's weird. He bounces into his bed with crazy giggles, then starts screaming.


I do the only thing I know to do. I put most of my weight on him as he lays down and start singing a hymn, quietly. In Christ alone, I place my trust. He is my light, my strength, my song. I don't know who it's supposed to soothe, him or me. He bites at my sweater, more gently as the song goes on. By the end he is still moving erratically, but is calmer. "Goodnight sweetheart." I lean in to give him a kiss on the forehead and he slaps my face. "No!" It's times like this that hurt the most. I guess I'm wanting the overly affectionate boy now. It's time for me to leave.


As I sit in my chair and type this, I think about how much I love my little boy. I pray for him. And I feel desperate.

Solutions

The last several months we've been struggling with Bubba's toileting. He does a fantastic job all day long, with the exception of when he immediately gets up from nap. About three to four days a week I have gone in to wake him and he's sitting in his closet, with poop smeared all over the floor and walls. (Sorry for the graphic description, it's hard to make that sound better.) We felt like we had tried everything to stop it. I was checking his room every 10 minutes and he was being consistently disciplined. Then when we did the SIB-R the woman who administered it said it's really common for autistic kids to do this. She said it's probably a "stim" for him (shorthand for self-stimulation), or something he does to help him with his sensory input.

So, I got to thinking. If he was seeking sensory input at the same time every day, was there something I could give him to substitute for what he was doing? I thought about playdough, but surprisingly it's not his favorite thing. Then I remembered my Scentsy candles. A few months back I hosted a party and it did well enough that I got five Scentsy bricks. Bubba L.O.V.E.S. to smell them. He will go in the pantry, get them out, take them to his spot at the table, and sniff. It was worth a shot. Well, it has been one week and he has not pooped in his closet! Every day I get him up, praise him for not pottying in the closet, and bring him downstairs to the "Scentsy Spread". :) He sits and sniffs and scratches his fingernails through the candles for probably half an hour. He makes a little bit of a mess, but hey, it's SO much better than the alternative! Yay for good-smelling candles!