Discipline and Negative Behavior

Straight off the happy train back into Downersville! Well no, I don't think this is going to be as much as a downer as it is just talking about a tough phase we are in right now.

Will is 3. Three year olds are widely known to be adorable little devils at the best of times. My nonverbal 3-year-old can be the devil and all his little minions rolled up in to one ball of temper and teeth and nails. Will gets really, really frustrated. When he was smaller he would just roll along with everything and went with it. Things are different nowadays. A friend of mine who has an incredible child with autism, who is I believe about 9 years old now, said when her son was Will's age he was a "hot mess." I would definitely use this term to describe Will. He's a total hot mess!

Can you imagine not being able to communicate effectively? What if your most-effective methods of communication were to bite, pinch, and scratch? It gets my attention pretty darn quick and I can imagine it's a way for Will to release his negative feelings and gain some control. He has learned that doing these negative things to me will get my attention fast and he has learned to do them all the time. Sometimes he laughs at my reaction to him scratching me. Like he thinks it's funny when I say "Ouch. That hurts mommy." Great.

A recent pinch from Will on my arm

This biting and scratching and pinching crap hurts. It hurts like a mother. Will's got the sharpest little teeth and comes at me from all angles. He is known to drop down and bite my leg or sneak up from behind and bite my booty. In the last month he has learned to pinch and scratch. And he is strong! He drops down now like a noodle and makes it really hard for me to pick him up. He knows how to fight back. He has that all figured out. I worry he is starting to manipulate me in some way, but it's so hard to know what to do. It is really tempting to spank him. Several people have told me to bite him back or scratch him back, but I don't see how this would help. He doesn't really understand what he's doing and doesn't know what it means to hurt me. He wouldn't understand why I am spanking him. And the times I have scratched him back or snapped him on the cheek to make him stop, he just gets more mad. It becomes a cycle of madness.

These days Will is starting to understand words and simple phrases more, which is great; but he still really lacks in understanding why we do things or why he can't do certain things. He just gets really upset when he doesn't get to do the things he wants. For instance, he wants to go out in the front yard a lot. We live on a quiet street, but he certainly can't be out there unsupervised. And I don't always want to go out front. He doesn't understand if I say to him "we will go out there after I finish what I'm doing"... or whatever. He gets so mad when he doesn't get his way and out come the teeth and nails and screams again. This kind of thing happens all day long. Sometimes someone forgets to lock the front door. Will seems to realize this immediately and will be out the door before I can stop him. I then have to try to either coax him into the house (which works maybe 1% of the time), drag him into the house while avoiding teeth and nails and fighting his weight and strength, or I simply give up what I was doing and go outside and play with him for a while. You know what annoys me about this? We have a pretty fun backyard with tons of stuff to do back there. The front yard has our cars in the driveway and grass and a tree and some flowers. I don't know what it is about the front, but he just loves it. He always wants to be out there, no matter if it's raining, snowing, windy, etc.

So how does one discipline a child like this? I admit I have lost it a few times and yelled back at him. He looks at me with a blank stare, doesn't care or even understand that I am mad or he's in trouble. Will shows no emotion when I yell at him. Sometimes he laughs and thinks I'm being funny. It is extremely frustrating. It's infuriating. I have to check myself too and take my own break. A mommy timeout. Regroup. Try again. Then try to cheer him up, even though I am still pretty upset with him. He doesn't get social cues, although he is starting to not like stern voices or being scolded. I think this is a good step.

But I have got to find out how to stop this awful behavior. Therapists have given me some ideas. One therapist said to have him hit a wall or stomp his feet instead. This worked maybe once. When his little mouth is ready to bite, there is very little that can stop him until he bites. He wears a chewy tube all the time that I can shove in his mouth instead, but this is probably 10% effective. He is frustrated and wants to hurt me. I don't hold it against him. Some days I handle it better than others. If we're at home I usually put him in his room alone to cool down. But there are days when he's gone in there 15 to 20 times for a time out. It gets to be a little much and I don't think he needs to spend that much time alone in his room. It's hard to know what to do.

I really hope preschool helps with this. I have heard great things about the preschool class he's going into in September and I think it will be great. He is going to be there 4 days a week for 3 hours at a time and some of this behavior is bound to come out. There is also behavior therapy out there and child psychologists and I would love to get him into something to help control his emotions. I'm working on getting something going for him. 

Will's Strengths

Hello! Today I'm going to write a positive post... with likely tons of exclamation points!!!!!!!!! My dad said my blog was a little depressing and another friend said she made sure to grab the tissues before settling down to read it. I am sorry for being so negative. It feels good to talk about all that stuff, though, as it is in my mind and sometimes I look at our situation as a real tragedy. This is no tragedy, though. This is a good life and we have it better than many people of the world. I really don't know true suffering compared to some. This is a truth in my life that I always hold on to. I know we have it good. If you know me in person, you know that I always try to keep things upbeat. I don't like to rock the boat much and enjoy laughing and making people feel good. Sometimes the negative feelings get buried inside and I think it has been really helpful to write those feelings out and now I can go back to them whenever I feel the need.

So let me tell you about some of the incredible things about Will!

Laughter and smiling: My very most favorite thing about Will is his ability to find humor in the smallest things. I can say a phrase in a certain way, like "THIS little piggy..." and he cracks up. Will has no filter on his feelings and emotions like the majority of us do and when he is happy, you know it's an undeniable, genuine happiness. Along with his laughter comes his amazing smile. He has a bright-eyed, super sunshiny smile. I love it.

Will laughing with Grandma

Ball Skills: Will has a really good attention span when it comes to doing things he enjoys. This kid probably spends 60% of his awake time playing with bouncy balls of all shapes and sizes. He will play with a ball alone or with other people. He is extremely motivated by balls! You should see him catch a ball. It is amazing. I will try to get a good video of him doing it. He also likes to sit down with a small bouncy ball and listen to it hit the ground with the different ways he drops it. He turns his ear towards the ball and concentrates on the sound. I know I kind of put down the doctor in a previous post who told me to get Will into the Special Olympics, but if he continues on with his amazing ball work, I am really thinking about getting him involved with them. He could be an Olympian! I can see it now.

USA! USA!

Easily Entertained: Another great thing about Will is that he is rather easily entertained. If we are in a safe kind of environment and one that he feels comfortable in, like a house, the park, or someone's backyard, he is usually a really good boy. I really feel blessed that Will can entertain himself so well. It lets me relax and enjoy the company of friends and family more. It is a different story at home, however. We spend so much time here and I think he gets bored or worried I'm going away if I am moving about the house trying to get things done. But if you were ever to invite us over to your house, Will would probably be an angel and enjoy climbing your stairs, opening your doors, bouncing your balls, and playing in your yard. He also doesn't mess with people's breakable things. It is really nice.

"The way this sand falls is fascinating."

"This water feels good."

"This metal is fun to stomp on and makes a great noise."

"These bubbles are supreme!"

Intelligence: Remember how I told you the doctors down at Children's thought Will has an intellectual disability? Well, I want to dispute that claim right here. I think Will is much more intelligent than he is able to show. He doesn't understand or have particular interest in many things, but he is smart. For example, one day I opened the refrigerator and found a bar of soap where the sticks of butter are. I thought it was Colin playing a joke on me, but he denied it. Then I realized it was Will. He was playing in the bathroom and took a wrapped bar of soap out of the cabinet. He then took it to the kitchen and matched it up with the butter. Isn't that something? To me it was incredible that he made that association. A bar of soap is kind of similar to a cold stick of butter. I told some of his therapists this, but they didn't find this as profound as I did I guess. This to me is a sign of intelligence.

Another example is Will will sometimes take a frying pan out of the cupboard and set it up on the stove top right where we normally cook. He will take a spoon out from the drawer and add it to the pan. He is really observing things more than is apparent at first.

Will is really starting to understand language a lot more than ever. He is definitely delayed in this category, but in the last 6 months he is starting to understand things more. I can ask him "would you like pancakes?" and he gets so excited and leads me to the kitchen to make his favorite food. I tell him, let's put on your shoes and he stops and lifts his feet and lets me put his shoes on. We can tell Will that we are getting ready to go somewhere and that he needs to get into the car, and he runs right for the door and heads outside.

Will doesn't watch TV or play video games. I mean, he is only 3; but still, TV has never interested him (other than one particular music DVD I played at least a couple hundred times for him... it was nice while it lasted)! I said to Mick the other day how I feel Will is probably going to be more well-rounded and experienced than Colin due to the fact that he has very little interest in electronics. He is learning so much through his environment. It would be really nice for a break if I could sit him down to watch a little TV, especially some of the Signing Times videos, but so far that's not happening. I'm okay with that.

Animal Love: Will loves our pets. He particularly likes our dog Lucy. When he is feeling like cuddling, he will cuddle right up with her and suck his thumb. She doesn't mind. I want to get Will a service dog someday if I can figure out how to go about that. I love animals too and am happy he likes ours so much.

Will also loves our new kitty, Ricola

People Love: Will loves his peeps. He particularly adores his dad and his grandpas. He is also starting to like his grandmas and my sister more too. The more time we spend with certain people, the more Will is comfortable with them. He has a tendency to like men more than woman, although I am the number one person in his life. Maybe I am enough as I am the ultimate woman! Ha ha. Just kidding. I'm just his mommy and I'm glad he loves me and trusts in me so much.

Mick reading to Will

Grandpa dancing with Will and Mason (my nephew)

Enjoyment of Praise: A particularly-nice thing that makes therapy a lot easier is that Will enjoys being praised for what he is doing. He loves when we (therapists included) clap for him after he accomplishes something. I hope this lasts for a long time as it is an easy thing to do and he is really motivated by it. He also likes to look for recognition after doing something. My friend was over the other day with her kids and Will went flying down the slide like a pro and he looked at her and waited for her to acknowledge what he had just done. He does this kind of thing all the time. It is really an endearing quality and I am told a good sign in his development.

There are many other examples I could get into, but I think I will save them for another post sometime. These are the main ones for now.

I am learning to work with Will more effectively and take him to do the things he enjoys rather than do things that upset him. I always end up pushing him a little farther than he is comfortable with, but I hope it makes a difference someday and doesn't have a negative effect. It isn't bad to push him, though. And I'll tell you, doing the things he loves does some days become tedious. Sometimes I just want to do something different and exciting! I mean, I don't particularly enjoy standing out in the hot sun watching Will go up and down the slide 40 times, but I stay there because he is happy and is working on his skills. 

The Big Evaluation

Nearly a year ago now Will had an evaluation done at Children's Hospital in Aurora, Colorado by a developmental pediatrician and her team of therapists and a psychologist. They all looked at him and asked him to do things. The only thing Will wanted to do was open and close the various doors in the unit. It was so hard to get him to do anything. We had to tell them that he can do more than he is showing you now. And they had a zillion and one questions all about everything from our family history to pregnancy history to Will's history. It was an exhausting day. It feels really strange to have people poking and prodding your child as if he were a specimen to behold. I had to remember the goal was to find out what exactly is going on with him and if there is anything else we should be doing, and I guess this is how it's done.

So why did we want to have Will evaluated? Mainly I really wanted to know what is going on with him. He is in a gray area for many things. He could have this, or he does this sometimes, etc. I thought maybe he has some kind of brain damage or something. Or maybe there is a genetic condition. I had read tons of times about how early intervention is key and I wanted to make sure there wasn't something we were missing. I'm one of those people who really want to know I guess. I just want to know! It may not even change anything, but I just can't stand to leave a stone left unturned.

The results of this evaluation were official diagnoses of childhood apraxia of speech, global developmental delay, intellectual disability (formerly known as mental retardation). I couldn't stand that last one. It's as if they were telling me my son would never amount to much. They told us to get him into the Special Olympics. They gave me a handout with this poem called "Welcome to Holland." If you have time, read it here. It's a nice sentiment and all, but not really comforting at the time. I suppose it may be more meaningful down the road. I still don't really believe my son has an intellectual disability... or might not be very severe... or maybe he will grow out of it. He is very far behind his peers at this point, but I see intelligence in his face. I see a boy who can't make his body do the things he wants it to.

From this evaluation Will was referred to several different doctors and tests. We spent a good deal of time in Aurora over the fall and winter. He was ordered evaluations by Genetics, Ophthalmology, and Neurology. They ordered a full body bone scan, front and back; and a brain MRI to look for anything unusual. He also had urine and blood work done for a metabolic panel.

The Genetics evaluation was the one I was most looking forward to. They dissect your child and lives even deeper, but it's nice to see actual results in the end. I found it funny that they said he had slight dysmorphic facial features, mainly his big smile. I wanted to ask, "well have you seen his dad or his brother?" All three have that same large smile! -Same thing with his tall, lanky body. Genetics ordered a microarray of his DNA and we waited and waited for 5 months for the results. At this point I was searching for every possible genetic condition that he could possibly fit into. I made myself batty waiting. I thought it was taking so long because they were examining it even deeper. I didn't really understand much about genetic testing at the time and I honestly still don't. It turned out the results were "lost in the mail" for a couple of those months. Nice! I actually asked Will's usual pediatrician if he had gotten anything from them and he was the one who told me they found no concerning findings. The doc was looking on his little computer trying to tell me what everything means. It was kinda funny. I did end up getting the official report that went into greater detail. I'm glad to know he doesn't have a genetic disorder. However, that leaves even more unknown.

Will saw an ophthalmologist from Children's who had an amazing bedside manner. I loved that old dude! My mom came with us to that appointment and I think the doc enjoyed that. Will's eyes looked normal. I was worried about Will's eyes because his pupils tend to be really large while everyone else in the room's look the same. There was no explanation for this and, in fact, they were normal size and reacted perfectly during the exam, of course.

The worst part of this whole workup was the bone scan. I couldn't stay in the room for this. Will hates being confined or held down in any way. He screamed bloody murder for a good 20 minutes while the techs got it done. It was ridiculous. I was crying in the hallway by the time it was over. When the lead tech came out to tell us it was over, all four people in there were sweating and did not look happy. This leads me to wonder about post-traumatic stress. Why does Will scream like that when anyone unfamiliar comes close? Why will he not lay flat on his back? Why will he not let me cut his hair without throwing a raving tantrum? Why does it take three people to hold him down to cut his toenails? A lot of this has to do with his monster sensory processing disorder, I'm sure. I hope all these things aren't going to cause some bad problems for him as he gets older. I think he feels the loss of control greatly. He doesn't understand why we are doing this to him. We aren't trying to hurt him.

Finally, Will had the brain MRI under sedation. This showed two things of note: 1) An old brain bleed; and 2) A Chiari I malformation. The brain bleed looked old, something that happened during birth or right after birth and was punctate. I have no clue as to how this happened. It isn't in a region of the brain that controls speech or development and the neurologist was not concerned. It is yet another mystery. Now, the Chiari malformation I can write much more about.... so I'm going to do that in my next post. It's a complicated and sometimes controversial condition. A link to some general info is here to get you started if you're interested.

A New Blog, An Old Journey

They say history repeats itself... so away we go again! I'm starting this new blog to help document our lives and give some insight into my personal feelings, struggles, pleasures, amazement, and amusements that go along with raising my son Will, who happens to be developmentally-challenged, and our family experience as I see it. Will has a big brother Colin who is the angel of my life and a happy, fun, super smart kid. Colin is now 5-1/2 and Will is 3. There's also the big guy of the house, Mick, who is a heck of a hard worker and cool and fun-loving dad. I'm Lauren and the mom. I do a lot of mom stuff and house stuff; a lot of reading and a little too much obsessing over certain cable TV shows and immersing myself in pop culture; I also love music and dancing and singing in the kitchen with Will and sometimes Colin and this is where I seem to spend a lot of my time. I love being around my extended family and wish I could spend more time with all of them. I hope to travel more one day and visit some particular family members my heart longs to see. For now, social media and technology are filling that empty space.

This blog is going to be more of my writing and less photos, though I'm sure I won't be able to resist posting photos and videos every now and again, especially since I've recently been blessed with an iPhone and have all this at my fingertips. Growing up I loved journaling and writing, though it was more about my daily life and feelings than any creative type stuff. Being a mom of young children, I feel like a lot of myself has been put on the back burner and lately I've been yearning for an outlet for all these thoughts and feelings. I'm doing this for myself too and am rather excited! Ideas are popping into my head and I'm trying to keep up. This is going to be good.

Welcome to Colorful Colorado with our gorgeous blue skies and summer breezes; welcome to my new blog. Thanks for visiting and come back often.