Saturday, February 19, 2011

The Good, the Bad, and the Ridiculous

This morning was a pretty good one for Boo and I. The first day in a long while that we didn't have to wake up by a certain time to get going somewhere. We stayed in our pajamas till 10am. We were low key and fun. I hated having to take him to Mammo's house. He transitioned well and had a great day with his Mammo. They even went to McDonald's for a dinner of "chicken and fries." On the way home he requested to stop and visit one of his great grandmas. They had a pleasant visit and he enjoyed playing with her little dog.

Meanwhile, back at the convenience store, I was having a day from......well, a bad day. We were insanely busy and I had an encounter with a customer who was screaming like a lunatic and cussing me out all because her husband couldn't figure out how to operate a gas pump. It was all I could do to keep my cool. All night I just wanted to get home to my sweet Boo. It was a terrible work day.

Finally 10 o'clock arrived and so did the third shift replacement. I made a hasty exit and headed home. I found my Boo playing and laughing and having fun. Mom gave me the day's report and said her goodbyes. Shortly thereafter my sweet little man melted down into a screaming crying wailing kicking sobbing fit throwing mass of sadness. It all started when he asked to play PBS Kids on the computer and I told him that it was too late. Then he wanted to watch a movie and got the same response. He just could not let go of the idea. He tried every trick in the book. Begging, pleading, crying, bargaining, and all the rest. I tried to move on to putting on pajamas and met even more resistance. He entered full on tantrum mode. He refused to wear pajamas, and threw a gigantic fit. It was all I could do not to react in kind. My reaction was to yell, punish, threaten. But I know well from much experience that those things only serve to ratchet up the intensity of a fit in progress. Only calm and composure together with time can quiet the storm. Several time outs later we finally managed to get his pajamas on and he aquiesced to the idea of going to bed. But he insisted on sleeping in "the big bed." (in other words, Mommy's bed) This is not a habit I wish to start. Instead of the sweet cuddle time we usually share at night, this was a tense and unhappy bedtime with an unhappy boy. Once he settled I told him "I love you" and he replied "no you don't."

He is finally sound asleep and I will be soon too. Some days it just doesn't pay to leave the house.

Sunday, February 13, 2011

Charitable Giving

This morning at church Boo decided he would like to help out with the offering. Typically in our church the elders pass the collection plates through the congregation while a soloist sings or plays a song. When they have finished, two elders stand at the back of the santuary till the solo is over, then they and two of the Sunday School children carry the offering plates to the front and give them to Pastor, who then places them on the alter and the elders and children return to their seats. The Sunday School teacher had told me that Boo had expressed his desire to help today. It helped that my dad was one of the elders who was carrying the offering today too. So when they stood at the back of the church, I asked Boo if he still wanted to help.

Before the offering began, Boo had taken one of the communion cards and a small pencil from the pew and was writing on the card. He had told me "I'm writing a test." (This is from his Franklin video, when Franklin and his friends have an important spelling test. Instead of saying they "take" a test, they say they are "writing" a test.) As his Grandpa encouraged him, he sheepishly left the pew and approached Grandpa, the other elder, and Susan (a middle school aged girl from Sunday School, whose name I changed for privacy). As Grandpa prompted Boo to hold one of the collection plates, he was still holding the pencil and the "test" so he simply dropped them into the plate before taking hold of it. Grandpa then explained that Boo was to follow him to the front of the church where they would give the plates to Pastor. I watched this exchange with teary-eyed expectation and joy. Watching my son learning to serve God, even in this small way, touched my heart.

When the solo ended, Grandpa and the others headed up the aisle and Boo trailed behind, making his own pace. About halfway up the sanctuary he took a sudden burst of speed, eliciting quiet giggle from the congregation. Arriving at the front, he watched Susan place her plate in the stack with the others, then he placed his plate in the stack as well. At that's when it all went south. Before he had the change to snatch his precious "pencil and test" back from the plate it was whisked away and he protested as he watched the elder hand it over to Pastor and Pastor carry it to the alter. Grandpa gently turned him back toward the sanctuary and my heart broke as I watched his sweet little face crinkle up with heartbroken tears. He walked dejectedly back to the pew where he fell into my arms and began to sob loudly and inconsolably. "I want my things back! I want them BAAAACK! But I NEEEEEED them!" On and on and on he cried, no matter what I tried to say to comfort him. He would have no part of a new card and a new pencil. He needed THOOOOOSE ones. Everyone was taken aback. The rest of the congregation had not seen what took place at the back of the church and they thought he was demanding the money back from the plates. I was certain that no one could even hear the prayer that Pastor was saying.

I finally took my heartbroken boy out of the sanctuary and out to the foyer to try to calm him down. After he found the words to talk about what had happened he began to settle. By the time he was feeling well enough to return, everyone was leaving. Church was over. We weaved our way back inside like salmon swimming upstream so that we could go back and get out belongings from the pew. Just as we ducked inside the sanctuary, I looked up to see dear sweet Susan approaching with a big smile.......holding out the cherished pencil and test for Boo. He was elated! He was so thankful, and he told me with great surprise "He gave me my sings back!" (Boo always confuses gender pronouns) It was then that some of the people around us came to understand just what he had gotten so upset about. Several different church members praised him on a job well done, exchanging high fives and "knuckles" (fist bumps).

If I had searched high and low, near and far, I don't think I could have found a more perfect church home for me and my Boo. These warm and wonderful friends never miss a chance to put an arm around my shoulder, offer assistance, provide encouragement, celebrate improvement, and just generally make us feel welcome and loved and valued. I haven't even shared the news of his diagnosis except with a couple people. Even so, from day one they seem to have intuited our needs and endeavored to meet them. I love my church. I love my God. I am so thankful that the boy I love is learning to love them too.

Friday, February 11, 2011

Thinking Like an Autist

I have been the Mom-NOS blog almost obsessively lately. It is so insightful and amazing. I am especially in awe of the way she is able to explain her sons echolalic speech and figure out what he actually means when he is "scripting." She is really able to climb inside her son's mind and see things from his perspective. I am focused on learning how to do this for Boo. Boo's impairments are vastly different from Mom-NOS's son Bud, but I am often struck by the similarities in the way they seem to think.

I have been pondering some things that seem to challenge Boo. Sometimes it is SO HARD to figure out what behaviors are based in simple defiance and what behaviors are born from a genuine inability to understand what is expected of him, or a genuine inability to comply. For example, whenever we go out the door to get in the car and go somewhere, Boo seems completely unable to walk directly to the car. He must take a long, meandering, circuitous route that frustrates the daylights out of me. He has always reviled the idea of holding hands while walking and trying to get him to do so only ends up in a battle of wills with a screaming, pulling, crying child. He also hates for me to put my hand on his shoulders to direct him. I try to remember to always talk to him about it immediately before opening the door to go out. "Boo, we are going to go out the door and walk straight to the car. We are not going to walk through the grass (or snow, or parking lot, or whatever the case may be). "Stay with Mommy" is completely ineffective, as is "stay on the path." This plays out at home, at Mammo's house, and at school on a regular basis. In the past I have treated this like a simple behavioral issue, using discipline and positive reinforcement to try to achieve the desired behavior. But more recently, I starting to think that this is not where the problem lies.

At school, when it is time for dismissal the teacher leads the children outside and has them line up and stand up against the wall of the building. There is a large section of concrete in front of the building and then a gravel parking lot. The parents park directly in front of the concrete and the children are dismissed one at a time by the teacher as she sees that their parents have arrived. Usually I am among the first to arrive and park directly in front of where the children stand. When Boo is dismissed, he walked straight through the gravel to meet me beside the car. Now, it is important to interject here that one of Boo's most persistent issues is his strict adherence to routine and especially to routes. Once you go someplace one time, the route you took the first time is the route you must take for all of eternity or the earth will fall from its axis. Or so you would think judging by his reaction if you take what he deems to be a "wrong turn." When you enter a building you must leave through the same door you entered. Places where this is not allowed are especially difficult for us. Keeping this in mind, envision a recent day when I arrived at the school to find the parking lot full and had to park all the way on the south end of the gravel lot. On the south side of the large concrete area is a sidewalk leading over to the new addition to the building and incidentally, to my car that day. When Boo was dismissed he was told to walk on the sidewalk. He showed no sense of registering this instruction and took off at a quick pace toward me with an ear to ear grin, as he does each day. But instead of being allowed to run into my arms for a big happy hug, he was called back by the teacher. He completely ignored her and kept running for me. She followed after him and took him by the shoulders and returned him back to the starting point to make him do it as he was directed. She repeated the instructions that he must stay on the sidewalk. Looking confused, he said ok and walked straight across the concrete into the gravel lot. She came and took hold of him again, turned him around and marched him to the start of the sidewalk and announced "we're going to get this right" in a rather gruff tone. When she turned him back toward me, I saw huge tears welling in his eyes and his chin quivering. As soon as she let go of him he walked slowly toward me, wailing the most heartbroken cry, tears streaming down his cheeks. I picked him up and he cried out "I don't LIKE school!" I tried to comfort him and he continued to cry in the car as we drove toward Mammo's house. Now I know my son. He is very capable of turning the tears on and off when it suits his purpose, as most children are. But these were not crocodile tears. I really think he genuinely did not understand what was going on and why.

Similarly, when we leave my mom's house to go home, he insists on walking across the driveway to visit the Christmas tree decoration and Santa, then walk on the concrete blocks, then meander around the circle drive and make his way back toward the vehicle. I know this doesn't sound like much of a big deal, but often I pick him up quite late after work and the temperatures are frigid and the wind is howling, and the driveway is snowy or muddy, and well....I just need him to go straight to the car! But the maddening thing is that when I get onto him and tell him to walk straight to the car now, he insists with great intensity that "I AM." What's a mom to do with this? Does he really just not understand the directions? Does he not know what the concept of "straight to" means?

So I am thinking up ways to work with him on the concept of going "straight to" something. I will disguise it as a game, and I am thinking I will be using his love of making footprints to make it fun for him. It's still in the works in my head, but I hope it will end up being helpful. I can't stand broken hearted tears!

Thursday, February 10, 2011

Boo Speak

Boo speaks quite well. He speaks plainly and enunciates well. His syntax is usually as accurate as a typical child. He loves to talk and does so all day long. So I am in awe at how consistently I find myself "translating" him for others who aren't around him very often. It baffles me how people don't understand what he is getting at. I wonder if they are just dense or if I have become fluent in some esoteric language without realizing it. I can't explain it. Sometimes I wish that our days could be video taped so I could review and analyze them after the fact like a coach after a ball game.

There are a few unique turns of phrase that I can identify. They are quite witty in fact, and usually understandable as well as adorable. For instance, "can I wear my belly" means can I leave my shirt off. "Can I wear my legs" means can I leave my pants off. Coming home late at night, "can I lay in these" means I'm too tired to change into my pajamas, can I leave my clothes on? "Drizzling snow" means snow that is flying around in the air and blowing into his face and eyes. (which he hates)

Often times he seems to be carrying out a very intelligent and insightful conversation, but if you spend most of his days with him you realize that he is acting out one of the shows he watches on tv or video. He has a nack for memorizing large chunks of these shows including every last word of narration. Sometimes he will use concepts or parts of phrases or ideas from shows and connect them with reality. One of my favorite examples of this was when he injected the concept of a hypothesis from Dinosaur Train into a family holiday dinner by announcing at the table, "Grandpa's a boy, but that's just a hypothesis."

Tuesday, February 8, 2011

Thanks a lot, PBS kids!

Boo spends a lot of time watching "kid shows" on PBS kids. Admittedly, probably more than he ought. We try to curb it, some days more successfully than others. As a result of his love for the tv shows, he has also come to love He navigates it as though he designed it. A few months ago he found a section called pbskids play, which was a type of educational program teaching preschool skills. It was quite a nice program really. He enjoyed it and learned a lot. The problem was a free trial. You guessed it. The trial is over, and when he tried to play it tonight, it wouldn't let him in without signing up to pay a monthly fee or buy it outright. Not the least bit something I can afford right now, and it led us into a MAJOR meltdown! I haven't seen one this bad in a loooooong time. It was ugly. Frazzled the very tip of my rope! The extreme heartbreak at the loss of the pbskids play game led to a tantrum over my refusal to allow him to have his "bink" before bedtime.

I have been trying to get rid of this bink for a long time. He is just soooo darn attached to it and I hate how it breaks his heart when I even hint at the idea of trying to sleep without it. I have finally gotten it whittled down to where he only gets it while he is in bed. My theory is that as soon as he falls asleep and relaxes it falls out of his mouth so it can't be doing THAT much damage, right? Well, I don't know, but that's where we are at right now. And it is SO stinking easy to make special excuses and allowances for times when he is the most stressed and upset and can't seem to self soothe......but I really MUST stick with this bedtime only rule. For his sake and for mine. If I give in even a little I loose all credibility in my insistence that bink is for bedtime only. So you can imagine the EPIC fit that took place in my house tonight. I had a bit of a meltdown myself.

In the end, I finally managed to convince him to allow me to put on his pajamas and put him to bed. I laid with him. We snuggled. We said our prayers. I rocked him and he asked me to sing "The Boosie Song." It was a very sweet end to the day. But less than 30 minutes later he was up out of his bed telling me "Mommy, I can't sleep." I took him back to bed and laid down with him again. I told him I love him and what a good boy he is. He was softly mumbling something unintelligible. Then suddenly he announced "I still can't sleep." A lightbulb went on. The entire I can't sleep routine was from an episode of Dinosaur Train. When the Pteranadon family went on vacation, Tiny couldn't sleep in a strange place and kept getting out of bed. Boo was acting out the episode down the very last word. I explained to him that we were not going to act out the Dinosaur Train tonight. He was not going to pretend to be Tiny, he was going to lay in his bed and go to sleep. He sighed, "ok, I will just be Boo."

So now my little one is sleeping soundly and I hope to be doing the same very soon. There is never a dull moment in this family!

Saturday, February 5, 2011

Dawn of Day 2

I had a fitful night filled with nightmares. Boo seemed to have a couple of them too. One had him up out of bed and talking, but very confused, anxious, and unable to complete a sentence. He was restless and wouldn't stay in my lap or in bed. He was pacing in small circles, seeming distressed and muttering things like "um" and "I need" repeatedly without ever finishing the thought. At one point he looked right at me and asked "where is my Mommy?" I don't think he was actually awake. He also kept staring at the glowing numbers on his bedside clock. I finally got him settled back into sleep. Several hours later I was awakened by the sound of his voice, sounding scared, "I need my Mommy!" I ran to his room to find him sound asleep. Looks like yesterday took quite a toll on our little guy........I know it did on his Mommy.

I jumped online today and began again seeking information, help, clarity, understanding...anything that would help me feel less like I am in a free fall. I stumbled on a list of blogs by parents of kids on the spectrum. I scanned down the LONG list till one caught my eye: "Mom, Not Otherwise Specified." I know immediately that this woman had the type of thinking and humor that would just fit with me. I clicked on the link and began reading. It didn't take long before I was in tears. Not over anything she said, really. Just everything hitting me again. I really am a member of this club. This is going to be my life. This isn't something we fix like an ear infection, and it isn't something that just runs its course like a cold.

I determined that I want to make a list of links on this blog to all the ones I find that are helpful and/or informative. Or even that are comforting or entertaining. So that is coming soon. Of course, Boo is asking "is it my turn on the computer now?" The boy can navigate like he designed it! I also noticed on the other mom's blog that she had a few pictures on there that her son had taken. I thought it was a cute idea, as my Boo is quite the little photog as well. He will snatch my digital camera at every opportunity and takes quite good pictures actually. He tends to catch me with terrible bed head though. *wink* So that is probably coming soon as well.

There's not much else to tell, so I guess it's back to our originally scheduled lives! God Bless.

Friday, February 4, 2011

So, Let's Begin in the Middle!

It is Friday, February 4, 2011. Today we received our diagnosis. PDD-NOS. (Pervasive Developmental Disorder-Not Otherwise Specified) It's a head scratcher for sure. Kind of....huh? What's that mean? I thought it might be a good idea to begin a blog and keep it as a way to track our questions, answers, struggles, victories, and blessings. I invite you to bookmark and follow. But there is just SO MUCH story behind us, that it is overwhelming to think of explaining it all. So I think the best thing to do is just start in the middle, and catch up as we go. Hope I don't get you lost in the process.

Our son is 3 years 9 months old right now. We call him "Boo." We were very blessed to have the opportunity to be included in a free clinic with a developmental pediatrician. She has given Boo the diagnosis of PDD-NOS. Like most parents of children with these type of struggles, I had done my homework loooooong ago, trying to get a handle on my uneasy feelings concerning my son. I had read about PDD-NOS, but hadn't really paid close attention to it. The description we got from Dr. K was vague at best. I thought I understood it till I started making phone calls and trying to explain it. So when I got home, of course I jumped on google. This of course, left me even more confused than before. The best way I can think to describe what this "label" means is 'Something's up, but it doesn't fit in any of our categories.'

One of the most striking things I read was from the Autism Speaks website:
"Like other parents with children on the spectrum, you will face many challenges, starting with the incomprehension and insensitivity of others unfamiliar with your situation. They may think your child is "misbehaving" and, consequently deem you a parent unable to "control" him. This may be especially true because PDD-NOS kids don't fit into the more easily identifiable forms of autism spectrum disorders. Ignorance can bring out the worst in others, and sometimes, when they're not privy to your child's issues (or simply don't understand them, or won't accept the diagnosis, as happens in some families), they may be more judgmental."

Yeah, tell me about it! I have encountered that with other parents, online mothering forums, family members, and random strangers in public all too often! And it constantly makes me second guess myself. Am I really being too lenient? Is he getting away with just being a brat? Is this a discipline problem? If anything, I am glad to have someone who knows what they are doing tell me that this isn't all in my head! I'm not just making excuses for an ill-behaved child. A relief on the one hand, but on the other......this isn't just going to go away with better parenting skills.

For now, I am just trying to remember that nothing has changed. My son is the same boy that he was this morning, and the morning before that, and the one before that. He is the same little guy that was created by God for a purpose, and I am the same mother who was given the privilege and the responsibility of helping him fulfil it. Having this diagnosis is a tool I can use to open doors of assistance to do just that.