Sunday, May 22, 2011

More Than Meets the Eye

A few days ago Boo caught me watching trailers for summer release movies on the internet. When he walked up I was watching one for Transformers Dark of the Moon. He was very interested in what he was seeing. I was concerned that the dramatic fighting sequences would be too much for him. But he did not seem bothered. He asked a lot of questions and we talked a lot about what the transformers are and what they do. He asked to watch the trailer again. Then he noticed the thumbnail below for the Cars 2 trailer and asked to see that. We watched both of the Cars 2 trailers and talked about that.

About a month ago my dad had told me that Cars 2 would be coming out in June and said that he wants to take Boo to see it. I thought that sounded great, as I had already decided that I would like to attempt Boo's first movie theatre experience this summer. But I was concerned as to how well my dad would handle it. I have been discussing this with my mom and we decided that we need to start discussing it with Boo. We haven't really learned how to write social stories yet but we hoped that we could prepare him for what to expect just with discussion. So when he was all excited about the new cars movie, I decided to introduce the idea.

We talked about what a movie theatre is and what we do there. We talked about the fact that Cars 2 will not be available at Walmart. It will only be at the theatre. We talked about the fact that it will come to theatres on June 24. Boo was very excited. Every day since that he has asked me immediately upon waking if it is June yet. He showed both of the Cars 2 trailers and both of the Transformers trailers to his Mammo and told her all about them.

At church today Boo decided to join the children with Pastor up front for the children's message. He insisted I go with him as usual. The message was way over Boo's head, but he sat quiet and polite (mostly) while Pastor spoke. At one point, he whispered to me, "if I say 'excuse me' will it be my turn to talk?" (we have been working very hard to curtail his habit of interrupting) I told him that it would not, and that he must wait till Pastor finished the message and then he could talk to him. As soon as the message was done and the children were dismissed back to their parents, James said "Pastor?" The entire church sat silent and Pastor leaned down toward his little parishioner. "Yes, Boo?" And then Boo surprised me by suddenly launching into a description of Transformers, who they are, what they do, what they are called. I was trying to steer him away but he would not be dissuaded. It can be near impossible to stop him in the middle of one of these type of speeches. Somehow, perhaps by divine intervention, Pastor managed to say exactly the right thing. "Can we talk about it after church?"

All of this, of course, was broadcast for the congregation via Pastor's lapel microphone. We returned to our seats amid stifled giggles and grins. Boo was (mostly) good throughout the rest of the service. The instant that church was over, he just couldn't get to Pastor fast enough! He had not forgotten, and he was anxious for his promised chance to continue the discussion. When we finally got through the line and it was our turn to shake hands with Pastor, Boo gave quite the informative speech. He told Pastor that the good Transformers are called Autobots, and that the bad ones are Decepticons. You just never can tell what's going on inside that little mind.....

Monday, May 9, 2011

Four on the Floor

It's been quite busy around here lately! A class field trip, Easter, a friend's birthday party, a church carnival, daddy being home for a week, and Boo's birthday. There are so many things I have longed to share, but haven't found the time to get my thoughts out. The birthday was a huge success! It was the first time Boo had a party with his friends. We had a backyard bash, and the day was a gorgeous as could be.

There were only two hitches. First, Boo refuses to believe or admit that he is now four. He insists on staying three. He is not motivated by the idea of being bigger. He wants to stay little and he says he likes being three. While I relish the fact that my little guy isn't in a hurry to grow up, facts are facts. But he keeps insisting he is three. LOL

The second problem involved his birthday present. Last year, he got his first bike, a 12 inch one that he adored, but which was causing him to practically eat his knees this spring! We got him a new 16 inch bike and he knew it was coming. He was so excited to get it, the very instant we gave it to him he insisted on going for a ride. He also received a new helmet and knee and elbow pads. He readily put them on, which surprised me. I had never required it of him in the past, and as a general rule he hates things on his head. But he geared up and we headed out. When Boo goes bike riding, he has a very specific path he takes. Any suggestion that we vary the path is met with extreme resistance. Once I got him to go half a block out of route at which time he had a total meltdown and insisted on going home. Later when he was more able to discuss his emotions he told me that he had been lost because he didn't know where he was. The route he takes is not circular. We go across town and down a certain one way street, and back the same way. On his birthday, we went all the way to the end of the one way street, turned around, and got about a third of the way back when the problem started. Having ridden the bike about 40 minutes, he suddenly realized that both of the training wheels on the bike did not turn at all times. Of course, that is exactly how they are designed to work. As he leans to the right or left, the training wheels support him and keep him from falling. But in Boo's mind, wheels are made to spin. And if a vehicle has four wheels, then all four wheels must spin. He has rejected toy cars in the past if all four wheels did not spin freely. So the fact that the training wheels "didn't work right" rendered the entire bike un-rideable. I reasoned, I bargained, I begged, I cajoled, I threatened, I feigned walking away, nothing worked. My Boo sat motionless and sobbing in despair, refusing to pedal the bike. I reached my breaking point. I turned into Mommy Hyde. I yelled, I was angry, I threatened to take the bike back to the store. I ended up pushing him on the bike all the way back home. You talk about a LONG walk! By the time we arrived home, Boo wailing and me seething, he was begging me to take his bike back to the store. I took him into the house, and eventually was able to calm both of us down enough to comfort him. I told him I would ask Daddy to "fix" his training wheels so they would work right and he said that would be acceptable. I left him with his great grandma and I went out to the garage. It didn't take long before I collapsed into a sobbing heap of bitter desperate tears. I cried to my mom and my husband, told them how horribly I had behaved toward poor Boo. How much I hate myself when I treat him that way. How very hard it is at times to remember that it's not his fault, he can't control it, and he's not just being obstinate. It really does bother him THAT much. I felt like the worst mother in the entire world. My husband and I wept in each other's arms, then he got out his wrenches and lowered the training wheels as low as they would go. Later that afternoon when everyone was more relaxed, Boo agreed to try the bike again. The wheels were low enough that they at least appear to him to be spinning at all times, and he is thrilled with the bike once again. Of course, now my mantra is a constant reminder to look ahead of him instead of staring at the training wheels to make sure they are spinning.

Friday, April 29, 2011

Strict Constructionist

I live with a child who is a stickler for the rules. This would be super great, if only it were MY rules he is so insistent on following. But the rules Boo must follow, and which he insists we ALL follow, originate in his own mind. They are often things that seem so random or arbitrary or illogical to the rest of us, but for Boo, they seem to be something he NEEDS in order to cope with the world and keep himself on an even keel. Regulated, as we sometimes call it. Some examples of Boo rules are, only one sound may be happening at a time. For example, if he is watching a movie, I can't have the radio on in the next room. Bananas must remain whole or they are inedible. If one breaks, or heaven forbid you cut it, he becomes very distressed and refuses to eat that one, or any others. Only one food may be offered/eaten at a time. The route we drive both to and from Mammo's house must be exactly the same each time. There are a myriad of such rules that we must pay attention to.

You can imagine how someone who insists on strict adherence to order and sameness can be challenging to live with. Sometimes life just throws you a curve ball, and there is nothing you can do but adjust how you hold your mitt. This is very hard to teach a child with autism. Recently, the county began working on resurfacing the highway between our house and Mammo's house. The appearance of orange cones and strange signs along the road was uncomfortable for Boo, and he needed me to talk it through a lot so that he could feel safe and comfortable. Then the cones moved to the middle of the road, and we were required to drive only on the left lane. That was very difficult to come to terms with, but he finally did. Low and behold, just a few days later, the right lane had been ground off and they began work on the left lane. Aside from this being highly annoying to ME since there is no way to drive down the highway without cars in front of you spraying rocks up on your windshield, it was very disturbing to Boo, who had only recently dealt with the idea that we were only driving on the left lane, and now we are only driving on the right. Not to mention, the westbound traffic has these rules, but the eastbound traffic does not. Boo does not like this construction zone, or it's cones, and especially not its strange and (to him) confusing rules. When he feels distressed, he shows it by talking about what's bothering him. A lot. Incessantly! So there has been a lot of talk about cones, and workers.

Today as we entered the highway, a large dump truck entered also, but it proceeded to drive down the forbidden side of the road toward the construction workers. This sent Boo into a tizzy! That truck was NOT supposed to be on THAT side of the road! It took me a while to convince him that the truck was driven by one of the workers and that it was ok. It was crazy windy here today, and several of the orange cones had been blown over onto their sides, pointing into our driving lane. This also upset the boy, as the perfect row of identical cones set up at regular intervals was disrupted by the occasional fallen cone. He asked me what happened and I told him the wind blew them over. He lamented, "But I didn't WANT that to happen!" Soon he spotted a workman up ahead and he concluded that the worker was going to pick up the cones, so it would be ok.

Then, something magical happened! We passed by a big machine that was grinding up the road and he asked me what it was. I told him "that's a paving machine." Now, in the strictest sense, I was not correct, since this machine was grinding off the old pavement, not laying down new. But it was the first thing that came to my mind. And oh, was Boo excited! He announced, "YEAH, JUST LIKE BESSIE!" (Bessie is the name of the paving machine in the movie Cars) He began asking me "what is the name of that machine? What is the name of the machine that's on the real earth? (meaning, the real one, as opposed to the one on tv) I told him I didn't know and asked what he supposed the name of the machine was, and he answered "Bessie." He was so excited about Bessie that he forgot all about his concerns over the construction zone. It's the little things, ya know?

Sunday, April 24, 2011

New Sandals

I am breathing a little easier these days. I am back down to only one job. Spring is in the air, bringing with it lots of chances to run and play outside. My flowers are blooming and the garden is ready to be planted. It's my favorite time of year!

We have been very busy lately too. Boo's Daddy was home unexpectedly for a weekend recently which thrilled Boo right down to his toes! We also went on a field trip to a local farm with Boo's preschool class and attended a family fun night at school. Family fun night included dying Easter eggs and an egg hunt. It was great fun and Boo had a wonderful time, but it was also very overwhelming and overstimulating. In classic Boo fashion, he maintained his composure very well in the moment and saved the meltdown for Mommy.

We also had some company this weekend. A dear friend from my childhood, Ryan, whom I had not seen in person in almost 20 years came to stay with us for a few days with her daughter Roo. Little Miss Roo is a fourth grader and she is amazing! She bonded with Boo right away, and spent the entire weekend seeking to learn as much as she could about him. She asked some of the most insightful questions I have ever heard. She connected, she was intuitive and just amazing.

Boo is making strides toward resolving his difficulties with toileting independently. Unfortunately, this progress brings about a whole new set of difficulties. I am hesitant to post any more information than that in respect of Boo's privacy. I like to imagine that this blog will continue as he grows and that he will someday be able to read it and look back on his childhood from another point of view. I also like to imagine that he will be happy with what I write about him and that he will not be embarrassed.

Boo's problem solving abilities are improving also. Any time he is denied something he wants, he insists on knowing why. Once you tell him your reasoning, he will set about defeating your argument. You have to be very careful what you tell him. For instance, a while back he asked if he could skip the last step going down the basement steps. The steps end with a small landing and then a concrete wall. If he were to loose his balance and take a tumble, he would meet that wall head first. I told him no, he could not skip the last step because if he did he might hurt himself. He waited till I wasn't looking and went ahead and jumped the last step, then proudly announced that he had done so and had not been hurt. Therefore my reasoning held no weight and he now assumed he had automatic permission to go ahead and skip the last step. He is smart, my little Boo. He thrilled my heart today when he was begging for more treats from his Easter basket and I said no. He announced, "Let's make a compromise" and then he proceeded to propose a compromise and he ended up receiving two bite size mini oreos. A born negotiator, my Boo.

I think my favorite story recently was from last night. Boo was telling the Easter story to our guests, using some pictures from a gift that was given to him at Sunday School. He was showing each of the pictures in the story and linking them with the narrative. "Jesus was riding on a donkey, and then he went into a house that was orange and had this kind of door. He had a special meal with his friends. Then he was praying. They hanged him on a cross on Good Friday and he died. Then they moved away the big stone and he came to life and he got some new sandals.".......Amen, Boo. Amen.

Sunday, April 10, 2011

Balancing Act

Last night after Boo went to bed, I spent some time reading through the MomNOS blog. It been a favorite of mine for some time, and I am in the process of reading it from beginning to end. One post in particular really resonated with me. It was about the importance of sensory integration activities, and the signs that the child's sensory needs are not being met. I gave this a lot of thought, especially the concept of "Push, Pull, Lift, Carry" that was mentioned as being the keys to sensory regulation. I recognized that Boo has been under-stimulated sensory-wise the last several days. My mom has described this as "it was a rough-and-tumble day." I have noticed Boo having decreased ability to self-regulate, to attend and focus, to be still, and to listen and comply with requests or instructions. He has also been climbing into bed with me in the middle of the night, pushing so closely up next to me and even sticking limbs under my body, that I nearly end up shoved out of bed. This was something that was mentioned by MomNOS as well. So today, I focused on trying to get those needs met. Before church I asked Boo to carry his bag across the parking lot. The Boo bag is a large canvas bag with his name embroidered on it, which holds spare clothes, snacks, toys, books, and the requisite disposable cup in case of a public bathroom emergency. It is quite heavy and he enjoys carrying it on his shoulder just like Mommy. He had a very hard time being good during church. After church I took him to Grandpa's house to play while I went home to mow the lawn and then went to a mother-daughter program at church. When the weather is nice he likes to spend most of his time at Grandpa's house outside on his tricycle, riding all around the yard. The terrain is very irregular and I figured the activity would be good for his sensory integration. Hours later we went home and Boo watched a video for a while and ate some supper. Then he was climbing all over the furniture, hanging upside down, acting rambunctious. He got out his "Mr. Blue Ball," a large blue rubber ball that my mom got him so he could use it to sit on while watching TV to help develop his core muscles and balancing skills. (something she read in a book on sensory integration dysfunction) He was enjoying sitting on the ball, but quickly got out of control with bouncing on it and then kicking it in the house. Desperate to harness his energy, I decided to pull out something we hadn't tried in probably nine months. I got out the sit-n-spin. He was excited about it at first, spent a while using it appropriately and really enjoyed it. I took a picture of him on it and he noticed me doing so. That distracted him completely. He came up to me and raised one foot in the air, asking me to "take a picture of my stinky foots." I did and showed him to it, which delighted him. Then he got on all fours and put his head down and asked me to take a picture of that. I remembered that his teacher had told me last week at parent-teacher conference that he would not attempt a forward somersault. I took the opportunity to work on it in a low pressure environment. I helped him get into position and showed him how to push over. He thought it was fun a few times, then he wanted to watch me do it. Believe it or not, at my age I can still do a somersault! But after three, I dared not do it again. For whatever reason, Boo had decided to go down the hall and hide in his bedroom with only his head sticking out into the hall to watch me. When I told him I was done somersaulting, he ran down the hall full speed and crashed into my open arms, knocking me backward. He often does this same activity, only crashing full speed into the couch instead. I decided to use the activity that seems to fulfill a sensory need for him. I gathered up pillows and piled them on the floor behind me and then held two large pillows in front of my body and head and encouraged him to run into me with the pillows. He really embraced the game, squealing with sheer delight as he ran, and laughing with joy as he pushed me down. We played this game for probably 20 minutes. Then he decided it was MY turn to run, and he positioned himself among the pillows, put two in front of himself, and giggling, told me to "go." I jogged down the hall, fell to my knees in front of him, and used my arm to push him backward into the pillows. When he tired of that activity, he just went craaaazy! Throwing hotwheels, spinning the sit-n-spin with his hands as fast as it would go, waving the sit-n-spin's "steering wheel" around in the air like a magic wand, running, crashing, etc. I tried to get him to take a bath, which is an activity he loves and usually relaxes him. He insisted he did not want a bath, but he did ask for some computer time. By then it was 8:00 and I intended to have him in bed by 8:30. I was hesitant to allow computer time because it is so hard to transition away from it when time is up. But I glimpsed an opportunity and grabbed it! I told him that he could have 30 minutes of computer IF he would brush his teeth. Tooth brushing is one of our biggest fights. He HATES it with a passion. He doesn't like the way it feels. Especially on his upper molars. There have been a few small seasons when it wasn't much of an issue. He still didn't like it, but would allow me to do it. But whatever technique seems to be working will wear thin in just a few weeks and we are back to an ineffective wrestling match. Because of this, I am ashamed to admit how poor of a job I have done at insisting that it gets done. I was pleasantly surprised when he ran to the bathroom and pulled his toothbrush out of the drawer. I had bought him a Thomas SpinBrush a while back. His occupational therapist had suggested a vibrating toothbrush to "desensitize" him to brushing. He took out the brush and did a fairly good job at cleaning his teeth. He was hesitant to do his top molars. Since he was so agreeable, I asked if I could help him, and he let me brush his teeth also. When I did it without pushing the button, he requested that I "tickle" his teeth. I got a good brushing done on the bottom and the fronts, but when it came time for the top he became antsy and implored "not on my skin!" When computer time was up, I was shocked by the absolute fit that ensued. Tantrum doesn't even begin to cover it. I have not seen a meltdown of this magnitude for months! I had been in hopes that all the sensory integration activities would help him to regulate and to calm. But just the opposite happened. So I am thinking that perhaps I overdid it. Perhaps it was too much in one day. Maybe I swung the pendulum to the opposite side, with the same result. I will have to work at finding that delicate balance between under-stimulated and over-stimulated.

Tuesday, April 5, 2011

Great Strides

We have not posted here in a while. Busy busy busy at our house this spring! The weather is beginning to warm up and we have been able to spend more time outside lately, much to Boo's delight. He loves playing in the backyard with his dog. We also tilled up a garden spot this year and have been working the soil in anticipation of planting time. Boo likes to use the rake to pull the dirt around. He also likes to throw the dog's ball into the garden despite repeated warnings not to do so. One day he ended up having the ball taken away and put up in the shed for that reason. Now, I did this to show him that I meant what I said about not throwing the ball in the garden (because I don't want the dog in the garden) but there were still two other balls just like it elsewhere in the yard for them to play with. Silly me, I thought perhaps Boo would go get one of them and continue playing. What was I thinking? He fixated on the one that was taken away. He cried, wailed, begged, pleaded, bargained, apologized, anything he could think of to get me to give him back the ball. I stood my ground. That's when the little squirt got clever! Our Boo is smart, oh so smart. I have my work cut out for me as he gets older. I was busily raking chunks of unwanted grass out of the freshly tilled garden and I THOUGHT that Boo was playing happily with the other two balls in the yard. One accidentally (or so I thought) ended up going over the fence into the neighbor's yard. I warned him to be careful because we cannot get the ball out of the neighbor's yard till we see them again. I went back to raking. Next thing I knew, both remaining balls were in the neighbor's yard, and Boo was reasoning to me that the dog NEEDS the ball that I took away because all his other balls are over the fence. Oh, what pure logic! As much as I LOVED to see his use of logic and problem solving, alas, the rest of the day was spent sans ball for both dog and boy. Two days later when the balls returned, I had to warn him only once and remind him what happened the last time. He quickly moved to another part of the yard to continue playing. Lesson learned, I hope! Last weekend was so wonderful for us. On Saturday Boo and I spent the day with much of our extended family. We joined five other family members on a trip to the big city and shopped till we dropped! It was not Boo's kind of shopping since it involved none of the things he is interested in buying. None of the things I brought along with me to occupy him were helping. Not even the new issue of Highlights magazine, which is usually a hit. He wanted to be out of that cart and running around. I wanted to be enjoying the time with my family rather than chasing down an unruly toddler. All in all, he did quite well, especially considering that we left on this outing at his usual nap time. After several hours of shopping, during which Boo tried to convince my cousin (who is expecting) that "your babies will LOVE this!" showing her everything he could get his hands on, we returned to my aunt's house to spend the evening with family. The house was full and so were the hearts. We had a fabulous barbecue, although Boo of course ate none of it. One of my biggest lifelong goals is to get him to eat a semi-normal variety of foods. That one is going to be a very long road. Sunday turned out to be a phenomenal day. We were up quite late Saturday so we accidentally slept in too late to go to church. We lounged and played in the morning and then went outside to enjoy the record breaking warmth and pleasant sunshine. I decided it was about time to start watering the yard and set about checking the sprinkler system to see if all was well with it. It came on before I expected and before I could warn Boo. One of the things he hates most is having water in his face. He hates rain or snow that is "drizzly" because he can't keep it from blowing in his face. Even in the bathtub we always have to have a dry washcloth handy to wipe his face with. To my surprise, I walked out of the garage to find my boy running through the sprinklers laughing and delighted! Back and forth, back and forth he ran across the lawn chasing the spraying water soaking himself head to toe. He ran up to me grinning and his face was covered in droplets of water that he didn't seem to notice. He ran all over the front and back yards from one sprinkler to another, testing out the spray of each one. I don't know who was more giddy, me or Boo. Later that afternoon, we needed to run to the store for a few things. Because his tennis shoes were wet, he couldn't wear them to the store. Encouraged by the breakthrough of the morning, I brought out the flip flops I had bought on clearance at the end of last summer. Last year we had bought a pair in July that were American flag designs. (He loves the flag) He was excited about them till the first time I put them on his feet. One feel of that plastic between his toes and that was it. No flip flops for Boo, thank you very much! But Sunday I decided to push the issue juuuuust a little. I told him that his tennis shoes were wet and couldn't be worn. (he would refuse them anyway, as he won't wear things even the slightest bit wet) He did not like the idea of the flip flops because there were no socks. I showed him how I wore mine and he was unconvinced. He finally conceded to wear them IF he could wear socks. Why not? I got out a pair of socks and put them on him. But when he felt that bulky bit of sock being wedged between his toes, he thought better of it and opted for "none socks." We put the shoes on him and he walked cheerfully through the grocery store, pushing the cart into things left and right. He also had trouble keeping them on his feet, as he wasn't able to figure out how to use his toes to keep the shoes on. Every few steps one of the flip flops fell right off his foot. But it was still counted as a great victory! Later that day we were in the basement doing laundry and for whatever reason I decided to pull out my elliptical exercise machine and get on it. Boo was intrigued, asking lots of questions. I offered to let him get on with me and try it, but he was adamant he did not want to and ran away from me. A few minutes later, I emerged from the laundry room with my basket of clothes to find Boo standing on the elliptical walking his little legs off. He was SO proud of himself! He continued to return to the exercise machine over and over the rest of the day, and when he finishes he always asks me to check the timer display and tell him "how many numbers did I exercise?" This is another great thing for Boo, as we have discovered that his ability to calm down, be still, and pay attention is greatly helped by resistance activities (lifting/pulling/pushing heavy things, elliptical machine, etc) and by very tight squeezing hugs and deep pressure massage. The fact that he loves this and thinks it a game will serve us well. In the evening we had a cousin over for supper and then Boo invited her to join him in the backyard to play. We all went outside and the flip flops were once again falling off his feet. He soon decided to just leave them behind and play in the yard barefoot. This is the child who will remove his shoes because of one tiny sand pebble or a wrinkle in his sock, and he was running all over the dry crunchy grass that has yet to begin to green up for the spring. I watched in awe. Soon a thunderstorm front moved through and the wind increased dramatically. We played a wonderful game of "basketball" which involved throwing a large ball into the wind and then chasing it down and catching it. I was totally amazed by the end of the day. As I shared Boo's accomplishments throughout the day on facebook, my mom posted "put that boy to bed, my heart can't take anymore!" I wish I could figure out what the magic formula was that led us to such a wonderful day, but it is a tremendous encouragement for us all.

Thursday, March 24, 2011

And Another Thing...

I got another insight tonight. Background: Boo was very hard to potty train! In fact, I was concerned that it might not happen in time for him to begin school last fall. He still refuses to even attempt bowel movements in the toilet. And although he does urinate in the toilet, he doesn't like it. He holds it for amazingly long periods of time, to the point that it concerns us. He also has an extreme terror of public bathrooms. We have discovered that at some times, on good days, we can convince him to go inside a public bathroom and "potty in a cup." Any cup will do, as long as he isn't asked to use the public toilet. I have noticed that the toilet seats that are split in front, not complete rings, bother him the most. In fact, one look at them will usually cause an instant screaming fit. He also has expressed some anxiety about loud flushes.

This brings me to another of Boo's sensory issues. Loud noise. He has a love/hate relationship with loud noise. Some times he loves it, seeks it, creates it. Sometimes it really seems to bother him. He seems to have trouble filtering the relevant sounds out of the background noise, especially in very noisy places like public crowds. He will seem to not even hear me at all, no matter how loudly I call to him. This coupled with his refusal to hold hands (another sensory issue) has caused some difficult moments, to say the least. When he was little, he loved his jack-in-the-box, but he was afraid of the moment that it "popped." He would run out of the room as far away as he could when it was about to pop out of the box. After it was up, he would happily return. He has always hated the vacuum cleaner, usually running to his room and closing the door when I vacuum the carpet. When he plays games on the computer he will sometimes run around the corner to the next room when he encounters a very noisy part of a game. But he will return to play the same game again and again, running away for the noisy part each time.

Today we barely got Boo into a public bathroom at the zoo. He did not like being in there at all. He barely consented to stay in the stall long enough for me to use it. I knew he hadn't gone to the bathroom in several hours and didn't want him to keep holding it much longer. I didn't have a cup with me today, so I offered him one of our water bottles. He agreed to that, and suddenly pulled his pants down in such a way that I knew he was really feeling the need! He used the bottle happily and we got back on our way to the animal exhibits.

We spent quite a bit more time at the zoo after that, then went to McDonald's for lunch, and then Boo fell asleep on the way home. He ended up sleeping about five hours! Holy cow! Even after he woke, he didn't go, didn't go, didn't go. Finally, after it had been around 8 hours since our trip to the bathroom at the zoo, I insisted he go. This began an epic fit. He flat refused, said he didn't need to go, he didn't want to go, screamed, cried, begged. I kept asking him "why" and he could only answer that he didn't want to, or didn't need to. I ended up sitting on the bathroom floor with Boo in my lap, squeezing him in a tight hug and rocking side to side. It dawned on me to ask "what would happen if you did potty?" His answer? "It would be too loud!" Heaven's sake! I had no idea that he was bothered by the sound of using the toilet! I offered him a cup, something that we have never done at home, and he happily filled it, then went on to the next activity. Go figure.

Wednesday, March 23, 2011

Here's the Story

Once in a while Boo has a bout with insomnia. I have never been certain what triggered it, but when it happens he wakes in the middle of the night confused and restless and can't seem to get back to sleep and can't express himself. Recently he had such a night but was unusually communicative. He woke me up by asking "Mommy, are there no monsters on the earth?" I assured him there weren't, but we were up for the next 2 hours. Several times in the day he asked me the same question again. Finally, he began to talk about the monster. He said it was a big monster that ate all the energy and make the lights not work. I recognized this as coming from an episode of the PBS Kids show Word Girl. I tried to reassure him that the monster on the tv is just pretend.

Enter the autistic brain! They think sooooo differently, and that is often a wonderful asset but frequently a difficulty also. I never previously realized how he understands the term "pretend." You see, when we tell him to pretend, or comment on his pretending, it usually involves him imagining the existence of things not seen, or imagining that one thing is actually another thing. For example, pretending his best friend is here and talking to him or pretending that his hand is a mouse. But things that are seen are NOT pretend, they are real. By Boo's definition, visible equals real. Thus, the monster on Word Girl is NOT pretend, it's REAL. There is no dissuading him in this certainty. I tucked that one in my Mommy processor, knowing we would come back to it again.

Today we had a long and wonderful day at the zoo. He was much more tired than he has been in a long while. He slept in the car on the way home, then I carried him to bed when we got home. He slept about another hour, then came out of his room in another stupor, seeming confused as to why he was up, distressed, and unable to articulate what the matter was. He laid down on the couch and fell back to sleep. He slept a long time, and when he awoke, we were talking and reviewing our day. I got out the zoo map to look at. Boo LOVES maps! We reviewed all the things we had seen and done at the zoo, talked about where we had gone after, and that he had come home and slept afterward. Then he gave me some incredible insight!

He began telling me about the "story" that he saw. He said that he was in a story and that when he opened his eyes, the story went away. AHA! I sat with him and began asking questions. I learned that he was in the story and that there were two things that were scary in the story. He said he couldn't remember what the scary stuff was. I asked him what else was in the story and he said there was a monster and a bug. I asked what they were doing and he said that the bug was scared of the monster. He then told me that I was in the story also. I asked him what did I do in the story and he said that I made him scared of the monster and the bug. I asked him if I kept him safe and he said no. He said that he couldn't remember anything else from the story.

So, we had a chat and I told him that sometimes when we sleep, our mind tells us stories and these stories are called dreams. Usually we have good dreams, but sometimes something scary happens and we call that a bad dream. I told him that when he wakes up from a bad dream if he still feels scared he can come to Mommy and tell me "I had a bad dream." He then told me that we don't have any bad dreams, only good ones. We talked about it just a little bit more, and then he wanted to watch a movie. I will be discussing the matter again in the future, namely bed times. I feel very encouraged. Boo's ability to articulate and my ability to listen and think through things his way are both improving and it's giving us much better insight into his mind. It must be tough at times to live in that brain. The more I learn about my sweet boy, the more he amazes me and inspires me. This little bundle of sweetness is one of the smartest and bravest people I know. I work hard every day to be the mom he deserves. I sit now in tears and in awe of the gift God has given me. This little man has the power and potential to impact this world greatly. I pray that God gives me the wisdom to help guide my son to be the best he can be.

Thursday, March 10, 2011

We Interrupt This Regularly Scheduled Wednesday...

Yesterday was Ash Wednesday, one of my favorite days of the year. Work was slow enough that I was able to leave in time to take Boo to the special church supper and Ash Wednesday service. As excited as I was to be able to go, I did have concerns about just how Boo would handle it. As is the case with most kids with ASD, he has a very hard time with unexpected changes in routine. In Boo's memory we've never gone to church in the evening before. I wasn't sure how he would take this since we would be going to supper at church where there was likely to be nothing he would eat, then going to an unusual church service which was not preceded by Sunday School. He handled the supper quite well. He was uncomfortable at first, but once he discovered the saltine crackers he sat down at the table with me and ate. I had the most delicious chicken soup, a ham sandwich and a yummy dessert. He ate saltine crackers. That was it. He wouldn't even touch his applesauce.

He was a little jittery and reluctant to go to the sanctuary at first, but acquiesced once I agreed to carry him. We went in and set our things down and he was playing with his toy cars. All was well at first, until he realized that we had not been to "the eating place." Our church has a special fellowship time between Sunday School and church service where they serve refreshments and give everyone time to gather and conversate. Boo has dubbed this "the eating place" and it is probably his favorite part of the Sunday morning routine. I told him that they don't have eating place on Wednesdays, they had supper instead. He was not satisfied by this explanation and things began to go downhill. When it was time for the imposition of ashes (congregants come forward and Pastor places ashes on their foreheads in the sign of the cross) Boo requested to stay in the pew while I went forward. I had my reservations but he handled it just fine. But when I returned to my seat it didn't take long for him to become very agitated about that "stuff" on my head! He hated it! He kept begging me to clean it off and asking what it was. I couldn't come up with an explanation that would satisfy him. I pulled out my emergency reserve: Reece's Pieces. He settled down just long enough to eat the small amount I had packed for him, and then he began testing my limits. He was trying to play in the aisles, and being generally argumentative and was in constant motion: climbing, kicking, flailing, you name it. He also would NOT stop talking and would NOT speak quietly! I was at my wit's end and sat there silently praying that SOME DAY I will once again be able to actually hear a sermon.

In the midst of this mess, a miracle happened! Ok, "miracle" might be an over-dramatization, but it felt like almost that big of a thing for us. Right in the middle of the service, Boo announced "Mommy, I have to go potty!" I said "let's go!" and we left the sanctuary. I took him into the ladies room, fully expecting a battle. You see, Boo has an abject fear of public bathrooms. He refuses to use them. Especially when they have seats that are split in the front instead of being a full circle. Normally, if he takes one look at such a toilet he runs away screaming. The best we are able to do usually is give him a disposable cup that he can potty in, but I had no such thing with me at the time. I offered to let him stand up to potty and he said ok. But once he pulled his pants down he shocked me by sitting right up on that public toilet as if it had never even been an issue! It was all I could do to keep my cool and act nonchalant. Then he leaned backward just so, and accidentally pottied on his pants a little bit. I quickly reminded him to watch where his potty was going and he did. Then I was really worried! Normally the tiniest bit of wetness on an article of clothing requires that we must change. I hadn't brought his bag into the bathroom with me. I was picturing him throwing a huge fit about putting his pants on. I pictured having to haul him naked back to the sanctuary to retrieve spare pants. EEEK! But he surprised me again by not even seeming to notice the slight wetness on his pants. I was more elated than I can find words to describe.

We returned to church and Boo continued his antics, but nothing could deflate my joy at the miracle that took place in the church bathroom! After church was over we had another big meltdown because he wanted to go to Grandpa's house, as we are in the habit of doing after Sunday services, and I told him that it was just too late. So while the evening was a little tough on him, Boo excelled overall with the experience of an unexpected change in routine and an unfamiliar situation. I couldn't ask for more!

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.